Cancer Survivors Network

I have stage 3a uterine papillary serous carcinoma (UPSC) with metastasis in distant lymph nodes, radical hysterectomy 9/08, finished 6 rounds of taxol/carboplatin in Feb.

I just got verbal results of CT scan which showed "shotty" evidence of cancer still in neck and axilla (underarms) - bummer :( I will review films next week and meet with my new doctor soon to discuss next line of attack.

Yerba, i hope that you are well after your megace treatments. I had a d&c on 1/15/10 and started megace also... i was hopeful about this treatment but i am having some strange side effects and wonder if you experienced any of this when you started this drug.
my throat feels like there is something deep down in it, although my breathing does not seem to be effected. last nite after taking the 40mg (iam also taking 80mg per day) and my tongue and top of my mouth began to be hot and tingly! Obviously i am concerned about my throat closing up... did you expereince any of these side effects? I spoke with my dr today and he stated this is very unusual and does not sound like an allergic reaction but cant explain it either. He gave me permission to not take the drug and see if my symptoms disappear and then start again on less mgs per day.
hope this gets to you and finds you well after this treatment. itoo do not want to have to undergo a hysterectomy at this stage of cancer if there is a more conservative and effective treatment. thanks for your help

My name is Christy and I was diagnosed with endometrial cancer around Thanksgiving 2010, my doctor called the cells pre-cancerous, not sure if that is the same as Stage 1A or not. I am currently about 40 days into a 90-day Megace hormone therapy (40mg, 3x/day), at the end of which I will have a D&C so they can do another pathology on my uterine lining. I chose this path because my husband and I were hoping to have children and the gyn onc indicated this as a method that might allow us a chance to do that before I have to have a hysterectomy.

Cindcurran - I have had relatively few side effects so far on the Megace treatment, a few light headaches, but nothing like those you are mentioning. This week I have had some light spotting, but when I called and spoke with my doctor, he indicated that this still sometimes happens on the therapy and that it requires the full 90 days to do it's work. I am still hopeful that it will work to successful results.

Where do you live in Northern California and may I ask who your gyn onc is? Thanks in advance!

Zarka

Where do you live in Northern California and may I ask who your gyn onc is? Thanks in advance!

Zarka

Hi everyone My name is Lisa I am a RN in the state of Minnesota. I was diagnosed on Jan 20 2009. Had total hyst on Feb 22 via Divinci robot. The cancer was 69% thru the wall and into my cervix. Lymph nodes and washing negitive. I am stage 2B. Started external beam radiaiton on 3/23 and will have internal HDR after the external is completed.I need 25 session of external and 4 session of internal. So every morning I get up and go to radiaiton. I was very happy to find this site as I felt that no one knew what I was going thru. There are support groups in my area for every cancer but mine.

I am writing for my mother Judy C.

She has papillary serous/clear cell stage 4 cancer. Diagnosed March 10th, 2008.. Had radical hysterectomy with debulking. The cancer was positive in 1 lymph node, 1 fallopian tube, cervix, omentum, and a small patch on her intestine. Negative washings.
Treated with 4 rounds of chemo. 35 treatments of whole abdominal radiation then 4 treatments of internal vaginal radiation. She is being treated at Dana Farber in Boston.

We have an issue right now. Her ca-125 jumped to a 40. Her last 1 month ago was a 26 and the one befor that was a 16. She is getting a ct-scan this Sunday morning at Dana then her follow up to discuss results is April 2nd... We are praying its not the worst scenario.

I know you have responded in the past, but I am still anxious and I think you have about the same as my mom--Grade 1 stage 1C or 2B depending on which path report I look at and plus or minus lymphovascular invasion. Neg pelvic nodes and washings but only six pelvic lymph nodes taken. My concern is still that some are recommending just brachtherapy and some both. One plan was 27 txs of IMRT and two brachy so 4800 dose of rad plus brachy to add to 6000 as I understood it. My mom has started with this but I again am worried she will have bad complications like fistulas or small bowel problems and even though she is otherwise healthy(still working) very social she is 71 yo. These different recommendations come even as a difference within the rad. oncs and even between gyne oncs. I do not want a complication nor recurrence but it sounds like pelvic rad can give up to 5-15% complication rate. any advice?? my mom will be compliant and just feels frustrated and worried which is not helping her recovery and she was up post op day 1 and home after the robotic-- told all was well and then got the news two weeks later that the path report was more invasive which caused a frenzy of us getting other thoughts and opinions which takes a lot of time which cuts into your treatment and makes you jump to a decision. thanks bonnie

I am grade 3a UPSC and not an expert on anything medical. I have been reading the stories of the UPSC sisters and wonder why my doc is not recommending radiation like most others. He is a very reputable doc - gyn/onc - in the field and I have decided that I need to trust him. I questioned him and he said he did not see any evidence that I need it (radiation). I have to admit that I am ambivalent - on the one hand relieved but the other concerned that I am "undertreated". When I questioned about recurrence he reminded me that I have a 60% change of NOT having a recurrence. I decided to trust his judgement.

So, to you I say, get educated here and by your doctors and get a second opinion and then decide the best course to take and trust your doctor. It sounds like there is no exact science, but there are protocols. I have checked the NCCN website for the protocol on UPSC. You can check that too and see if your doc's advice is within these standards.

For what it's worth.... and God Bless you and your mom.

Mary Ann

I agree the differences between gyn Onc and radiologists is very frustrating. My Gyn Onc (She seems very good and is married to a Gyn Onc) says that UPSC is best treated with chemo as this is very similar to ovarian papillary serous. She likes brachytherapy. I saw two radiologists. One also is against pelvic radiatio and wants to do five brachy which also targets the area of the uterus. One radiation recommended the traditional pelvic external beam and three brachy. I feel torn as I don't know what is best.

Dear Bonnie Sue,

I really empathize with your indecision because, the fact is, even leading radiological oncologists often don't agree on how much radiation is optimal for particular kinds of endometrial cancer, especially those that fall into the stage IB to IIA and that are, at the same time, grade 3 or very aggressive.

I had three different opinions in Philadelphia on how much radiation I need, in a few weeks, for MMMT (a very aggressive tumor) that is stage 1B with 18 clear pelvic lymph nodes and so sign of spread yet. My treating radiologist wants me to do full pelvic (IMRT) radiation for five weeks daily, followed by ("if you are up to it") three rounds of brachytherapy. Obviously both would minimize any chance of local recurrence. But neither, research shows, would much help overall survival since it is distant spread that proves to be fatal. Brachy makes sense to prevent recurrence in the vaginal cuff, where 70 percent of LOCal recurrences appear in my kind of tumor. And huge recent studies called Portec 1 and 2, conducted in the Netherlands, and cited by one oncologist I consulted, conclude that for unaggressive grades of endometrial cancer such as yours, stage IB, brachtherapy is just as effective at controlling local recurrences as EBRT--with far fewer side effects. (Have you googled Portec 1 and Portec 2? There are many summaries of its conclusions.) I can hardly advise you what to do, but you might look at these large and well-documented studies.

I too am a little leery of all the side effects I read of from women who uderwent EBRT or even IMRT (a form of pelvic radiation that softens many of the immediate side effects of EBRT but that, I have read, may produce nearly as many "late onset" effects such as aching pelvic bones and even hip fractures a year to two later. (Sisters, could I hear from any of you who FINISHED either EBRT or IMRT pelvic radiation more than a year ago? How many of you had diahrrea for more than two months? Aching hips and legs? Even hip fractures? Did any of you "sail through it' nearly unscathed a year to two later--even followed by brachytherapy?

My tendency is to choose just brachtherapy followed by last round of taxol/carboplatin. Yes, a local recurrence in my pelvis would be a bit traumatic. But is its small additonal protection (EBRT is only 13% more effective in controlling general pelvic recurrence than brachytherapy; the latter is even better, nearly 100 percent effective, in conrolling vaginal recurrence) worth the side effects I fear from full-pelvic radiation?

Hoping to hear from other,
RoseyR

Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.

It seems like you have had a rough time with your recovery. Hopefully you are on the mend now. Do you have to have chemo?
Just wanted to welcome you to the site. There are a lot a great ladies on here.

Thank you for the welcome.
I am thankful to have this site. It is difficult to talk to others. It seems like they don't understand. I look forward to visiting this site often.
I did not have to have chemo only radiation. My doctor told me that it was my decision about the chemo and that he didn't want me to regret anything down the road. It was his recommendation that I only needed radiation. All of you that have had chemo are very strong and have been through a lot. I hope all goes well for all of you.

In 2007 I had a colon resection and a hernia removed. After having a colonoscopy the doctor found a polph to large to get out, thats why the surgery. The doc said I had omentum cancer. I had six rounds of rotten chemo. Made me very weak, lost my hair and just had no strength at all. Did not want to eat, nothing tasted good. I went for pet scan every three months , then six months. So far nothing has showed up. My blood work is all fine. I go back in September for another cat scan and pray all is ok. Thats all we can do is pray because cancer is so stinking. That chemo knocks you for a loop. I read where one lady worked while taking it. I do not know how she did it. She was one of the lucky ones. I wish I knew of this place when I was going through everything. I am also left with freezing feet on the inside but the outside of my foot is warm. I wear socks to bed and three blankets on them and they are still cold.Has anyone else had this problem??? God bless each and everyone of you.

I am glad to hear you are cancer free.
I had uterine cancer stage 2, grade 3. Had a hysterectomy and the cancer was all removed. Lymph nodes were all clean, 58. I am just one treatment away from finishing chemo, next Friday. Tired and lost appetite a little just these past 2 weeks.

In regard to your feet, my left one is freezing cold and my right one is burning hot. The doctor says it will go away after chemo. I am almost sure it will not, because it started it right after surgery, before chemo. I talked to a friend neuro doctor, and he said that it is probably that the doctor cut a nerve. The bottom line for me is that if he cut a nerve I will do my best to adjust. I see my onco as the God who saved my life.

I just bought some NEUROPATHY OIL in Amazon. I going to start using it tonight. It supposed to work for the pain, but I am hoping it gives me some comfort in both feet.

Sorry you have to join our discussion board because of your diagnosis. Sorry to hear about all your problems after your hysterectomy. I too had the DaVinci robot surgery in January. Luckily I did not have any problems after the surgery. I was only in the hospital overnight after the surgery. Glad you made it through you radiation treatments. May 18th was also my final external radiation treatment. I will go into the hospital on Tuesday to have my internal radiation treatment. Don't know yet how long they will leave the implant in place. I will find that out on Tuesday. Hope you are feeling better and getting stronger. Hope to hear more about you.

