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Which UPSC Sisters haven't found us yet in our new site location?

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

Who is still among the missing of the UPSC Sisters? Do any of you have email addresses so that we can let any of the others who haven't posted yet here, know where we are? I wish they'd fix the 'email notification' feature since that would give them the link automatically.

california_artist
Posts: 850
Joined: Jan 2009

Hey,
Has anyone had any discussion with their doctors about hormone therapy. UPSC often is progesterone receptive and does respond to forms of progestin therapy, but neither of the oncologists I've seen have been willing to even test for progesterone receptors. My brother at the same age as I was when diagnosed with my cancer, was diagnosed with prostate cancer, a very agressive form, and was given hormone therapy when he asked, after his cancer returned a year later. The treatment brought his number down to zero, and he's been fine since, five years. So I was thinking and reading, and wondering due to the similarities about hormone therapy for me.
Ah, any ideas????
Love and kisses
Claudia
claudiaallen27@yahoo.com
906 864-9827
Thought I'd add contact info. Not much of a talker about the weather though.

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

Thanks for checking in; I wasn't sure my Private Messages would reach anyone. Until recently, I didn't even know this Board had that feature, and I had an OLD message waiting for me.

One of the women with ovarian cancer asked us if there was any emphasis on trying to reduce estrogen in the line of treatments for UPSC. She was taking tamoxifen to suppress it, and it was apparently working to keep what may be recurrent ovarian cancer at bay for her, and it was prescribed to two other women she knew with ovarian cancer. She noted that endometrial uterine cancer is typically encouraged by excessive estrogen. I am always interested in treatments for recurrent ovarian cancer because the initial treatment for ovarian cancer is so similar to what they treat us with (8 rounds of carboplatin/pacitaxel), and UPSC is considered highly recurrent too. The ovarian cancer Discussion Board is well worth reading because their oncologists are forced to be extremely creative and aggressive the longer they survive. I hope to NOT recur (UNDERSTATEMENT) but I want to have my game plan just in case.

So I looked it up, and ended up fairly confused. If you Google 'tamoxifen' and 'endometrial cancer', you'll see all kind of articles about how breast cancer survivors were more at risk of DEVELOPING endometrial cancer by taking tamoxifen, multi-year. So maybe hormone therapy for UPSC would be a different estrogen reducing drug?? Any hormone therapy drug names we could research? I have chemo next on Feb. 16th and the tamoxifen question is already on my list, although my oncologist already told me to take a 'research' break and is probably getting tired of all my endless questions. But I'm not likely to be passive about my treatment.

california_artist
Posts: 850
Joined: Jan 2009

Hey,
Actually, I wasn't referring to hormones used to suppress estrogen, but hormones used take up the receptors for progesterone, which UPSC is prone to have. The most common hormone replacement used is progestin and occasionally, RU-486 mega something or another.
The number of progesterone receptors can be an indicator of how well or poorly a cancer person might fair.
Wait, okay, I looked it up:"The most common Hormonal treatment has been progestational agents, which produce good anti-tumor responses in as many as 15 to 30% of patients. These responses are associated with significant improvement in survival. Progesterone and estrogen hormone receptors have been identified in endometrial carcinoma tissues. Responses the hormones are correlated with the presence and level of hormone receptors and the degree of tumor differentiation. Standard progestational agents include hydroxyprogesterone (Delalutin), medroxyprogesterone (Provera), and megestrol (Megace)."
I have printed out around 17 pages from this website and while I don't have the url, as it was in my early confused days of web surfing, I believe it is from the National Cancer institute. The papers give a phone number of 1 800 4 CANCER. In another place in the paper it says "Patients positive for estrogen and progesterone receptors respoond best to progestin therapy. A receptor-poor status may predict not only poor response to progestins but also a better response to cytotoxic chemotherapy."
Anywho, my take on it, and is totally my opinion, we women ought to insist on having our tumors tested for progesterone and estrogen receptors. I have asked two oncologists and neither is willing to do that. Anybody got a big stick I can poke 'em with???? Or do we not use sticks anymore??
Love and kisses,
Claudia
Ah, I'm not really sure where this goes, I respond one place and it seems to go somewhere entirely different.

