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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

yerba
Posts: 4
Joined: Mar 2009

Linda,

Thanks for welcoming newbies here.

I go by "yerba" (I love plants.)
Diagnosed with endometrioid endometrial cancer, on biopsy, 1/23/09.
I'm taking 80 mg Megace/day and in the process of looking for any alternatives to hysterectomy (if anyone knows of any cases of good outcomes w/o hysterectomy.)
I live in Northern California and am going to see a gynecological oncologist near Stanford University April 10.

**
Linda, I see you offer a lot of support and information on here for others, and hope that all your generosity comes back to you a thousand fold in support, and healing through your treatments. Best wishes.

yerba

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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.

Crystalinda
Posts: 1
Joined: May 2012

I also live in Southwest Florida (Naples) and was recently diagnosed with UPSC. Am currently awaiting robotic hysterectomy, etc on June 19. Would love to establish contact. I see that you are active on the CSN site (over 1000 posts), and would like to get to know you. This journey is better traveled in company.

cindcurran
Posts: 3
Joined: Jan 2010

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

antigone_42
Posts: 8
Joined: Jan 2011

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.

zarkapopovic
Posts: 30
Joined: Jan 2011

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

Zarka

zarkapopovic
Posts: 30
Joined: Jan 2011

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

Zarka

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

My family all calls me Ro. I have Stage 3 C UPSC with 5 out of 21 positive lymph nodes, and metastatic cells in the abdominal washing. I had the DaVinci Hysterectomy on 1/5/09. I finished 3 rounds of chemo Taxol/Carboplatin. Will start radiation therapy on April 6th, and then have my last 3 rounds of chemo. We winter in Florida and will be returning to Illinois for the radiation therapy and last 3 chemo.
Linda thanks for all your information you share with us and keeping us organized.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

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.

Kris Ann
Posts: 26
Joined: Jan 2009

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.

bonniesue
Posts: 126
Joined: Apr 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

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.

RoseyR
Posts: 464
Joined: Feb 2011

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

bella09
Posts: 37
Joined: Mar 2009

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.

deanna14
Posts: 738
Joined: Oct 2008

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.

bella09
Posts: 37
Joined: Mar 2009

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.

bamalady
Posts: 1
Joined: Jul 2011

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.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

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.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

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.

griffy2@verizon.net
Posts: 4
Joined: Oct 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

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

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

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

cookie1948
Posts: 79
Joined: Feb 2009

Hi,
I'm posting for my mom and have found this site invaluable. My name is Linda, but there are so many Lindas that some people call me Cookie. She had total abdominal hysterectomy on March 12th as she was told she had uterine papillary serous carcinoma. The pathology came back as stage 1a, she is not having treatment. She is 85 and oncologist/gyn stated if she was younger maybe some treatment, but he is hopeful she needs none. Caught in earliest possible stage per oncologist. It was contained in a polyp inside uterus.
I will remain watching this site as it is so informative and helpful.
It is reminding me that i need to go for check ups myself and keep putting it off. Thanks to all,
Linda aka Cookie :)

loveable karina
Posts: 1
Joined: Jul 2009

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

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Hi. I'm Barbara sometimes Barb. I'm 59 years old and live in Rhode Island. I was diagnosed with stage 3C UPSC in August 2007. Before that I was diagnosed with DCIS breast cancer, had a lumpectomy and was treated with Tamoxifen until the uterine cancer diagnosis. For the UPSC I had a total abdominal hysterectomy and oophorectomy. Lymph involvement was extensive- I had 39 lymph nodes removed, 7 of them showed metastasis. This was followed by 4 rounds of carboplatin/paciltaxol , followed by full abdominal radiation(can't remember how many weeks) and 1 round of internal vaginal radiation. It will be 1 year since my treatments ended. I feel great and grateful. Wish me luck ladies for this Monday- I'm going in for my 3 month evaluation. I follow this site regularly for the knowledge, strength and support. Thank you Linda for bringing us together. It was very lonely there for awhile.

Kris Ann
Posts: 26
Joined: Jan 2009

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

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

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?

Kris Ann
Posts: 26
Joined: Jan 2009

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.

mas910's picture
mas910
Posts: 5
Joined: Mar 2009

Hi, My name is Margaret and I am 54 years old. I was diagnosed with breast cancer in 1997, had mastectomy, 6 months of chemo and 6 weeks of radiation. Had one positive lymph node. Was on Tamoxifen for 5 years, ending in 2003.
I had a TAH January 21, 2009. Found UPSC in a polyp in my uterus. I consulted with a gyn/onc at Ohio State University. I am scheduled to have lymph node biopsy with DaVinci robot on April 1st for staging. My gyn/onc has already said I will receive 3 rounds of taxol/carboplatin if all nodes negative and more chemo if any positive nodes found.
I am an RN working in Hospice. This has really given me more insight to the patients that I care for. I guess there is always a silver lining if you look hard enough!
I absolutely love this site, have learned a lot from all of you! Thanks!

satarell's picture
satarell
Posts: 1
Joined: Mar 2009

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.

deanna14
Posts: 738
Joined: Oct 2008

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

lawyerserv
Posts: 5
Joined: May 2011

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

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

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

heaven78214
Posts: 2
Joined: Aug 2009

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?

rejoice1946
Posts: 8
Joined: Jun 2011

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.

nicolegarza's picture
nicolegarza
Posts: 27
Joined: Mar 2011

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

justada's picture
justada
Posts: 6
Joined: Mar 2009

My name is Ada. As of June, I will celebrate 4 years cancer-free. I was diagnosed endometrial hyperplasia in January, 2005. Was treated with meds until a biopsy in May of that year. They found atypical complex cells at that time. I was given the options of more meds, D&C, or hysterectomy. I chose the hysterectomy. They removed a fibroid at the same time. Pathology found stage 1 cells in both the uterus and the fibroid.
Sometimes I don't even feel as if I even had cancer, but I'm reminded of this fact every time I have a screening appointment. I pray that everyone here gets the best treatment and that we all become not only survivors, but overcomers.

shortmarge
Posts: 296
Joined: Nov 2008

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.

kellyw314
Posts: 51
Joined: Jan 2007

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 -

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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!

Angelasmom2
Posts: 146
Joined: Jul 2010

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

Double Whammy's picture
Double Whammy
Posts: 2338
Joined: Jun 2010

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

Ksfarmgal
Posts: 4
Joined: Jun 2010

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!

irishohiogirl's picture
irishohiogirl
Posts: 10
Joined: Oct 2007

Hi my name is Kelly with a screen name of irishohiogirl. I live in Westerville Ohio, I was diagnosed Sept 2007 at the age of 39 after a hysterectomy for fibroids with grade3 adenocarcinoma endometrial cancer. Had a second surgery for staging -removed close to 30 lymph nodes with 3 being positive one in my para aorta node. I am stage 3C grade3. Went through six weeks of radiation to abdomen and pelvis (still have abdominal pain and gastrointestinal issues as a result)and then 6 months of chemo Carboplatin and Taxol. Had lots of problems with white blood cells and received Neulasta after every chemo. Finished chemo in July and now have to have CT scan on April 9th after my check up CT revealed "conspicuous" enlarged lymph node in my chest. I feel blessed to be here and am grateful for all of you who share your journeys.

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