Hi Lisa,
My name is David and I am a caregiver for my wife who had a total hysterectomy, went through 6 chemotherapies and now is experiencing Neuropathy symptoms in her fore arms which were the injection sites for the chemotherapy. Have you experienced any of those symptoms?
Sorry I see you have had radiation. However, we are in the same boat. If you are on FaceBook there is a Uterine Cancer site there also, people looking for information.
My wife had Uterine Cancer Stage 1, diagnosed on 9 Sept. 2009, operation on 21 Sept. 2009
During that operation a "Wash" was performed before any internal organs were removed and that was sent to the lab and the hysterectomy was vaginally extracted. Nodes were clean, the Uterus was loaded stage 1a less than 50% through the wall. The rest was clean. The "Wash" was Papillary Serous Adenocarcinoma of Endometrium Stage 3. 6 Chemotherapy session were successfully completed. However she started experiencing very tender to the touch on both of her forearms and cannot wear any watch or bracelets. Her last treatment was 1-19-2010 and it is now 2-7-2010 which is about 3 weeks. We have heard the word Neuropathy and put no creadance on it until we heard a lady mention that she was suffering from Chemotherapy induced Neuropathy. I have done searches on that and it definitely does exist. The big question is what can be done about it.
Regards,
David

I had/have neuropathy in hands and feet - My doc recommended B12 supplements. Check with your doc - Time is the sure cure. Best wishes. Mary Ann

Dear David,

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

Dear David,

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

Dear David,

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

Dear David,

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

Dear David,

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

Lisa - I was in the same situation that you are last year. Because the lymph nodes and washings were all negative, i was told that the cancer had not spread. I was on a schedule of pelvic exams every two months. I had no idea that it could metastasize to the lungs. Consequently, i was not scheduled for a CT scan or any other test to monitor for metastasis. Fortunately, I thought I had bronchitis and was given a chest x-ray that showed a change since the last chest x-ray. This led to CT scan and biopsy and that's when I learned that my cancer had metastasized.

Babs

hi my name is karina and i am 26 yrs old mother of 2 girls. about 7 months ago i started bleeding heavily and getting really tired all the time. so i keeped going to my local county hostipal, and they refused to do anything saying i was to young to have cancer,will needless to say after many months battleing them, they did a biopsy and they said i had Stage1A, and that they would have to do a total hystercomy. so on june 16,2009 i had my surgery, they said that it was indeed Stage 1A. but now 2 months after treatment,they are still giving me the runaround. they say i dont need chemo or radation. but everything i have read about younger women having it that some treatment after surgery is needed?I just had the CA125 test done but i dont know what the test really is or what it is meant for?i dont really trust the hopstial i am going to because they have given me the run around too many times in the past, but i have no choice because i have no other means of insurance. also what is the rate of recurrence?my docter told me right after surgery that i was 99.9%cured and now he told me today that theres a 20-30% chance of the cancer returning. the risk factors i had was i am overwieght i smoke ciggurettes and yes i have other health problems, somebody please help i am so stressed about this whole thing.
thanks
karina

Hi Barb,

Your the only other lady I saw on this website that has received whole abdominal radiation besides my mom.. My question is did you have a lot of side effects from that radiation? My mother still gets lots of belly aches and diarhea etc. She had that abdominal radiation for almost 7 weeks. She is getting a ct scan this weekend. We are from MAss.. she goes to Dana Farber.. How about you? I see your from Rhode Island. Thanks for any info.. Kris Ann

Kris Ann, I was treated right next door at Beth Israel Hospital in Boston but had my radiation back here in Rhode Island. The radiologist in Boston strongly recommended the whole abdominal- my doc here in RI wasn't really keen about it at first but he performed it and took great care of me. Your mom is in a great hospital . Yes- the radiation was in some ways harder than the chemo. I remember being very nauseous and had plenty of diarrhea too, but it gradually retreated after the radiation ended. Fatigue lasted the longest. When did your mom's radiation treatment end?

Hi again Barb!! My mother's last radiation was Oct. 3rd.. but that was last brachy.. her abdominal ended Sept. 15 approx... but she is still having crazy belly aches and stuff sometimes. Like it flairs up once in a while. And the radiologist at Dana Farber strongly reccomended the whole ab-radiation where as her oncologist said she could have done avastin for 1 year every three weeks.. but she ended up getting the radiation cuz the avastin was kind of a new optional treatment.

hello my name is satarell or sat for short. I am 27 years old and I was diagnosed with adenosarcoma about 2 weeks ago. They want to do a full hysterectomy but keep going back for more biopsy. I haven't had any kids so they have gone to 3rd and 4th doctors to see if there are any options. They removed a cerviacl polyp that had mixed cells. They also found another mass on my right ovary.
I worry they are to concerned over child birth more then the cancer.

Hi, I am Deanna. I am 39 years old and my doctor performed a hysteroscope in July 2008 where he found a polyp that was malignant. I was seen by a gyn/onc in August 2008, who then performed a total abdominal hysterectomy with staging on September 11, 2008. I had Stage IIIC Mixed endometrial and papillary serous carcinoma, I had one positive pelvic lymph node. I started treatment with 25 external radiation in October 2008 and finished in December with 3 internal HDR txs. I also planned a wedding and got married in November while taking radiation treatments, lol! I started chemotherapy in Jan.and will have carbo and taxol every 21 days for 6 or 7 cycles. I have already complete 3 of these treatments and tx #4 postponed due to low blood counts. I am being treated at by Cox Health Systems in Springfield Missouri at the Hulston Cancer Center.
God Bless you all,
Live Strong!!
Deanna

Hi, I'm new and sometimes distraught over this diagnosis. I had no symptoms and it was picked up on a pap. Got my results 5/5/11 and saw an oncologist on 5/5/11. Had a complete laproscopic hysterectomy on 5/16/11 which I recovered from quickly. I have stage 3, grade 3 uterine papilary serous and have started follow up treatment of 3 chemos of carboplatin and taxol, followed by 5 weeks of external radiation, then 3 more chemos. I should finish sometime in the fall. I actually feel really good and have resumed my other activities. But I need encouragement. Is there anyone out there with stage 3c (I was positive for pelvic lymph nodes but not paraortic lymph nodes) who has not reoccurred?

Arlene

Hi Arlene,
I was diagnosed with high grade stage 3C(para-aortic nodes) UPSC in 1/09 and I am still dancing with NED as they say. I recently passed my 2 year mark since finishing chemo. I didn't have the sandwich treatment. After recovering from my (lap) hysterectomy I had my XRT/cisplantin/HDR combo up front followed by 6 rounds of carbo/taxol. So far so good. I'm sorry you had to join our club, but glad you're doing so well. Hang in there and just take it day by day. The treatment isn't nearly as bad as you imagine. :o)

Laura

Hello my name is Selene, I'm 27 years old and I was diagnosed with Adenosarcoma about two weeks ago. I have a full hysterectomy set for September 15. Does anyone have information about adenosarcoma?

I just had a hysterectomy for an adenosarcoma. This is different from MMMT or mixed mullarian adenosarcoma. I had two fibroids another polyp and a cyst on my ovary that were all benign. The original adenosarcoma was encapsulated in a polyp that was removed with a D & C. The doctor tells me I am cancer free. I will want to see him in 6 mos. however, to see if he plans to do cat scans for my lungs and vagina as that is usually where it might recur (if it does). It is a rare disease, but my doc at Univ. Hospitals in Cleveland has seen 7 cases including mine. He tells me they are all doing well.

we were diagnosed at the same age... its crazy cause the age for women who get this are normally in there 60's.... how are you now?

Nicole

Stage IIA UPSC and Clear Cell Carcinoma. Radical hysterectomy 10/23/08; 4 rounds of carbo/taxol with 3 rounds of internal radiation (vagnial cuff) sandwiched in between. Finished treatments on January 14, 2009 and I'm feeling fabulous!!! (Except for my feet, ankle and hip pain and the hot flashes, hmmmmm what else did that stupid chemo and surgery do to me. Oh yes, memory lose... LOL.) I live in sunny North Carolina.

MIND, BODY AND SOUL!

Hugs.

My name is Kelly and I was diagnosed in May of 2006 with uterine cancer following a D & C - Total hysterectomy by a gyn/onc and was diagnosed with endometrial cancer/ Stage 1-C -- abdominal washing and 42 lymph nodes were all negative, but cancer had spread to 60% invasion of the uterine wall - received 27 external radiation treatments and internal radiation was not recommended because tumor had been confined to the upper third of my uterus - had a CT scan prior to radiation treatments to assist with radiation planning -- for the first 2 years had 3-4 month check-ups with gyn/onc (routine internal with occasional PAP)- at 2nd anniversary, the follow-ups have been extended to 6 month intervals--thus far all has been good -

I was diagnosed with Stage IIIC endometrial cancer. Feb 3rd had a total abd hyst and oophorectomy with 25 lymph nodes removed. All 25 tested negative. This past week was my second round of chemo with taxol and carbo via a PICC line. I receive Neulasta 24 hrs after each treatment even before my numbers are known. Once I finish my 6 treatments it will be on to radiation for 5 wks-5 times a week. Then brachy. Not sure how much of that yet. I live in Colorado by way of Boston. My best therapy will be in April when the 4 grandkids from Boston come out to visit Nana. I can not wait!

My daughter Angela, had cancer surgery July 8th, 2010 on her 38th birthday. She is married with three small children. She is out in California and will be treated at U.C. Davis Medical center. We all live in Texas. There is no family out there that is able to help. We will be flying back and forth. Her cancer is undifferentiated/endometriod 3c cancer. She is still iln the hospitall, but my be released today. Her wonderful mother-in-law, Mary, is two doors down in the same hospital with ovarian cancer IV and is not doing well. This is really hard on Angela. I really need to hear from somebody that has the same condition and doing well. Angela will start very aggressive treatment in two weeks. Linda

Linda -
I don't have the same diagnosis as either your daughter or her MIL, but I am being cared for at UCDMC also. My hysterectomy was July 1, 2010 and was Stage 1a, Grade 1 endometroid cancer.

Both of your loved ones are in excellent hands. I retired from there and appreciate the think tank environment and resources available. I'm closeby in Woodland. If you'd like to contact me privately, my email is srmink@pacbell.net

Suzanne

I was diagnosed in January of 2010. I had the total hysterectomy, the 6 weeks of chemo and the 5 weeks of abdominal radiation. My last Chemo was 5/18/10 and my last radiation was the 2nd week of July. I was able to work full time through it all-only off for treatments. I had a tougher time with the radiation but still worked. I have had 4 days now of feeling really well. I am back to swimming,walking (not running yet) and eating pretty normally. I have enough hair to feel OK without a hat and I have eyelashes and eyebrows! I won't say it was not hard and the prognosis is not great but i am learning to live 1 day at a time and not put off those things I thought I would do someday-today is the day!