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

I found a website article (circa 2006) that talks about this:
http://emedicine.medscape.com/article/258148-treatment
This is really hard to understand, but maybe together we can figure out what they're saying:

The use of estrogen replacement therapy (ERT) in women with a history of endometrial cancer is controversial in stage I, grade 1 endometrioid adenocarcinoma. The results of the recent Women's Health Initiative (WHI) have only clouded this issue. Although data are limited, patients who are in complete remission or who have surgical stage I disease and have undergone optimal treatment may be candidates for ERT. The Gynecologic Oncology Group study designed to evaluate ERT in early-stage endometrial cancer patients was closed prematurely because of the fallout from the WHI results. As a result, it is hard to draw any conclusions from the authors' data. Therapy should be individualized and extensive counseling regarding risks, benefits, and alternatives must be completed prior to initiating estrogen replacement therapy. An alternative for relief of vasomotor symptoms is clonidine. Raloxifene is a selective estrogen receptor modulator, has bone protective benefits without increased risk of endometrial or breast cancer, and may be used as an alternative. However, vasomotor symptoms may worsen with raloxifene.

While unopposed estrogens have an adverse effect in terms of risk, progestins have a well-known protective effect on the endometrium even when administered in combination with estrogen replacement.

Four routes of spread occur beyond the uterus:
1.) Direct/local spread accounts for the majority of local extension beyond the uterus.
2.) Lymphatic spread accounts for spread to pelvic, para-aortic, and, rarely, inguinal lymph nodes.
3.) Hematologic spread is responsible for metastases to the lungs, liver, bone, and brain (rare).
4.) Peritoneal/transtubal spread results in intraperitoneal implants, particularly with uterine papillary serous carcinoma (UPSC), similar to the pattern observed in ovarian cancer.

After tumor reductive surgery for extrapelvic/advanced disease at the time of laparotomy, adjuvant/adjunctive therapy is individualized. Localized radiation therapy is administered for CNS and bone metastases. Adjuvant whole-abdominal radiation therapy is reserved for those who have no macroscopic extrapelvic disease secondary to its high morbidity; however, this is controversial. Otherwise, these patients are treated with chemotherapy and/or progestin or antiestrogen therapy. Medroxyprogesterone acetate and megestrol therapy is efficacious for those low-grade tumors that are estrogen and/or progesterone receptor–positive.

Tamoxifen is an effective alternative when progestin therapy is contraindicated (eg, coronary artery disease, breast cancer). A 75-80% objective response occurs with estrogen and/or progesterone receptor–positive tumors compared to less than 5% in the absence of estrogen and/or progesterone receptor–positive tumors. Unfortunately, the tumors that tend to have intra-abdominal metastases are high grade and are less likely to be estrogen and/or progesterone receptor–positive tumors (15-41%). In cases of advanced disease, sending tissue, specifically from metastatic sites, for receptor analysis is useful. Metastases are receptor positive in 25% of metastatic tumors compared to 60% of primary tumors.

However, if advanced disease is present, progestin therapy and doxorubicin-based chemotherapy have a role. If the tumor is hormone receptor–rich, it may be amenable to progestin or antiestrogen therapy.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Linda you really are thorough with your research. Thanks for all of the information. Hope you are feeling stronger now.

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

I wish I were better at undertanding exactly what they are saying. My questions is: WHEN would this testing be done? Is this something that needs to be done on fresh tissue samples right after surgery? It doesn't sound like a blood test or anything non-invasive and easy. The stuff I pulled out makes it sound like this might be yet another 'tumor tissue test' that could be done after 'Recurrence' debulking surgery. (ARGH, I hate to think about recurrence!) But I am not 100% sure. Anyone alse know? This is something we may be able to ask at the Ovarian Discussion Board as many of them are of hormone therapy following recurrence and maybe even as a precautionery 'after chemo' ongoing treatment.

In my research I came across some other tidbits that I hesitate to post because there's no use worrying. But this article said that UPSC recurrence is most likely to happen within the first 2 years (happy news for Peggy as she has passed that anniversary), and that after surviving 2 years NED, the chance of recurrence goes way down. The article noted that UPSC is more resistant to carboplatin/taxol chemotherapy than ovarian cancer is, although that is still their recommended treatment regime. It noted that vaginal cuff radiation almost completely eliminates the recurrence of UPSC at the vaginal cuff and that is where the cancer is most likely to recur if it is going to recur locally. If it is going to recur more distantly the peretonial cavity, lungs, and liver are prime targets.