Hi Kelly and all - My name is Paige and I'm 38. I was diagnosed Jan. 09 after hysterectomy for fibroids. Unfortunately - due to the surgery plan we had for fibroids, they left in my ovaries, tubes and of course nodes, not knowing the cancer was there. Initially they thought I was 1C with about 65% myometrial invasion and grade 3 hybrid histologic type of large cell/neuroendocrine(small cell) cancer. But I had a PET scan in March that revealed spread to 1 pelvic, 1 paraaortic and 1 portal lymph node (still can't figure out exactly where that is, but have been told it's up high behind the liver). So they now consider me stage 3C at a minimum and probably stage 4. All other organs are clear thus far. Started Cisplatin/Etoposide chemo in Feb and just finished 3rd round last week w/3 rounds to go. Will repeat the PET scan next week to see if chemo is working and determine next steps for radiation. Plan is for full abdominal radiation for 6 weeks in the middle of chemo. However I am scared about the long-term side effects I see some of you having from this :(

Drs believe my portal node is a metastasis because it measures 3 cm. I am told that the portal node would be a highly risky surgery to do to go in and remove and also near impossible to radiate so chemo is the primary hope to reduce/eliminate it.

So far my only side effects have been low white blood counts and random chest heaviness. Kelly did the Neulasta work for you? did you have any side effects from it? My Dr told me it might not work as well for me since I'm doing 3 days in a row every 3 weeks and it works better for 1 day plans....but I don't want to delay treatment. Apparently the neuroendocrine part of my cancer typically recurs within 2 years, so I'm willing to blow a nuke bomb off in my body if it will help prevent recurrance! From what I understand, once it recurs - there's not much more that can be done? But just chemo that can buy you a few months of time? Anyone have any knowledge or experience otherwise?

Hi Paige I am sorry for the delayed response I have been away from a computer for a few weeks. The Neulasta frequently couldn't get me up to par. I had several delays in treatment and was very frustrated. After the Neulasta I had bone pain in all of my large bones about 12 hours after the injection that lasted for about 3 days. My doc had given me a prescription for the pain that worked just grand and I was able to accomplish all of my daily activities. After I started drinking Echinacea tea by Yogi I noticed my ANC go up and between the Neulasta and the tea was able to get back on track. I would ask your doc if you can drink Echinacea tea just to be on safe side but it appeared to help me. I totally understand your thinking about nuking the bugger into oblivion...that will be my prayer for you:) Take good care of yourself.
Big Hugs Kelly

So sorry that you are going through all of this, but glad that you found this site. We have a really supportive group of ladies here. Your treatment sounds similar to that of most of us here. UPSC is uterine papillary serous carcinoma, it tends to be more aggressive and recurrent than endometriod uterine cancer. Thank goodness that yours is endometriod, I think the cure rate is pretty high for your type of cancer. We are all in various stages of recovery and treatment. It really helps to have these ladies as a sounding board, I hope you find it helpful also. Feel free to ask any questions, we are all pretty open and supportive. I hope you are feeling well after your first chemo treatment.
Take care... hugs,
Deanna

I appreciate hearing your history. I looked up the topotecan. I see it has been used for ovarian and small cell lung cancer treatments. Will you be taking it as a pill, or are they giving it IV? I pray for success for you. You said they found a node in the omentum during surgery in July. What kind of surgery did you have then? I hope your kidneys tolerate this new medication. Lobo looks like a great friend. HUGS to you.

No topotecan. More Taxol/carboplatin. I'll postthat soon. Two surgeries in July, one to fix my right uterer (between kidney and bladder) and then surgery to unkink my intestine when it became kinked after the first surgery. Nodule found during second surgery and tested. But kidney function seems ok now. Mary Ann on San Francisco Bay

Hi Mary Ann. We seem to be the closest match: I live in Santa Cruz, am 68 yrs old, have UPSC4b, and am being treated at Stanford. Labor Day 2005 I had an emergency hernia operation and the path report said I had uterine cancer. Had a total hysterectomy in Oct. The gyn onc surgeon saw no sign of cancer, but the path report said I had UPSC4b (since I was feeling great and my CA125 was 16, it was quite a shock). Starting Halloween I had 7 rounds of cisplatin, taxol, adriamycin and neulasta. After the first week I had no side effects from the treatment. CA125 went down to 3. Eighteen months later the CA125 was 295 and the CT scan showed a few tumors and lymph nodes. My gyn onc and a gyn rad decided to operate and radiate at the table on Valentine's Day 2007. They took one look, saw tumors and oddities attached all over the abdominal cavity and sewed me up. Took 4 rounds of topotecan with no lowering of CA125 and no side effects. In June (Friday the 13th) I started six rounds of carboplatin and taxol. No side effects and CA125 went down to 13. On Inauguration Day 2009 I had another emergency hernia operation (my bowels had herniated and kinked). The general surgeon saw no signs of cancer. In June 2009 my CA125 was 300 and the CT scan showed tumors and nodes. Monday I'm starting carboplatin and doxil--a "coated" version of adriamycin that doesn't wreck your heart. I'm curious to learn how they "coat" an IV fluid! Ran out of room! Cecile

I can relate to the up every 1 to 1.5 hours during the night. I have nights like that and have had a couple UTI's. It usually turns out that I have a UTI when I get up that many times during the night. I also have had radiation and am being told that I have decreased bladder capacity as a side effect of the radiation. I just take a lot of naps when I feel tired.
That sounds like a pretty tough chemo regime. What cell type of cancer did you have? A lot of us here were diagnosed uterine papillary serous carcinoma. I would imagine that you are very tired if you are receiving carbo/taxol 3 times a month. I am getting ready to have my 6th and last carbo/taxol treatment. Mine were every 21 days, but I have had a couple of postponements due to low blood counts.
I have a lot of days when I am tired of being tired. Like I said, I rest when my body tells me to rest and sometime, if there are things I want to do, I push through it. Good luck and God bless you.

I try to take naps all the time but all the laying around is really taking a toll on my stamina! I try to get a lot of things done on Saturday, the day after chemo because of the steriod rush I get. I only get the carbo once a month but I have noticed that I feel worse after that round of treatment.

My pathology report says endometrial adenocarcinoma with serous features, FIGO grade 3, nuclear grade 3.

Thanks for the reply. I have really been getting down lately and it helps to know someone else can relate!

* Thanks to the nurses and hospital staff @ Hoag. You guys are awesome!

Sorry to hear you are so tired all of the time. You really are on a different chemo schedule than most of us have been on. Most of us have received our chemo every 21 days if the blood work is okay. I am one of those who had 3 chemo treatments and then radiation and then will finish with 3 more chemo treatments. I will have my internal radiation on Tuesday.

Sorry to hear about your bladder infections, too. That is miserable when you can't get good rest at night. Have you tried drinking cranberry juice? that is supposed to make the urine more acid to reduce the chance of infections. I am sure the urologist will have some "magic" pills to make you feel better.

Glad to hear you have a supportive family and group of friends. Hope you find this site helpful too. Good luck with your treatments.

I had my third chemo treatment of the third month today and was so exhausted. It helped to go to the chemo lounge and get to compare notes with my fellow "loungers". A lot of them are on different treatment schedules than I am too. Today I was told that I may need a blood transfusion. I guess that may explain some of the exhaustion but I am kind of nervous about it.

I bought some cranberry pills to take and am now on the sixth medication for the UTI. The meds have been helping but I am still getting up all the time most nights. I hope this last one works.

It really helps to have people to communicate with. I really appreciate the comments.

Good luck to everyone!

* thanks to Karen, my chemo nurse who has to listen to all my complaining!

Welcome Jen
I have stage 2b endrometral cancer with total hys via DaVinic robot 2/20/09. The recovery was good some pain but mostly at the stab sites. Much faster recovery than expcted. I have had 25 external radaition (IMRT) and 4 internal (HDR). I will be going back to work on Tuesday.
Best thing to do is start a book for all of your records and appointments this help keep track of every thing and is a good place to keep every thing together. Keep us updated. I find this site very helpful and comforting. We where lost once too but now we are almost found
Lisa

Hi Lisa
You have been out of work since February? Is that because of the treatments? You can't work during that time? I right now have taken off 6 weeks...Just curious if it will be more if I need treatments.

I have been out of work since 1/30 I was to have a simply hyst on 2/4 but the biopise came back cancer so had to see oncoligist. Had surgery at end of Feb due to the docotors schedule. I am a RN medical case manager for a work comp insurance company and my case where given away so did a lot of resting an house cleaing for the first month. I had daily radiation for 5 weks and my doctor wanted me to just rest. After the external i had the internal ones that ended 2 weeks ago and the doctor wanted me to rest for a month but convinced them to let me go back in 2 weeks. I have very good disabilty insurance. My doctors beleive that rest is the best. I was very tired and still get tired by end of the day but it is much better now. Best thing is to talk to the doctors they really know best.

Wow, that's a long time to be out of work. I'm hoping that I don't need any treatments. I'm keeping my fingers crossed. I can't imagine being out of work for that long because I'm not getting paid. I have no Short or Long Term Disability. I will def keep ya updated on how things go.

Hi Lisa, I took 6 weeks off for surgery - but worked full time during chemo and radiation. I actually enjoying working, even though I did feel a little burnt out at times - it was worth it - it kept my mind off the constant "I have CANCER" freak-out.

I too had my total hysterectomy by Davinci in January. The recovery period was very good. I was only in the hospital overnight. Minimal pain afterwards. I never had to take any pain medicine. My biggest discomfort was the bloating afterwards. They inflate the abdomen with gas, so they can see the organs. My surgery was 6 hours long, so I guess they used a lot of gas. It took weeks to get rid of the bloating.
I had an abnormal pap test and thought I would only need surgery to take care of the problem. I was shocked to find out I had Stage III-C UPSC. I have had 3 chemo treatments, my 28 external radiation treatments. I will have internal radiation next Tuesday. And then I will have 3 more chemo treatments. Hope you family becomes a support for you, rather than a headache.
Good luck with your surgery.

Hi Ro10, I am new to this site. Can I ask how you are doing since this post?

Arlene

Before surgery I was diagnosis Grade 1 endometrial carcinoma in Philadelphia last March, 2009. I had laparoscoptic total abdominal hysterectomy with bilateral salpingo-oophorectomy, bilateral pelvic and common iliac and para-aortic lymphadenectomy. I'm not sure what that means but I know that I had laparoscoptic hysterectomy while they remove my uterus, tubes, ovaries and lymph nodes thru the vagina. I never had children so I wasn't ready to have hysterectomy but I realized it's better to have hysterectomy before the cancer spreads. After operation they discovered that I have Grade 1 endometrial carcinoma with multiple metastatic pelvic and probable aortic nodes (stage III C) I had cancer 80 % thru the wall of my uterus which is why I have lymph nodes disease. Will have pet scan to check for tumor on my chest/neck area at Fox Chase Cancer Center in Philadelphia soon. They recommended me to have chemotherapy (Cisplatin/Doxorubicin)in June/July. Does anyone experience with Doxorubicin? I have profound hearing loss from birth that I wear hearing aids on both ears and I'm concern if I take Cisplatin will my hearing get worse? I still have less sleep at night and still go to bathroom every 2 or 3 hours at the most. I know it's frustrating but I have to stay positive and keep on living! hugs Reddie

I hope all is well with you! wanted to see how you are doing. My mom is going to have the same full surgery you had and will likely be diagnosed with stage 3 (aortic lymph nodes are enlarged). I'm scared to death for her and am looking for ways to try and cope with the bad news :(

Kind Regards,

Amanda

Thanks Linda, you are a wealth of information. The pain is very similar to the pain I had going into radiation - so maybe it's part of the original problem. However, irritated nerves sounds right. There are clumps of nerves around the tail bone - and that's where they have pinpointed the radiation for the past week. I will call my oncologist tomorrow. That internal radiation sounds scary - but it seems that others on this site get through it okay. Isn't it amazing what we get used to!

Set up for a hyst on July 14 and looking for another doc to do the Da Vinci instead. Back in Sept 07 had an endometrial biopsy showing negative for cancer and had fallopian tube taken due to cyst/infection. While in surgery doc took lots of pictures all looking good but said she thought I had fibriods, to keep check on it. Well, I got laid off after recovery in December and finally got employed last July. After getting caught up on a lot of back bills I finally got another sonogram (wasn't big on my list as it wasn't causing problems) showing a huge tumor in uterus. Doc set up for surgery now did an in office sonogram and it was round like the moon and had white on it - he said 99% chance it is not cancer but a calcified fibriod. I'm definitely going to get a hyst but trying to be pro-active and get myself ready for worst case scenario should I get positive biopsy for cancer. I'm in fear as I am having other symptoms like lymph nodes doing roll call/pain hoping it is something else. Hearing you guys going through what you are puts a human face on a tragic but survivable disease - thanks for sharing your stories.

I love your on-line name. It brings a smile to my face when I read it. Hope all goes well with your hysterectomy. I know it is hard to not worry about the unknown. But like Linda said most of us had no symptoms. Try to be positive, and have cross that "cancer-bridge" when you know for sure. Good luck to you. I hope you get good results after the surgery. If you don't we are here for you. HUGS to you.

Hugs to all our newcomers. There are bunch of wonderful women on this board, much support and love.

MIND, BODY AND SOUL!

Hugs.

Regan.... 32... Cleveland, Ohio... Grade 1A endometrial cancer.... Megace hormone treatment.... repeat biopsy on August 21, 2009.

hello, i hope that you are well and the megace proved to be beneficial. i was just diagnosed with uterine stage 1 cancer and have decided to try the megace treatment. i will undergo another d&c in 3 months to see how my body has responded.
i am currently expereincing some side effects from the megace and wonder if you did too? my throat feels like there is something stuck in it although i dont find myself having difficulty with breathing... also my tongue and roof of my mouth have a hot tingly sensation... i am going to stop taking the megace for atleast 24 hours and see if the symptoms subside then start again and probably take a smaller dose everyday. i am currently taking 80mg per day.... maybe that is just to much for me. my oncologist cant explain these symptoms that i have but thinks this is good place to begin.
i would appreciate hearing from you and hope you are cancer free from these treatments

hello, i hope you are well and cancer free from the megace treatments. i started the megace on 1/15/100 but am having some side effects that are disturbing and may stop my treatment, which i dont want to happen. i am wondering if it took your body some time to adjust to this treatment.
i am experiencing throat sensations that feel like a have something stuck in the very back of my throat... and last nite after a dosse of the megace my tongue and roof of mouth began to feel hot and tingly...i of course am afraid that my throat is going to swell shut!
my oncolgist states to me that this is all very unusual and doesnt know how to explain it, but that i can stop taking the drug until the symptoms become more bearable and then start again on the megace, maybe in smaller doses. see how i react to that. i have another d&c set up for april 10 to see how my uterus has responded.
i want this treatment to work and i am hoping that megace is just getting used to my body! and i can pick up this treatment once again very quickly.
would really love to hear how you are doing and what happened to you
thank you

Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
Thank you all for being here.

Happy you found this discussion group. There are a lot of caring supportive peopled here. So sorry to hear of your diagnosis. Stay strong and fight this monster. We are all in this together. Hope you are feeling okay. Hugs.

How difficult it must be for you since you have been through so much all ready. Sorry to hear about your diagnosis and the new tumor. I'll add you to my prayer list and hope that the treatment plan helps you. Hope you find this site helpful. HUGS to you.

My name is Karen. I am 66 years old and was diagnosed a year ago with Endometrial Cancer, adenocarcinoma, Stage 3A,Grade II/III. I had a complete hysterectomy with the DaVinci Robot and had a very speedy recovery. A month later I started my external pelvic radiation treatments and had 30. I found that very wearying. A month after completing radiation I started chemo and was scheduled for 7 treatments of Carboplatin and Taxol. However, I was having an increasingly difficult time keeping my white count up in spite of having Neulasta 24 hours after each chemo. In addition, my red count was falling to the point I had 2 units of packed cells, and my platelets just kept dropping (down to 20). The neuropathy in my feet was getting worse and so after 5 treatments my gyn oncologist decided that my body had probably had about as much as it could handle and chemo ended!

At this point, I am feeling SOOOOO much better, my hair is growing in (VERY curly), and I am working on getting my strength back…taking a movement class and have started Yoga.

I originally signed up on this website a year ago but somehow in all of the overwhelming bombardment related to treatment, appointments, etc. I "dropped off"... Now that I have more time and energy I have reconnected...and it is obvious I have missed a wealth of information and sharing!! There are so many knowledgeable, helpful women here who so graciously share their wisdom! You are obviously a very warm, caring group!

You poor thing! You're living my darkest fear: that I will have a recurrance before I finish my initial round of treatment. It happens and I am so sorry that it happened to you before you even got a chance for a reprieve.

I had my hysterectomy & debulking surgery for UPSC in October 2008, also, the same time as your initial surgery. I'm so sorry that you had to have 2 surgeries so close together! No lymph node involvement but mets to the liver later; I guess it doesn't matter what stage they called it at the time of the 2nd surgery. ((((Pat))))) Is it the UPSC that metasticized near the liver, or another primary cancer? I have no idea which is better! I am having trouble finding any good information online about 'mets', so anything you can share that you learn from your oncologist would be very helpful for those on this Board who are dealing with recurrance, and those of us who worry about it and would like to know more. Anyway, welcome welcome.

I have UPSC Stage III-c, and had 6 rounds of cabo/taxol from November 2008 to the end of March 2009; then external pelvic radiation all of May with my last external radiation treatment next Tuesday (28 total rounds); which will be followed by 3 internal radiation treatments June 17th, 24th, and July 1. I have a 2.7mm 'nodule' on my lung, according to my last CT-scan, which both my oncologists say is NOTHING, but that they will check on when I have my next CT-scan mid-July. So I definitely feel your pain, Pat, and share yur fears.

...for the comments. This happening really makes you look around and realize that if you become ill - there are sooo many loose ends in your life that you need to straighten out and line up in case things do get hairy. I'm trying not to make myself crazy but I'm going to keep myself so busy between now and the surgery tying up loose ends I won't have time to go crazy although it may look like I've gone nuts because I'm jumping from one thing to another. My husband doesn't have a supportive family nor do I - my friends are spread out all over the country (veteran trucker - that's what I get for my gypsy lifestyle coming back to bite me!) I'm seeing with clearer eyes my own weakest links and if I get a chance to do better in the future I definitely will.

Hi. My name is Mary and i'm new to this site...I was dianosed after having a sonogram for a side pain in my right ribs about a month ago...After numerous tests and biopsies, they still aren't sure of the pimary so they are senidng me to City of Hope in L.A. county. They are pointing to the Uterus as the cause though, and said it has metastisized to the liver and bile duct of my pancreaus also two possible spots in my lungs...I'm 41 and very scared. I get my port in after his weekend to start chemo as this is supposed to be very aggressive cancer, so they said enough testing...They are putting me on Gemcitabine and Platinol...Has anyone ever heard of this? Thank you and God Bless you all.-Mary

I appreciate your concern. I do have friends who are extremely helpful. My daughter lives in New York City,
but calls daily and comes to visit when she gets a chance. Sometimes, I'm okay with my prognosis, but there
are also times when I feel lost and scared. I stopped radiation last week and the tumor pain is increasing daily.
I see my oncologist tomorrow, but he said I have to wait a few weeks before I can have any chemo - he's
talking about some trials - but I don't know if I want to do that. Basically you have to stay in the hospital and
they pump you with strong chemo for days. It burns your skin off! Anyway, tomorrow he will prescribe a stronger
pain killer - I have percocet, but it does not help much. I'm still working so have to take something that reduces
the pain, but doesn't make me loopy. Anyway, thanks for your note - it means a lot to me.
What is your situation? Mia

Mia,

Your story is amazing. I wonder if I would be as courageous as you - dealing with serious pain and still wanting to work!! I do know that being busy helped me "get out of my head" which is a dangerous and stressful place for me to be.

God bless you and may you get relief from your pain.

Hugs and prayers. Mary Ann

Diagnosed breast cancer Jan. 09 4 Rounds of chemo and just had lumpectomy 6-8-09 I just found out did'nt get clear margins have another surgery scheduled 6-22-09 I feel like this will never end. Miss alot of work

I have to apologize. I had a PET/CT right after I wrote that post to you and then I went to California for month to deal with a 10x10x20 foot storage space, where i had to decide how to let go of half of the stuff,and I apparently lost my mind somewhere in those storages. At one point I had four storage spaces so I could keep track of what was going where. The PET/Ct came back with no metablic activity. So I just allowed myself to not think about cancer, very much for a month.

As for my story. I have UPSC, surgery April 08, no lymph nodes taken, confusion, keeping an eye on things, CT, PET/CT, pap type tests every four months, lots of lifestyle and diet changes, and just really hoping for that shoe not to drop. I am going to keep reading the posts to see how you are doing. I hope everything is going well for you now.
I offer my number to anyone 9475179417 or you can email me at claudiaallen27@yahoo.com if you have some thoughts. Sometimes talking to a friendly voice is much more comforting than a computer. Some of these gals are very funny and refreshing on the phone.

As always, love and hope,

Claudia

Welcome to the site, but so sorry you are joining our journey. I can certainly understand the terror you are feeling. When I was first diagnosed I read things on the internet and they were so scary, but most of what I read was old statistics. They are making such progress with the treatment of cancer. I know I was terrified of the side effects of chemo. But that was something that never happened. I got pre-medication and meds to take after the chemo, and never had any problems.