Let's not think about recurrence! Let's focus on the battle at hand and make sure we win! The goal for most of us here, right now, is NEVER to recur.

deanna14
Posts: 733
Joined: Oct 2008

Linda, I may be able to shed some light on some of this in the future. I have been referred to a genetic counselor for the Lynch Syndrome or HNPCC. I don't have any biologic children, but I have 2 neices and 3 nephews that could be affected by this and then of course any offspring they may have. I think I will pursue it mainly for this purpose.
I had a long discussion today with my gyn/onc and the concern we all have and have discussed are legitimate. The problem is that there just isn't much data on UPSC. Drat... we had to go and get the oddball.
We also talked about possible screening for my neices and nephews. Obviously for the boys it would be frequent (yearly) colonoscopies starting at 29 yo or 10 yrs prior to my uterine dx and my brothers colon dx. We were both 39 when diagnosed. For the girls, it would mean yearly biopsies of the endometrium. My doc said if he were there provider he would recommend them getting their baby making done before the age of 29 and doing the hyst!
Drastic, but cutting edge in eliminating what we are going through.
Knowledge is power!

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am going to talk to my gyn/onc when I go Feb 19 about the genetic link. I have two daughters, and would not like to see them get this. I also have a niece whose father got diagnosed with colon cancer at the age of 56. Unfortunately her mother has breast cancer, so she has cancer on both sides of her family.
What is the HNPCC? I don't remember reading about that. I looked up Lynch Syndrome after reading on one of the earlier posts.
Hope you are doing okay after your second chemo.

deanna14
Posts: 733
Joined: Oct 2008

Same thing... originally it was called Lynch Syndrome, but now they are calling it HNPCC (if I am understanding the doctor correctly). Hereditary Non-polyposis colon cancer (HNPCC). One of the qualifying factors for testing is one first degree relative with early age onset colon or uterine cancer. My mother was dx with uterine ca at age 51 (caught early tx by hyst). My brother was dx with colon cancer at at 39,(like me), and he underwent almost a year of chemotherapy. He didn't lose his hair!lol My mother also had estrogen receptive breast cancer 5 years ago. So seeing the genetic counselor is probably a good idea for me.
I'm doing well post chemo number 2... wired as you can probably tell from my posts. Ramble...
I hope this finds you feeling well. I say where you posted earlier that you haven't lost your hair yet. For me it started on day 13 (last Monday) and today it is just a layer of fine baby hair on the top and some peach fuzz on the bottom.
Hang in there.
Love and Hugs,
Deanna

deanna14
Posts: 733
Joined: Oct 2008

Welcome to the group. Have you too been diagnosed UPSC? What treatments have you received. I hope this finds you feeling well. In regards to the hormones... at this point in time my doctor is telling me that the goal for me is to never take hormone replacement. Natural or synthetic. There are over the counter supplements, but he tells me to steer clear of "phyto estrogens." What stage is your disease? I apologize if you have posted this information already, I didn't see it anywhere
I hope we can help you through this difficult time.

desperate daughter
Posts: 3
Joined: Apr 2009

Hello ladies,
I just joined yesterday after stumbling across the website while trying to do some research for my mother who was diagnosed with papillary serous almost 2yr ago. She was prescribed Megace shortly after starting chemotherapy to help improve appetite and her oncologists also mentioned that it has shown to help with certain ovarian ca's, and due to the ugliness of papillary serous she was hopeful it would have some effect. Unfortunately my mother was very noncompliant with it, because at the time she was still eating pretty well, and she decided that she already had enough other medications to take, so it really was never given a chance to be effective in her case. Due to her progression of disease her Dr. just recently decided to dc it, feeling that it was not having any effect. We admitted that she had not been taking it, but it was still not reordered. I don't know how familar you are with Megace but it is very commonly prescribed to the elderly to improve appetite and for anyone going through radiation and chemo it could be helpful and if it truly is a progestional agent I would say it gets 2 stars or at least worth a try.

cookie1948
Posts: 79
Joined: Feb 2009

Thanks so much Linda for the info, but i just wonder now how long my 85 yr old mom has had this serous carcinoma. she is scared and would love to survive this disease. I just don't know why she didn't have any symptoms sooner besides the little bleeding for 1 wk. It's sorta mysterious, altho today she said her stomach has felt like it's getting bigger for a while now. No pain whatsoever. I guess she has decided to go thru with the hysterectomy and the staging will be done at that time? I believe that's what the dr said. We were sorta stunned. I appreciate your info, and i'm trying to keep a positive attitude but at 85, who knows . You are all so young, i was told not too many women get this in their eighties.
I hope you receive this email, and if u want to call me Linda instead of cookie that's fine. I too never know where my posting will end up.
again, thanks and God Bless. what numbers does the ca125 range in?

cookie1948
Posts: 79
Joined: Feb 2009

i just happened on this website and notice that all of you talking about uterine cancer are young. My mom is 85 and the dr told her that she has uterine serous carcinoma. I went with her to the surgeon today. they want to do a total hysterectomy., and she had the CA125 blood test today and a cat scan is being set up. She is in pretty good health considering so this was a shock. She's had a couple of mini strokes a while back but does not look or act 85 and never suspected cancer until one week of staining and her primary dr sent her to a gynecologist where she had biopsies and a scraping. no sign of cancer at the cervix but in endometrium lining and uterus. Surgeon said she may just have to have the surgery and may not need chemo and besides at this age she doesn't want to go thru chemo. what do u gals suggest?