Just try to take one day at a time. Ask questions when you have them. I am glad you have a gyn/onocologist to do your surgery. They will be able to do proper staging to determine your stage of cancer. I have III-C and had 21 lymph nodes removed.

Does the hospital you are going to have your surgery have any support groups. When you are in the hospital you might ask to talk to a social worker that can help you with issues you have..... family care, financial concerns and support for you.

Good luck with your surgery. We are here for you, so you are not alone.

Gloria....I know how shocking the news must be to you! There are sooo many wonderful folks on this site that can offer you lots of good information and helpful suggestions. I wish this site had been active when I was first diagnosed. I have learned so much in the short time I have "checked back in"

Try to spend a little time everyday, an hour if possible, NOT thinking about cancer! Spend time doing something that is relaxing....a nice bath with candles, listening to music, spending time in a park, etc.... Dealing with all of the things you are trying to handle must be very draining and taking a little time for yourself can be reguvenating.

The suggestion to ask to see a social worker is a great one....they are a wealth of information! I also agree that the chemo treatments were very "do-able"....they medicate you prior to the treatment so nausea and vomiting was not an issue for me. Keep asking questions!

Karen

Have an GYN/Oncologist who comes highly recommended. Am fortunate enough to have a great medical team. As for the emotional part of this, so far this has been the only forum that is active that I've found so far. No support groups nearby, so internet will be it. It all happened last week and now they want to do this enormous surgery this week. Trying to wrap my arms around it is difficult to say the least. Not even sure if it's worth fighting??? Sounds kind of hopeless on alot of sites. Diminished quality of life, financial ruin, etc. Guess I'm just overwhelmed...... Generally a very positive person....but this.....

I understand how shell shocked you must be. I have found that there are lots of very helpful and supportive people on this site. I think that it is well worth the fight. This is the second different cancer that I have had and it just metasticized (not sure of sp). And this has put MORE fight into me. I won't say that everything is rosy all the time and your quality of life may be diminished for a time but it is not a permanent things. I can relate to the financial issues but that too will pass. Just take things one day at a time (I sound like a sports coach) and one of these days, things will improve. You will be in my prayers.
Pat

shell-shocked is a good description. raw is another. so many worries. worried about how to tell/take care of my very elderly parents and how to take care of my dog & 2 kitties. worried about keeping my job; worried about the financial issues; and, sheepishly, worried about losing my hair and looking even worse. I'm already very very thin and bald will be really hideous.

I was just diagnosed this month with Grade III uterine cancer. Surgery just was scheduled for June 29. Lots of worries here too. Lots of faith also! We were pretty shocked all last week, but it has settled in more. Now we are ready for the fight. Give yourself a little time. You will settle into the battle too.

It is hard when you have people like your parents who depend on you. When you feel ready, start reaching out to everyone in your sphere to help you with them. If you can be specific in their needs to the helpers, it works better. I have two elderly parents and three children in my home. My husband is good but he cannot do it all. We need people from the outside to help us too! My pastor says it actually is good for the helpers too.

I was diagnosed last March with Stage IIIC Grade 11. I was crying and scared to get the news from the phone call from Gyn about the results from biosphy. I was informed that before operation they said that I had "pre-cancer" but then after operation with pathology report that I'm on stage IIIc which is unexpected. I informed the news to my family and friends at work. Surprisely, many of my co-workers had going through cancer in their lives before and shared it with me so I don't feel alone anymore. You will be surprise how many people who are willing to be there for you to help even though I didn't ask for help. Don't be afraid to speak up...they are willing to pray for you and make you feel stronger again.
hugs, Reddie

My daughter Angela, had cancer surgery July 8th, 2010 on her 38th birthday. She is married with three small children. She is out in California and will be treated at U.C. Davis Medical center. We all live in Texas. There is no family out there that is able to help. We will be flying back and forth. Her cancer is undifferentiated/endometriod 3c cancer. She is still iln the hospitall, but my be released today. Her wonderful mother-in-law, Mary, is two doors down in the same hospital with ovarian cancer IV and is not doing well. This is really hard on Angela. I really need to hear from somebody that has the same condition and doing well. Angela will start very aggressive treatment in two weeks. Linda

Anyone from San Diego, CA?

Hi. My name is Shelly. I was diagnosed with stage 1B uterine cancer in Jan 09 and had a abdominal hysterectomy also removing lymph nodes and ovaries in Feb. 09 @ Hoag, Newport Bch, CA. Currently in the 3rd month of chemo (carbo/taxol) 3 times a month for six months and once a month 9 months after. I am also having to get both shots for red blood cells and white blood cells. (sorry I forgot what their names are)
I have had 2 bladder infections so far and am not getting very much sleep. Most nights I wake up every 1 to 1 1/2 hours. I am very tired all the time and am not sure what is due to the chemo. After trying to treat the bladder problem my oncologist has requested a referral to a urologist but OMG they are hard people to get to see!
My family and friends are very supportive but I am really getting tired of being tired all the time! Has anyone else had this problem and what did you do?
Thanks!

Hello Shelly,
I was diagnosed with uterine cancer stage 2B, grade 3.
I am just about to finish my last chemo treatment this Friday July 22, 2011.
I had a radical hysterectomy, including removal 58 lymph nodes. The lymph nodes were all clean, but the tumor in the uterus invaded the cervix wall.
Any way, the only treatment my doctor recommended was chemo, taxol/carboplatin.

It is very normal to feel tired after chemo, however, please talk to your doctor as soon as you have a chance. In regard to not being able to sleep well, it could be the steroids they might be giving you with each treatment. I was given steroids every time I had chemo for about 3 months. After that, apparently the protocol changed and I only got it the first day of each cycle, which is was also when I had both chemicals (taxol and carboplatin).

My doctor prescribed me AMBIEN, but it did not work for me at all. I still take it, and it works some. I do to have a hard time going to sleep. I take 1 AMBIEN before bed, and when I wake up 3 or 4 hours later I take an anti-anxiety pill.
Are you currently working?

I am guessing you did not do too bad with the infections, since that could have delayed your treatments and you have not mention anything about it.

I hope this helps you. Stay in touch.

Please don't ever say that it is hopeless! There is always hope, and that is what you must hold on to now! It is all overwhelming, especially in the beginning. I was told at one point that the internet is one of the last places to look for information. Be sure when you are reading on the internet that you are looking to see how current the information is. I have a hard time finding much that is less than 2 years old. 2 years is really old in the world of cancer research. Anyway... YOU are not a statistic. There is only ONE who can decide when it is your time. No doctors or statistics are going to determine when the Lord takes you home. Please don't allow cancer to have power over you!!!
Please consider getting and reading a book called "There's No Place Like Hope" by Vickie Girard. I just read it a couple of weeks ago, but wish I would have had it when my journey began. It is excellent and very easy read, even if you are not much of a reader.
Good health and God be with you as you go through and heal from your surgery. Take one hurdle at a time. And believe that you are not alone! The Lord is walking with you through this journey and myself and all of the wonderful ladies on this site are here for you.

Hi Gloria. When I got my initial diagnosis in February 2006, I too was shocked, but couldn't find anyone with UPSC. After a few days I told people at work and where I live. One neighbor volunteered to walk the dog, another to drive me home from the hospital. My boss was very supportive and the office manager reviewed my sick leave and vacation time with me. I had laproscopic surgery, took three weeks off work (I think I could have done it in two). I'm a secretary, so my work is sedentary. I was able to work through chemo, just taking the actual chemo day off work, usually a Thursday. Friday would be ok, Saturday I would feel sick, weak. Sunday not very good either. I had the option of going to work on Monday or not and I don't think I missed any Mondays. I bought two wigs, but often just wore a scarf. American Cancer Society had a program "Look Good, Feel Better" that gives you some free cosmetics, shows you some ways to tie scarfs fashionably, and I did that and started using cosmetics again for the first time in 30 years (I was 70 years old in 2006). About 4 weeks after surgery I was riding my bicycle part of the way to work again, same as I had before diagnosis. The help and support I got from many people around me was very good for me. And it was nice that in the law office where I worked, we had a client, cancer patient who had been fired, bring suit and win. Good luck to you in your scary journey and may you be "Dancing with NED" (no evidence of disease) this time next year. Mary Ann on San Francisco Bay

I felt the same way when dignosised in Jan. But surgery external and internal radiation and now life is getting back to normal. This site was only support group i could find. Even at the cancer center where i was treating i was only one with "my type" of cancer. It can be very scary but some times we need to face the scary stuff to get on with life. Good luck Gloria
Lisa

When I joined this "Sisterhood" in January I was the 10th person to sign on with UPSC. I have Stage III-C, as do many others. Now we have close to 60 "Sisters" who have signed on for themselves or family members. I know I have found this site to be so helpful to me as I go on this journey. I am amazed at the strength and courage that so many of our "Sisters" have displayed. I am touched by the caring words that I have received and reading the encouragement and helpful suggestions given to others. We have had many different treatment plans, but basically the same drugs and radiation. Some are finished with their treatments, and others are closing in on the end of their treatments. We have had many who are dancing with "NED". I hope to join that dance with others. Thank you everyone for everything, and may we continue to be an encouragement to others who find themselves on this difficult journey. BIG HUGS to all of you.

Well said, Ro. I ditto your comments.

Mary Ann

It is good that 60 women have found this discussion board (too bad it is necessary tho). When I was diagnosed with UPSC, my gyn/onc told me what I had was very rare. At one appointment she said something about my cancer being a 'oddball'. I hated that! It makes you feeling so alone. Which is why I was so happy to find this site. I am not an oddball here. Just one of the gang. Keep the faith!

Hi all,
I've been a lurker for a while but now have posted so I thought I'd log in on this great idea called the Roll Call!
I am 45 years of age and have endometrial adenocarcinoma of the uterus (stage 3), ovaries (stage 1), and cervix (stage 1). There was also a little clear cell in one of the ovaries. Abdominal wash was positive and lymph nodes weren't sampled as I didn't have an obgyn/onc do my surgery. My gyno did the surgery himself and didnt tell me about the obgyn/onc until after my surg. The ob/onc opted to not go back and take out the lymph nodes. Oh, my CT and pet CT were clear.
Treatment has been 6 rounds of carbo/taxol 3 weeks apart. I'm finished with that and now I will be undergoing 25 rounds of radiation and 3 brachys.
You ladies all sound so wonderful and it's been a pleasure to read your stories and see your support of each other. I hope we're all around for a long, long, long time!

Hi Lisa,

Glad you joined us! It sounds like you are getting the aggressive protocol and good news from your PET and CT. Sounds real positive to me. You sound very positive.