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

(Is there a better name I can address you as, other than 'Cookie' and 'Willie's Mom' now that we are UPSC Sisters?)

We are always saddened to learn of others that share this horrible disease, but always glad that you have found your way here for support and hope. We will help you all we can to be prepared for the battle ahead and help you be informed for the many treatment decisions that you may have to make. Please stay with us, and when your time allows, read through the long long thread here on this Board where we posted our original UPSC messages before they gave us our own Uterine Cancer Board (very slow loading because of its size, but it does eventually load to your computer). In that thread we have most of the research we did into various chemo drug options and detail the chemo and radiation side effects we experienced, etc. That will give you a better overview of UPSC cancer than any book you'll be able to find, as it is 'real world' and happening NOW.

Please don't let the statistics you find online about UPSC scare you too much, as anything online older than a year or so is outdated. & All of those 5-year survival studies include people treated 5+ years ago, when treatments were very different and the prognosis for UPSC was very grim. You can beat this cancer. We have survivors here that can assure you of that!

Please ask for the surgery pathology reports when you next see your oncologist, or phone ahead so they have them printed out for you. You'll also want to get printed-out reports on your blood work and CA-125s if you have any worries regarding those. (As long as your blood work 'numbers' are good, you may not need to study your numbers, but you'll want them if you start having trouble.) That way we can help you interpret how you're doing, information you'll need to be pro-active in your own treatment.

viejachinita
Posts: 7
Joined: Feb 2009

Hello sisters of UPSC,
I have posted a comment but seemed at the wrong place, anyway, I am writing to you again. My son has posted a message for me and thank you very much for all your support through the messages that I received at my email address.

I was in shocked because last month I was a healthy woman and then this month I am almost dying with a rare cancer. since my doctor told me if I don't fight for it then it will eventually eat up all my organs and die painfully. Well, I am not afraid of death but surely very afraid of pain. So I made up my mind to fight against it. I have read almost all of your cases and found out that most of you are receiving both radiation and chemo but my doctor told me (I have tried with 2 doctors) that what I need is just chemo, but I am at stage IIIC, I am very confused and don't understand why? do anyone of you know the reason? Have any of you try the clinical trial, they are developing a new combination of chemical at applying for the patients with III and IV stages. would it be better to try the new one?

Any idea or information are welcomed since I am a new member and suppose to get the chemo next weekend, so I rather prefer to get more information as possible to discuss with my doctor before starting anything, right?

Thank you very much for all your support and hope to hear from you soon!

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

My apologies to Willie! I have 2 devoted concerned sons myself, so I don't know why I assumed Willie was your daughter.

I originally replied to your post and Cookie's in another response that I THINK will end up ABOVE your post, so please scroll UP just in case. Like you, I am never sure where my post will end up, even after all of the posts I have made here.

Warmest welcome to you and thank you for responding to our welcoming emails by coming here. Willie must know you very well and love you very much, for he knew that you would join us if invited, and very much wanted you to have this resource as a place to share your worries and get other opinions from those most likely to have wrestled with the same questions. And just as we can be a resource to you, you will be a resource to us. Every additional oncologist's opinion is an opinion we all ponder and take to our own oncologists. We are all open to new treatment ideas! So PLEASE get as much detail as you can on this new chemo-only regime as it adds to our collective options.

BIG HUGS & in my prayers!!

viejachinita
Posts: 7
Joined: Feb 2009

Please don't worry about that, I have two very devoted and wonderful sons, Willie helps me a lot when I was so sad and depressed. YOur message makes me feel being concerned by somebody I am so appreciated. Yes, I will discuss further more with my oncologist about this chemo only treatment. But if you can please ask your doctor as well to understand why? By far, they just told me that because of the stage (well, actually my "stage") I just need chemo, I didn't get too detail with her at that moment, because I have no sufficient material on hand. May be I am in a too serious situation, I really don't know but after I did a bit more research at the internet I found out that almost all of the cases they did the treatment with the combination of radiation and chemo.

So if you can ask your doctor with this chemo only treatment, I can have a better concept to discuss with mine. Thank you very much. ah, by the way, I am at the stage IIIC.