Best wishes to you. Mary Ann

Welcome to this site. I am sorry to hear your diagnosis, but I have found positive support from everyone here. I am happy for you finishing your treatments. What a relief! I am glad that you are feeling great and hope for positive news for you on your 3 month check up. I understand how you feel with the fear that your cancer will return somewhere else. I try to think positve and stay busy, but it seems to be always in the back of my mind. I take one day at a time. I hope that you find peace and enjoy your summer.

Jean

Hi Katrinka,

Great CA125 number - 4!!! terrific. I got down to an 8. My dr. said "don't freak out if it goes to 11" - well it sure did next time but now back down to an 8 without any more treatment. So I imagine it vacillates a bit and I think normal is anything below 35 or so. We have a bit of wiggle room.

I just had my 2nd post treatment check-up and was told the WE are the best indicators if there is something amiss - any change in intensity, duration, or frequency of symptoms. Any change for 2 weeks is a concern for us.

Best wishes. Mary Ann

Thank you for your reassuring, common sense words Mary Ann! I feel really great - I've been back to using my elliptical after being sedentary for over a year. Have a good energy level, have no symptoms, see myself building up and working harder on my machine - and yet I have moments of such panic when I think about this upcoming appointment on Monday. I keep telling myself I need to get a grip, and I can't get like this each time a three month check comes along! Trying to keep only positive thoughts until I am told otherwise.

-Kat

Sorry for your diagnosis, but glad you are doing so well with your treatents. I too had the robotic surgery and had the sandwich treatments. I did well with the first three treatments. Had my external and internal radiation and had some nausea with the treatments, but have a sensitive stomach. I had chemo number 4 and my white blood cells count dropped and I had an infection and ended up in the hospital for a week with IV antibiotics. Then 12 more days of antibiotics at home. Finally was able to get chemo #5 yesterday, and hope it will be uneventful like the first 3 were. I know what you mean about the wig being hot. I pretty only wear mine when I go to church, otherwise I wear a ball cap or newsboy cap when I go out. Good luck with you checkup on the 20th. I hope all goes well for you. In peace and caring. HUGS to you.

Hi Kathy! I'm sorry to hear that any employer, least of all an internist would not be supportive of you during treatments for cancer. That guy (or gal) needs a good shaking. You are obviously not new at all of this (I'm sorry for that). You have so much on your plate right now trying to figure out what's next. Take one step at a time, and worry about your boss later. I hope you will get good advise along the way on how to handle working while your counts are at their lowest. (Perhaps your boss will come around when it's time).

Speaking as someone who has not dealt with the hair loss all that well, there are some great looking wigs! I've had numerous compliments from people on my "new hairstyle" - they are completely unaware that I am wearing a wig!

Wishing both you and your dh all good thoughts!

-Kat

Thanks Kat for your kind words. I keep hearing wigs are so hot, and I already get hot easily. More importantly, I need to work and am hoping the chemo will go smoothly. Will take your great advice and just enjoy each day we are given and try to live it to the fullest.

-Kathy

Under "normal" conditions I don't feel like my wig is hot. Outside in the summer heat - I'd have to say yes! I'd like to whip that thing off and let my head breathe! lol In an office atmosphere I'd like to think you'll be ok.

Hoping your treatment will leave you feeling well enough to keep your work schedule!

-Kat

Sorry to hear of your diagnosis, but glad you have only stage 1. Glad you will only have to have 3 cycles of the Taxol/carbo treatments. I can understand you being scared about the side effects. I think we all worried about them and found out they were not as bad as we had anticipated. The fear of the unknown always seems to be worse that what actually happens. They do such a good job with pre-medications and post medications that the side effects are minimal. Of course you won't really believe all of this until you go through it yourself. That's all natural. Sorry you have fears of being exposed to to patients coming in to see the doctor. I am an RN so I know what you mean. What about a Family Medical Leave, can you qualify for that while you get your chemo? Or any type of disability for that time period? You certainly have you hands full with your husband's diagnosis to. You will be added to my prayer list. Good luck with your treatment, and feel free to vent any frustrations or fears and ask all the questions you want. Someone will have some answers for you. In peace and caring. HUGS to you.

What a nice post you left. I'm not sure if I have ever met such a nice, caring group of women. I will heed all of your great advice. As far as a Family medical leave or disability; I am still off work from the surgery..1 month. And my GYN/ONC wants me to start the chemo soon. My office is very small; just 3 Docs with 3 nurses and no backup help. I work with a Doc that is somewhat narcissistic and he gets quite upset when I am off. It's a concierge practice, thus my worries about looking ill or someone noticing I have a wig on. But if it comes down to working or my health, I have decided I will not hesitate to take a leave. Your info about the pre and post meds I should know, as I sat through all of my husband's chemo. I guess when it's about "you" things are easily forgotten. Now that I realize there are many out there with lots of info to share, I am going to take advantage of all of your wisdom and caring. Thank you so much for all you wonderful women do on this site. Best to you also, RO.

Kathy,

I worked during my chemo and hated wearing a wig. I advise that you ask your oncologist about working in the setting you describe. Mine said "good" when I told him I was working - I'm a clinical social worker - I probably was not as exposed as you to the general public. I think we need to be practical but not paranoid or else we will make ourselves sick emotionally. I ditched the wig and went to work and everywhere else BALD. It eventually was "normal". I wish you the best with your treatment. Hang in there and be strong. You will do fine.

Mary Ann

Thanks for your response, Mary Ann. I would love to just go bald. The Doc I work with would absolutely freak out. He has a concierge practice, which says it all! My face is very chubby and I doubt I would look as cute as you, from the great picture you have. I will ask my oncologists...I have 2 now, to pick from, about working. Pretty much have to work with this economy and my husband's cancer, with a possible layoff next week. Like I said before...many twists and turns in our lives. Just trying to get through each day with the most info about my disease and treatment options. I am so happy I found this site and have gotten all this positive feedback. Be well, mary Ann! Kathy

Would you mind letting me know who your doc is?

Thanks in advance,

Zarka

Danielle

Am so sorry to hear about your diagnosis. Know you have a full plate with also having 4 children to care for. Am so glad you connected with this site. There are so many knowledgeable and caring women who are here to share info and support each other. Ask lots of questions. Are you having a gyn oncologist do your surgery?

Best to you! Karen

my Gyn is doing the surgery. I really trust her she delivered two of my children and one of those was by an emergancy c- cection and My son and I turned out fine then..She wanted to try to preform the surgery vaginaly but a friend of mine who is a gyn doc said she should just go through the c-cection scar to avoid any complications. I also know that on august 4th i will be on my period and I am such a heavy bleeder ( which started the symptoms) and have become anemic because of the heavy bleeding for a year and that scares me alot getting this done. I will be seeing an oncologist afterwords to make sure that they did get everything since it only seems to be in the lining of the uterus. I will see her the 27th for pre op but not sure what questions i need to ask since this is all so much. I am scared of surgery in general I guess the whole thing of dying while being but to sleep and not knowing anyone who has been through this. As for the treatment afterwords I am not worried I can get through that whatever it may end up being. thanks for replying to me it does make me feel better talking to those who have been through this

Hi Danielle and welcome to this discussion board. I am sorry to hear that you are going through this. I think you will probably feel so much better after having the hysterectomy. I know how tiring being anemic can be. If I may offer... research has shown a greater success rate in patients who have a gyn/onc do the debulking and staging surgery. I know you trust your gyn to deliver your babies, but the gyn/onc specializes in this area.
I will pray that you will soon be on the road to recovery and back to your life with your kids!
May God Bless you!

Good luck with your surgery. Sorry to hear about your diagnosis. I hope you are having an gyn/onocologist do you surgery, so proper staging can be done. That is so important so you know what you are dealing will. I hope all goes well for you. Being a single mother of four has to be enough of a challenge for you without going through all of this. I wish you the best. Feel free to vent your feeling and ask all the questions you may have. In peace and caring. HUGS to you.

HAD MINE 5 MONTHS AGO. RECOVERY WAS LONG BUT NOT TOO BAD. ARE THEY OPTING FOR RAD TREATMENTS WITH SURGERY OR SURGERY ALONE?

Welcome to this site. I am sorry to hear about your diagnosis. The ladies here have been very helpful and encouraging to me. I know that you have a lot going on now with your upcoming surgery, but we are here for you. Try to take it one day at a time. You and your family are in my prayers.

Jean

Sorry for you diagnosis but glad it is Stege 1 B. I had my 28 external radiaiton treatments and a 28 hours internal radiation treatment. I had minimal diarrhea from the treatments. I did have nausea from the radiation but I have a sensitive stomach. I only know one other person who had the nausea. The humiliation of having the radiation in the area you are having it was not as bad as anticipated either. The radiation people were very professional. I hope you have a good experience. Good luck with your treatments. Feel free to ask any questions. In peace and caring. HUGS to you.

thanks for responding and for your help. i heard rad is worse than chemo, and watched my grandmother struggle with her uterine cancer and continuous chemo treatments, so im kind of scared of how bad it really will be. i guess im really struggling with the fact that im going thru all this. its hard to talk to my fiancee or family about this. i feel like theyre being burdened. and the truth is, i think i'm taking this so hard because ive been isolating myself from everyone, trying to spare them and yet,trying not to feel so alone. i guess i just want everyone to come around and say that they are in it with me and not going anywhere, as opposed to the "if i dont see it it isnt really there" attitude people in south texas have, and my family especially. i tried to find support groups in my area and only found one. It was sponsored by a local hospital, but it was like going to a seminar on breast cancer awareness, which is okay but not what i need. im just tired from what i thought was 6 months of worry and doctors, but now seems never ending. is it just me and my bad coping skills that is making it this hard, or is it like this for everyone? i feel so overwhelmed lately, worrying about my little boy and his future, about what this is doing to my parents, about my siblings and about being too tired or in too much pain to have a normal life with my fiancee. i see everyone frustrated with me not being myself, but its like im not allowed to tell them im scared or anything, because thats just being negative or feeling sorry for myself. i guess my question is.... how long am i expected to be in treatments, until i can say im cancer free? did you go thru this for years or is it more recent? do you have a strong support system? are their resources for emotional support? am i just going insane and handling the whole thing really wrong? thanks for letting me vent and for replying yesterday. it helps to not feel so alone. all my love . . . jen

You are struggling and it's understandable with all the uncertainty you are feeling.

It helped me to talk to a counselor - someone objective. My work has an EAP program and we can get many sessions free. Perhaps talking to someone a professional would help you process your feelings - in addition to this site and other support groups in your area.

I remember making a conscious decision early on to NOT just be a CANCER PATIENT. I think this helped me get back into my routine quicker which in turn helped me in my treatment.

I wish you the best. Stay strong!!

Mary Ann

Jen,
I am so sorry that you are going through all of this. My doctor told my family from the very beginning that they needed to let me feel and vent whatever feelings I was having. He told me not to hold back the emotions, that I needed to express them for my own well being. I still have good days and bad days and there are a lot of days I feel like I need someone to talk to besides my family. You might check at the cancer center that you go to. The one I go to has a psychologist just for the cancer patients. I never have gone, but have considered it several times. You might check into that. Oh, and you can vent her any time. It's okay for you to feel, angry, anxious, scared... even negative and feel sorry for yourself sometimes. You are young and cancer is scary and quite frankly depressing!! There are so many unknowns and you are so young and this has suddenly changed your whole life. You have every right to have all of those emotions and feelings and many more! You are not alone.
Love and Hugs! hang in there.

Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.

My heart and prayers are with you. There are lots of wonderful and strong women on this site to help you through your journey.

MIND, BODY AND SOUL.

Hugs.

What a story you have. I am so sorry you are on this journey with all of us. Feel free to vent or ask any questions you may have. Good luck with all of your treatments. You and your beautiful family will remain in my prayers. Take it one day at a time. In peace and caring. HUGS to you.

You have been through ALOT!!! I'm sorry that you are dealing with so much. It sounds like they are aggressively treating your cancer. I recommend the book "Getting Well Again" by Carl Simonton. This helped me so much during my treatment and still. I also have UPSC- stage 3a.

Mary Ann

Welcome to this site. I am sorry for all that you have been through and you have already been through a lot. You and your family are in my prayers. You are not alone here.

Jean

Welcome to this site. You have come to the right place for support. We all vary in age and diagnosis, but I have found that there are many knowledgeable, caring people here. It is very easy to relate to each other. With your surgery behind you now you begin your radiation. I had 5 weeks of external IMRT radiation and 3 days of internal radiation. The only side effect that I had was being tired all the time. Everyone that helped me with my treatments were very kind. Unfortunetly it is something that we have to go through to get well. I hope that you do not have any side effects and are able to tolerate the treatments.

Jean

Welcome to this site. I am sorry to hear your diagnosis. There are several ladies on this site who also have UPSC. I hope that you find comfort here as were are all here for each other. You are in my prayers.

Jean

Sorry to hear you story and that you are one the the same journey so many of us are on. I am sorry for the loss of your Precious canine girl. I know how devastating that can be. I am sorry you have no family, husband or children to help you through this journey. I hope a friend steps forward and can be a support for you. It has amazed me friends that I did not expect have been there for me. I understand the tears your are feeling, too. We all have had them. Some days are worse than others, but that is to be expected. Take it a day at a time. Your best attribute "your hair" will come back. It is hard to lose it. I lost all of mine before the second chemo treatment. I had three chemo treatments and then radiation. MY hair had come back before my 4th chemo, but fell out before my fifth treatment. Now it is back to wearing hats when ever I leave the house. But I know it is temporary. I think I miss my eyelashes more than my hair. A friend gave me a magnifying mirror to put on the eyeliner, and it really helped. It is pretty scary to see all the other wrinkles on the face though, so I just focus on the eyes. Feel free to vent or ask any questions you may have. There are so many questions when you are facing UPSC. Take it one day at a time, and enjoy each day. In peace and caring. HUGS to you.

Hi Linda

I too had recently retired when diagnosed and it comes as a real shock.

Whilst prepared for losing my hair (and eyebrows, eyelashes etc. although not until later)
it comes as a quite a shock. As soon as it started to come out I got my husband to cut it all off and then use his beard trimmer to shave my head. From what I've heard from others doing it this way was far less upsetting than 'shedding' hair over days/weeks.

I've been to a Look Good, Feel Better and found it very enjoyable in all ways.

Hope you cope with the treatment. I had some homeopathic pills which I'm sure helped me through the worst and am now taking isacador drops to help me recover.

Glad you found this site, so you can "learn as you go". Sorry you had such a hard time with you chemo treatment. I hope the next ones go better for you. Keeping hydrated is very important. It is hard to not have the energy you are used to having. I figure my body is telling me it is time to rest. I try to listen to it. Glad you found a Look Good Feel Better program. I too thought it was very helpful. Gsave great make-up tips especially for the eyes. When my hair started to fall out I wore a cap and then went and combed my hair every couple of hours to keep it from falling all over everything. I wore a cap to bed, to so I did not have hair in my face while I slept. I did not shave my head like so many did. I keep telling myself "it's only hair", but I do miss it. It will come back. Good luck with the rest of your treatments. Take care of yourself. In peace and caring. HUGS to you.

ENJOY THE WELL DESERVED BREAK, LINDA. PRAYERS WILL CONTINUE TO COME YOUR WAY! KATHY

This journey is tough. I remember alot of the cards I received from friends when I first learned I had cancer. The ones that especially impressed me were the ones that said "take heart...be strong....if you can build a kitchen you can beat cancer...etc".

So I share those sentiments with you all - take heart and be strong. Let's fight the fight and let others help us. And let us enjoy LIFE - the gardening, the friendships, and the fun that is there for us too!!!!

God Bless all of us on this journey.

Mary Ann

I like that Mary Ann. I also want to remind everyone to laugh. Sometimes I laugh to fake people out and before I know it, whatever was upsetting me doesn't seem quite as bad.
Happy thoughts to everyone!

Mimi, from Ft Myers, FL area (Mary Ann/Daisy....would love to connect)
Had total hysterectomy in Jan of 07. CA cells were found in the washings but was told no treatment was necessary.
One year later started to have problems and was found to have massive tumors in my abdomen. Had a major "debulking" in April of 2008 and started chemo about 6 weeks later.
(I requested that no lymph nodes be removed unless they looked suspicious, as I have had lymphedema in my right arm since a radical mastectomy in Feb of 1988).
Had six rounds of taxol/carbo platin and finished in Sep of 2008. Now, my PET scan shows numerous small tumors in my abdomen and I will have surgery next week to obtain samples of the tumors for MOLECULAR testing, with the goal of finding a new targeted drug that will be appropriate for my particular case.
When I found this site a week ago, I tried to get to this group to post a question regarding TARGETED drugs and whether anyone was on one, but I couldn't get to it. Now, I find myself on this site, and can't find the posting of my original question!!!
As you can see, I'm technically challenged.
I think it is wonderful that all of you have come together to support one another. I had asked my doctor for any others with UPSC and he never gave me a contact. I assumed the worst.
Now that I am officially on the roll, is anyone else taking one of the new targeted drugs?
Which one and how is it going? Side effects, etc?
Take care, Mimi

dear linda,

thanx so much for your response; i appreciate all of your thinking, esp. re: radiation. i actually did bring it up and the surgeon didn't seem to be pushing it at this point. i did ask if i didn't do radiation now, but needed it later, would it still be possible and effective, and he did say yes. i'm getting a second opinion with another gyn/oncologist monday, one of the few women in this specialty, and will ask her as well. my doctor was so hurried, and our conversation was interrupted by an emergency call and that was basically that. we left with plenty of unanswered questions. i will do the chemo, however.

one question re: this board: it's been a little difficult for me to navigate. i'd like to post on the upsc board especially, can i copy and paste my prior post, the one to which you replied? is it possible to delete a post once it's been posted (one's own, of course).? thank you, linda, no rush on this. i hope you're enjoying your break. (it's so confusing to me; i think you may still be on your break.) thank you again for doing so much research, taking the time to share what you learn, and in such a heartfelt manner. you're a real mensch!!

warmly,
maggie
maggie

dear linda,

i so appreciate your responses, so will miss them if you don't find an internet cafe at the beach. but, don't try to hard to find one.... we'll wait eagerly for your report when your return. i'm so glad you're having this wonderful time with your family, and can appreciate it so much. right now, in part to you, i am not worrying about radiation. doctor is insisting on the chemo within next 2 weeks, so that's what i'll do. period. one thing at a time. my partner and i are trying to get out of town for a few days, hopefully to the beach as well, before treatment starts, so we can enjoy time together while i'm actually feeling pretty darn good, and nearly recovered from the surgery. given how good i feel now, it makes having this damned cancer all the more unreal; of course the scar is certainly a reminder lest i forget, which of course never happens, really. still, it feels good to feel good.

it struck me when you said you'll do your best to live another 30 years, but would make 5 years enough and make peace with that, if that were the case (hopefully it's 30). at this point, i'd be thrilled with another 5 years, and anything more would be beyond the beyond.
i'm still fairly new with the diagnosis and trying to comprehend what it means to the extent that i can, so i can imagine i'll go though a number of changes as time goes on.

in the meantime, to you linda, and all our sisters, i'm so glad you're out there (and so sorry any of us has to be here), thank you, and may we all take in as much pleasure and joy as we can.

maggie

After reading everyone's posts I was sweating it out that I had cancer. Was scheduled for a da Vinci (robot) assist vaginal July 22 and doctor panicked at the last minute saying I needed an endometrial biopsy after looking at other doctors records and if cancer he wouldn't do the surgery, I'd have to find an oncologist to do radical. About 9am July 21st the nurse called (we were sweating bullets as you could imagine) and she told me "no cancer". Thank God, went through with the surgery and am now recovering at home. I can't tell you how much you guys meant to me to be there if it had been positive as I really couldn't share or get information from anyone else except someone who had been there. Thanks for all the support and I will always keep you all in my prayers. Mary

I had posted an indepth reply to your questions, laying out all of the things I do on a daily basis to try to slow or kill cancer cells, but before I could send it, it disappeared. Feel free to call me and I'll be happy to answer any of your questions with opinions I've developed over the last year and a half of health research.
947-517-9417.

As always, love and hope to us all,
claudia

I found your comment re nickel exceedingly interesting as I have a horrible reaction to nickle. Once my ear grew so large, I looked like a donkey. Another time my face got swolled to the size of a grapefruit when exposed to food cooked in a pan with nickle and allowed to sit for a few hours.

Look forward to hearing from you.

My doctor is not recommending radiation for my stage 3a UPSC. At first I was worried that I was being UNDER treated by now after he explained I feel better. The rationale? Recurrence in vaginal cuff is VERY CURABLE. He does not think the risks of radiation and the damage it can do are worth it. I appreciate his thinking. Sometimes the TREATMENT is worse than the disease.

I guess time will tell for all of us which is the better way to go. I encourage all of you to ask these types of questions of your doctors.

Hi Cathy! I'm sorry you have had to join us here, but I am glad to hear you are doing well after your first chemo treatment. It sounds like I had a different course of chemo than you are having, so I can't quite comment on your side effects, perhaps someone else here can be more helpful.

I don't like that you were given survival "dates" - I think there is so much that is individual with cancer and treatments, I just don't believe in that.