Thanks! Happy Valentine's Day!

deanna14
Posts: 733
Joined: Oct 2008

Hi, I am Deanna. I am a 39 yr old with UPSC Stage IIIC. We are all going to fight this and we are all going to win! I too, am curious about the chemo only regime that your doc is recommending. I have only heard of this being treated with chemo and radiation. I have just finished chemo #2 and finished my radiation on December. Chemo is not as bad as I anticipated that it would be. I highly recommend the anti nausea medication, I get the 3 day IV type on the day of chemo. I also have a prescription pill that I start taking the evening of the 2nd day after chemo. I take it until I am sure that I'm not going to have any nausea. I also take a mild pain reliever prescribed by the doctor for a few days following chemo to help with the aches and pains. Do you know yet what chemo drugs you will be taking?
Anyhow, you are strong and you can do this treatment. You have much to live for, I can tell by the worry in your sons words. Be Strong and fight!
God bless you, you are in prayers.

Deanna

deanna14
Posts: 733
Joined: Oct 2008

Happy Valentines Day.....

california_artist
Posts: 850
Joined: Jan 2009

After I say A Wonderful Valentines Day to you all, I was wondering after doing the reading again of all the different approaches our doctors have, where we were from and where we were getting our treatments and whether we are being treated by gyno's or gyno/onc's. How's that for an abbreviation?
I'm from the Upper Penninsula of Michigan. I was referred by my gynocologist to a gyno/onc in Green Bay, Wisconsin so that he could do proper staging, which he did not do as it turns out. How about you girliques?Eh???

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

I had my surgery at Hershey Medical Center (a teaching hospital affiliated with Penn State University) by a gyn-onc; and am getting my chemo currently & will be getting my radiation in the spring at Geisinger Medical Center in Danville, PA.

deanna14
Posts: 733
Joined: Oct 2008

I live in the small town of Fair Grove which lies just north of Springfield Missouri. I am being treated in the Lester E. Cox Health Systems at the Hulston Cancer center. Radiation was done by a radiation oncologist and surgery and chemo were/are being done by a gyn/onc. The cancer was initially found by my gyn who referred me to the gyn/onc.
BTW, I was born in Appleton Wisconsin.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

I live in Fontana,Ca. My surgery was done at Loma Linda University Medical Center,my chemo treatments are being done at Loma Linda University Cancer Center. I'm 20 miles from Loma Linda.My gyno/onc is a teaching doctor at LLUMC.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I hail from Oregon and go to a gyn/onc near the Portland area.

viejachinita
Posts: 7
Joined: Feb 2009

Thank you for writing to me, I will discuss this just chemo treatment with my doctor, but if you can find out anything with your doctor, if would be perfect for me, because one more idea is always better. I want to know all those sides effects causing by the chemo starting since what day? and how many days it dued? can we do our normal work while waiting for the next chemo? The doctor told me that I am going to have carboplatin+taxane, are you taking the same? or anybody is taking the same drug? if so, please let me know the side effect that might occur with these kind of drugs. Thanks!

Please advise,

Belinda

deanna14
Posts: 733
Joined: Oct 2008

I am taking Carboplatin and Taxol, probably the same as you. My cycle is every 21 days. So, the first day of treatment you will have blood test and if your counts are good enough, you will have your chemo. I get really sleepy for about 2-3 days after my treatment. Linda, says she gets hyper from all of the steroids they give you to prevent a reaction to the chemo. So I guess it differs from person to person. Then about the 3rd day I start aching in my joints and bones and that seems to last 2-4 days. Then I feel pretty good until the next treatment. I get tired very easily and that is probably the hardest symptom to deal with. I have not worked since I had my surgery, but I work in a federal prison, so my doc doesn't want me going back to work until I am strong enough to protect myself if I have to. I think if you have a more sedentary job, you might be able to work at least part time. Sometimes I wish I was working as it would force me to be more active and not give in to the fatigue. Until then, I will rest when my body tells me to rest.
I hope this helps, maybe the other ladies will share their experiences also. I think how your body reacts to the chemo differs from person to person. Remember, attitude is everything. I always feel better on the days that I have a more positive attitude. We are winning this game, Belinda... all of us together.
Like Marge always says.... Mind Body and Soul!
Stay strong, hugs around,
Deanna

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I'm going to the Blumenthual Cancer Center associated with Carolinas Medical Center in Charlotte, NC. I have a gyn/onc. It's only ten minutes from my house and my doctor is great. My last visit she told me that she was using the Yale Study treatment with me, the Carbo/Taxol and internal radition for Stage IB. If I have any recurrence my doctor will then send my to Duke University Hospital which is about 4 hours from me. But there will be no recurrence!!!!!!!!!!

My hair is growing back and it's all fuzzy, I'm starting to see some black coming in but it's mostly white so far. Not seeing much happening anyway else where I have lost hair, but that's okay, don't want to shave my legs or arm pits anyway. :)

Belinda, I'm glad that you joined us. Don't be afraid to research and ask you doctor lots of questions. I also brought my husband and mother with me to the oncologist and they had questions I would have never of thought of. Keep the fight!

MIND, BODY AND SOUL!

Hugs

viejachinita
Posts: 7
Joined: Feb 2009

Thank you very much for your experience, I am taking the Megestrol Acetate 40 mgx4/day, is this the steroids that you are talking about, I just start to taking this pills since last thursday and since sometimes I need to breath heavily I don't know whether it is some side effect of the medicine or not? If any of you feel the same way, please let me know.

Thanks again.

Belinda

california_artist
Posts: 850
Joined: Jan 2009

Hope this infor helps. So glad your doctor did the testing for hormone receptor status on your cancer. Most won't.
Love and hope, Claudia
Megestrol acetate (Megace®)
This information is about a hormonal therapy called megestrol acetate, that is commonly known as Megace®. It is used to treat breast cancer. The information should ideally be read with our general information about breast cancer or, if appropriate, secondary breast cancer.

Megace
How Megace works
When is Megace prescribed?
How it is taken
Possible side effects
Is Megace safe for everyone?
Other conditions Megace can be used for
Things to remember about Megace tablets
References
Megace
Megace is a man-made substance called a progestogen which is similar to the female hormone progesterone. It is a type of drug known as hormonal therapy. Megace is mainly used in the treatment of breast cancer.

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How Megace works
The way in which Megace works is not yet fully understood, but it is thought that in some way it interferes with the action of particular female hormones in the body.

Many breast cancers rely on supplies of specific sex hormones, such as oestrogen, to grow. On the surface of the cancer cells are proteins called receptors, which are sensitive to the sex hormones. When the sex hormones come into contact with the receptors, they activate the cancer cells to divide and the tumour grows.

Megace disrupts this process in some way. It may be that it prevents the cancer cells from maintaining the receptors on their surface. Alternatively it may have a more direct way of destroying cancer cells that has not yet been identified.

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When is Megace prescribed?
Your doctor will consider a number of different factors before deciding whether Megace is the most appropriate treatment for you.

For breast cancer, Megace is mainly used as a treatment for women whose cancer has returned after a period of time during which it was successfully controlled with other hormonal therapies such as tamoxifen.

Megace may also be used by women whose cancer has not responded to other hormonal therapies, but whose cancer cells have oestrogen receptors on their surface.

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How it is taken
Megace is taken as a tablet. It can be taken up to three times a day, as directed by your doctor. When a single daily dose is prescribed it should be taken at the same time each day – the actual time does not matter. When it is prescribed in divided doses (more than once per day) the doses should be evenly spaced throughout the day.

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Possible side effects
Each person's reaction to any medication is unique. As people react to drugs in different ways it is not possible to predict who is going to have side effects. Many women who take Megace have no side effects while others will experience them. Very rarely, if side effects are severe, you may have to stop taking the drug and a different hormonal drug may be prescribed.

Usually, there are few side effects of Megace and these are mild:

Increased appetite The most commonly reported side effect is an increase in appetite, causing some people to put on weight. Dieting can help to control this but you should consult your doctor before making any changes to your diet.

Fluid retention Some women have experienced mild ankle swelling caused by fluid retention. This is not harmful but can be uncomfortable.

Feeling sick (nausea) Occasionally people feel sick (nauseated) for the first few weeks of taking Megace, but often the nausea then disappears. Some women find that the nausea continues.

Very rarely, women have reported allergic reactions, jaundice and raised blood pressure.

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Is Megace safe for everyone?
Like most drugs, Megace should not be taken during pregnancy. Even though women may find that their periods stop while taking Megace it is not a contraceptive, so reliable contraception must be used while having treatment with megestrol.

People with diabetes will need to monitor their blood sugar more closely and may need to adjust their anti-diabetic medication while on treatment with Megace. They should contact their doctor if there are any problems with the control of their diabetes.

Women who have had any form of blood clot or inflammation of a vein should discuss this with their doctor before taking Megace, because it may have an effect on the circulation of blood.

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Other conditions Megace can be used for
Megace is also sometimes prescribed for the treatment of endometrial cancer (cancer of the womb) and less frequently for cancer of the prostate gland.