Stay strong and I hope you continue to do well with your treatments!

-Kat

Sorry to hear your story. Do you have a gynecological oncologist? If not, this is the best specialist to have.

I am not an expert in any of this, but am continuing to learn. At first I was blissfully ignorant - fully trusting my doctor. I think doctors would prefer us to be quietly accepting of their recommendations. But I'm glad I have and continue to learn about my cancer and treatment and have started to ask questions and obtain answers. This discussion board has been very helpful.

I have stage 3a uterine papillary serous carcinoma (UPSC for short)- diagnosed last Sept. It is rare and aggressive and highly recurrent. My regime was 6 rounds of taxol and carboplatin which I finished in Feb. I had few side effects and handled treatment well. My hair started falling out at the 2 week mark (right on schedule). I finally shaved my head - it was less depressing for me than looking at the few strands that remained.

Are they checking and monitoring your CA125 (an ovarian cancer marker that is also used for some uterine cancers like mine)? I also recommend you get COPIES of all your medical records now and along the way. You may need this for second opinions, fighting insurance companies (like I've had to do), and for your own knowledge and tracking of your progress. Also check the NCCN guidelines for treatment guidelines. See if functional profile, oncogene, and hormone testing was done on your cancerous tissue. You may be eligible for a clinical trial. ASK LOTS OF QUESTIONS.

I recommend you read O. Carl Simonton's "Getting Well Again". This will give you HOPE that you can be cured and/or get in remission. Stay positive and strong. Your mind is so powerful. And remember that new treatments are being developed to give all of us better odds.

Best wishes. Keep us posted. Prayers are being sent to you.

Mary Ann

I am getting day 1 Cisplatin day 2 Taxol and the third day white blood cell shot.
my doc is a gynecological oncologist and very obnoxious, he has to always be right. started with infection in my staples, urgent care doc said WOW that must hurt! and gave me antibiotics, seen my doc the next day and he said , "that is not infected, that doc doesnt know what he is talking about" so I said well I guess I should stop taking the antibiotics!? , well no was his answer.
that is the smallest problem, problem 2 I am on medicaid , this is good in some respects that I am not worrying about bills so far. bad thing, I am not sure what is or is not prescribed due to the "rules" medicaid has, like generic for everything.
not sure what the ca125 is, the doc has a nurse that does EVERYTHING except operate and exams, she says there is no way to know if the chemo is working for quite a while. I am not accepting that. but again all I have to deal with is the doc and nurse, I do have the chemo nurses but they are just nurses. so not many to discuss this. the doc does not want to talk to me, I have to pry everything out of him and it is usually tecnical jargon I can not understand. I have a check up with him next week. any questions I should ask. or try to ask?

This comment has been removed by the Moderator

Patricia

I know it is frightening to read about all of the "possible" side effects, but everyone reacts differently. I had very few side effects.... (I had taxol and carbo after I completed radiation.) The gyn onc. told me that I would have more difficulty keeping my counts good since it was following radiation, which can do a number on the bone marrow.I had virtually no nausea and absolutely NO vomiting. I did feel a little "quesey" a few times. Yes, I lost my hair and that was hard for me, but it is growing back in. Mostly what I felt was fatigue....just not much zip. About day 5 I was pretty much back to normal, except when my hemoglobin got too low...then I was REALLY tired. A couple of units of packed cells later and I was good to go! I did have a few treatments delayed as my white count and/or platelets were too low. I did take Neulasta shots 24 hours after each chemo treatment but I had very little bone pain and that was gone in 24-48 hours. My biggest issue has been numb and/or painful toes....But overall, in one's fight to cure this nasty stuff, it has been a very small price to pay.

Please don't give up! Keep asking lots of questions.

You can do it!!
Karen

Patricia, I'll try to answer the best I can.

According to the NCCN Guidelines (which my GYN/ONC group uses), after surgical debulking adjuvant treatment is decided by the patient's STAGE. Chemo is a primary treatment for UPSC - papillary serous carcinoma. I didn't question whether to have this or not. EVERYTHING has side effects and I guess we just weigh the pros and cons. My head spins just reading the inserts for prescriptions. I also had fatigue and some neurapathy. I still have some in my toes after 5 months but it is getting better with time.

Radiation is another adjuvant treatment and there are side effects with this. I have stage 3a UPSC and my doctor in so many words thinks the benefits do not outweigh the risks FOR ME. He thinks that I have very good odds NOT to have a recurrence and if I do have one in the vaginal cuff he said he has a 90% cure rate for this. He is very well respected in the field so I am going with his thinking. I think we all need to make these decisions with the best info and discussions with our doctors. Many women here have stage 3c for which radiation may make more sense.

Re: CA125- a blood test. In my case, it was believed to be an indicator of treatment response. Mine dropped dramatically after the first chemo and the level was checked before each treatment. CA125 may not be a reliable indicator for all of us.

Re: hormone testing. My first doctor moved and my new doctor (in same practice) ordered hormone testing on my original tissue just to gather info for future possible treatment. I really do not know much about this but there has been some posting on this subject somewhere on this discussion board. Others have more info on this than me.

The body has great healing capabilities and so does the MIND. I pursued other non-medical treatments. I had weekly "healing touch" sessions during the months of chemo and meditated several times daily. I went to a counselor to deal with stressors in my life and how I could change the way I handled them. The book, Getting Well Again by O. Carl Simonton really helped me and continues to - sorry I'm such a broken record about this.

For what it is worth this is my 2 cents. As many have said here, we are all different and not statistics. We all are faced with making these decisions. I wish us all the very best in this journey. We need all the strength, HOPE, and positive thinking we can muster. God bless.

Mary Ann

thanks all for the welcome and Patricia, well I this is the second doctor. first one general gyn did biopsy and diagnosis of cervical cancer, then disapeared for a week, couldnt contact him and he had no one else to answer my questions, so on came second doctor a specialist. I am on medicade. and I am told there are 2 other specialists in michigan, detroit and ann arbor which are 4 hrs away, I am 1 1/2 hr away from this doctor and hospital where I get the chemo! and 45 min from the closest hospital where I get the white blood cell shot. so to answer your question, no there is no other doc I could go to that has the knowledge this doc has, I just have to get him on the same page as myself. which may be quite a job.

Cathy,

Maybe a little homemade goodie the next time you see him might warm up his heart a little. He may remember you and appreciate you. The best way to a man's heart, etc....

Just a thought. Mary Ann

you can goggle anything you want to know about

i am like you ...i know no one who had cancer or has cancer...i depend on blogs like this

i belong to another blog email me at maryln3@aol.com i will send you all the research you need on stage 4....i have stage 1c with a agressive tumor....my doctor
never did a lymoph node biosy so i am haveing another surgery with another surgeon on 8/6/09...

when i get your email i will help you

Hi Cathy - are you still visiting this site? Just curious where you are in treatment these days. I am one of the few other stage 4's here and, like you, I've found it very hard to find survivors to network with. Would love to hear from you. What histologic type is your cancer by the way?

I can be reached at paigeldonnelly@gmail.com

I came to this site to find others who have endometrial cancer - I've spoken to a lot of women at work who had hysterectomies, but none had cancer along with it. July 1st I was diagnosed with Stage 2 Endometrial / Cervix cancer. MRI shows the tumor is half way through the wall. Dr is recommending radiation treatments first, which I will start mid August - then internal radiation, followed by a hysterectomy. I'm just trying to learn what others have experienced in this arena. What type of supplements are you taking to keep your body strong through this experience?

It's amazing to see such a support group. it's mind boggling how many of us are experiencing this disease. My heart goes out to all of you.

Welcome Ro,

Yes, this is a great place, isn't it!!

I just took my multivitamins. But my chemo nurse recommended Purity brand vitamins because they are better at providing nutrients - She said the regular ones don't absorb as well as these. I am considering buying these special ones but haven't yet. I'd be interested to know what others are using and where they get them.

Glad you joined us. Mary Ann

I NEVER HEARD OF THAT BEFORE RADIATION AND THEN A HYSTERECTOMY BUT IT SOUNDS VERY LOGICAL TO ME....

MY TUMOR WAS THE SAME AS YOURS...BUT I GET RADIATION AFTER THE HYSTERECTOMY

The oncologyst recommended it because he said that if we kill off the cancer, or shrink the tumor - it'll be safer for him to operate - plus we all know what happens if the dr accidentally cuts into the cancer - I'll have it more places than I want it. It made sense to me.

As for vitamins - I'm taking "over 50" Garden of Life - whole foods have it - it also has probiotics in it - my chiro, who is into holistic healing - recommended it to me... I don't usualy take vitamins, as they make me sick, but so far, they haven't bothered my stomach or made me nausious. Post surgery, he's suggesting - goldenrod / echenisia drops under your tongue to promote healing - and yogurt for your stomach as well - have to put the good bacteria back in your body. (p.s. pardon my spelling)

Ro

Welcome to this site and I am glad that you found it. I did not take any supplements during my radiation treatment. I tolerated the treatments well and the only side effect was tiredness. I did get a lot more rest. I had my DaVinci surgery before my radiation. I think that you are the first that I have read that is getting it after treatment. I hope that your treatments and surgery go well with no side effects and that you heal quickly. Like you, I did not know of anyone who had uterine cancer, but lots of women who had an hysterectomy. This site has been very helpful. My stage and grade was determined after my surgery. You are in my prayers.

Thanks Bella - I think we're all rooting for each other. I'm sure once I begin the radiation treatments I'll meet more women experiencing the same thing. I've read a lot about the DaVinci surgery - did they also check your lymph nodes with that type of surgery? Where I'm going, they're not offering that method - they're saying I'll need another "bikini cut". But I have time before I even need to think about that.

You asked if the doctor checked my lymph nodes. After surgery my doctor told me that my lymph nodes looked questionable. He removed 54 and at my follow up appt. he said that they were all clear. I should have asked if they checked all 54 or a percentage. My doctor said before surgery if he was not able to do the DaVinci, due to a large uterus, he would do another type of hysterectomy. If he did the other type, he would still check my lymph nodes. I ended up having the DaVinci. Did the doctor tell you that he couldn't check your lymph nodes during your initial surgery?

Hi Bella09

I think the hospital I'm going to doesn't have that equipment - but I will ask. They're saying since I need a full hysterectomy and ooperectomy, and removal of the lymph nodes they need to do a bikini cut.

Glad to hear your lymph nodes were clear - what a relief!

I had a total hysterectomy, bilateral salpingo oophorectomy, and removal of lymph nodes - all done robotically. Very slick.

Try drinking pydealite (sp?). It's given to children who are ill to keep their electrolyites up. Salt is good for your body but can thin your blood and you can bleed easily after chemo/radiation treatments. At least I did. Bruised easily too. Best of luck to you...