It can also be prescribed to reduce hot flushes both in women during the menopause, and for men experiencing hot flushes as a result of treatment for prostate cancer.

As Megace is an appetite stimulant, it can sometimes be helpful for people who have loss of appetite and weight loss due to advanced cancer.

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Things to remember about Megace tablets
Keep the tablets in a safe place where children cannot reach them, as Megace could harm them
If your doctor decides to stop the treatment, return any remaining tablets to the pharmacist. Do not flush them down the toilet or throw them away
If you are sick just after taking the tablet tell your doctor, as you may need to take another
If you forget to take your tablet, do not take a double dose. Let your doctor or nurse know. Don't worry, the levels of the drug in your blood will not change very much, but try not to miss more than one or two tablets in a row
Remember to get a new prescription a few weeks before you run out of tablets. Make sure that you have plenty for holidays.

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References
This section has been compiled using information from a number of reliable sources including:

Martindale: The Complete Drug Reference (35th edition). Sweetman et al. Pharmaceutical Press, 2007.
British National Formulary (54th edition). British Medical Association and Royal Pharmaceutical Society of Great Britain, September 2007.
For further references, please see the general bibliography.

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Page last modified: 14 January 2009
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california_artist
Posts: 850
Joined: Jan 2009

http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonaltherapies/Megestrolacetate

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I too was diagnosed with Stage 3 C. I am also taking the Taxol/Carboplatin for my chemo treatments. I have only had one treatment. I have two more chemo scheduled each 3 weeks apart. The only side effect I have had is my hair started coming out 12 days after my treatment. It is almost all gone on day 18 after treatment. I did not have nausea, but had meds scheduled to take three days after treatment. I also did not get the achiness that many have talked about. We winter in Florida, so I had my surgery and am getting my first three chemo treatments at the Moffitt Cancer Center in Tampa. I will then return to Illinois and get my 5-6 weeks of radiation, and then have 3 more chemo treatments, each 3 weeks apart. I started out with a very good blood count, so I don't think I will have the problems with anemia that some others have had. I wish you luck with your treatments. They told me the Carboplatin may make a metallic taste in your mouth, but I only had that for a day or two after the treatment.

santefe55
Posts: 7
Joined: Mar 2009

I will tell my wife about the site. She was diagnosed in September and just completed six rounds of chemotherapy (taxol and carboplantin). She is Stage IV due to spread of cancer to lymph nodes. Prior to surgery, her CA-125 was 260. It dropped to 90 after surgery, and is now down to 9. She has a PET scan this week to determine effectiveness of chemotherapy. Good luck to you all.

deanna14
Posts: 733
Joined: Oct 2008

I'm sorry to hear of your wife's diagnosis, but glad you have found our message board. It is difficult to find a lot of info and/or support for UPSC. We have a great group of ladies here providing a lot of insight, comfort and support here. I hope your wife chooses to get on and share her experiences with us.
I am 39 and diagnosed with Stage III due to spread to one lymph node. I finished 25 external beam radiation and 3 internal radiation treatments in December. I received my 3rd chemo (carbo/taxol) today, with 3 more to go.
Anyway... welcome again and please invite your wife to join us. It would be great to have her perspective and hear her experiences. We are all in various stages of treatment and recovery here.
God Bless and take care of you and your wife.
Deanna

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

I am always saddened when I learn of another woman who has UPSC, but happy that you have found us. I am Stage IIIC due to involvement on 1 lymph node and had my surgery October 2008, and have finished 5 rounds of chemo of the 6 that I am to receive (taxol and carboplatin, just like your wife.) I will follow that final round of chemo with 5 weeks of external pelvic radiation 5 days/week, then 3 rounds of internal vaginal cuff brachy radiation, once a week. Will your wife be getting radiation?

Great CA-125! Mine is 17.5, down from 190, and I hope to finish my chemo in the single digits, too!

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

Hi All,

I'm Santefe55's wife. I'm glad he found this website. I have not been able to find much about UPSC except scary statistics. I'm glad to meet you all.

I'm 61, and I have stage IV UPSC. I live in Ft. Myers, FL. My GYN ONC group has reputation of being one of the best - so I'm very fortunate. I had surgery in Sept. I had no prior symptoms before an acute attack on 9/11!!!! Ironic, heh!!. At first, my Dr. thought I had Stage IIIc but PET showed mets in several places in lymph system - neck, chest, abdomin. I just finished 6 rounds of Taxal/Carboplatin and tolerated them well - last one seemed to make me the most fatigued and neuropathy is worse. My PET this week will give me the "verdict".

I've been working nearly FT time since Nov. and have been active in most everything I used to do except heavy duty physical activities. I sing in a choral group and at church. This has been a great therapy for me. I also have been receiving "healing touch" from a certified practitioner. I recommend that everyone read O. Carl Simonton's book, Getting Well Again. I follow the visualization exercises in the book and I have processed the assignments and identified areas that I need to work on to stay mentally well. Please check this book out! I personally know one person that used these techniques and has been cured of liver CA for decades. I also find the following guided imagery CDs helpful- Andrew Weil/Martin Rossman and Bernie Siegel.

I agree that attitude is important. But I find it hard to shake the reality of this disease. Looking forward to your support and encouragement.

Daisy

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am so glad your husband found this site for you. I am sorry you have to join us though as we all go through this journey together. My daughter found this site for me, and I have found it to be very informative and uplifting. Other things I read about UPSC scared me thoroughly. reading from those who have completed treatment, and others ahead of me in their treatment plan has been so helpful.

I am 60 years old and was diagnosed with Stage 3-c with lymph node involvement (5 of 21) and metastatic cells in the abdominal washings. I had a robotic hysterectomy done January 5.
I had my first chemo treatment on January 29, and Second treatment 2/20. I too am on Taxol/Carbo treatments, but I will only have 3 chemo and then my radiation treatments, and then 3 more chemo. We winter in Florida, so I am receiving my first 3 chemo treatments at the Moffitt Cancer Center in Tampa. Then in April we will return to Illinois to finish up the rest of my treatment plan.

My initial CA 125 was done prior to my second chemo. It was 427. I have not had any CT scans done yet. Other than high cholesterol which I have taken medication for many years, I was in very good health prior to my abnormal Pap test. Since January my BP has continued to rise. White Coat Syndrome????? I don't know. But since chemo started my pulse has been very high, too. I have many drug allergies, so finding the right BP medication has been a challenge. I have had reactions both days I have had chemo, but do well the days and weeks after chemo. I guess if you are going to have a reaction to chemo, the infusion center is the place to have it. It makes my husband feel better that the reactions happen there.

I look forward to returning to Illinois, as I am addicted to gardening and look forward to spring to get back in the garden. Keep the positive attitude, but remember we are here when you don't always feel positive. It is a very serious disease, but not hopeless. HUGS to you.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Sorry to hear about you diagnosis but love your attitude. When I found out I had cancer and the reaction I would get I would tell them it's a disease not a death sentence! Music is my stress relief. When I can't sleep I put on an American Indian CD and it puts me right to sleep. When I get up in the morning I plug my ears with my mp3 player and again when I come home from work. I'll go around the house singing and dancing, my daughter thinks I'm nuts but she laughs. Laughter is great!

I'm finished with all my treatments and my every three month appointments start in April. I'm not worried and I'm starting to feel very energic; haven't felt this much energy in a long time. I do have projects that I am working on, like making a DVD for my children with a poem I wrote, pictures and music and I've started a "bucket list". #1 on the list is to see the Philadelphia Eagles play in Lincoln Financial Park (grew up watching them in Veteran Stadium), my brother in NJ is working on getting tickets. It has been a wake-up call but I believe it's just one of lifes bump in the road and I have a lot to stay alive for.

These are great ladies on the website! Take care.

MIND, BODY AND SOUL.

Hugs!!!!

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

Marge,

Good for you - that you are in the surveillance stage. Sounds like your attitude is very upbeat - that's the way we need to be. I'm glad your energy is returning - hopefully I'll be right behind you in gaining energy and returning to life without constant medical treatments. Though my personal healing sessions (meditations, etc.) need to continue.

take care. Continue to sing and laugh.

Daisy

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

Hi Ro,

Thanks for your warm welcome. I wish you the best in getting your BP under control. I believe in "white coat syndrome" - Drs hold so much power there's bound to be anxiety involved.

Enjoy the FL sunshine.

Daisy

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

Hi fellow UPSC friends,

First a comment to Belinda - After surgery in Sept I was staged at 3a with plan for chemo and radiation, but a PET scan before treatment showed distant metastasis in lymph nodes and the plan switched to chemo only first. My guess is they want to pursue a systemic approach first and then zero in on problem areas. (I really need to ask direct questions, though).

I finished 6th round on Feb 19 and am waiting for next PET scan - it was scheduled for last week but insurance denied. I hope something happens this week. Hang in there, Belinda. I fared pretty well during chemo you will too.

To the rest of you, I want to thank you all for the warm welcome. I feel like I know you now that I’ve read so many of your posts. I am glad you had each other at this time. I wish I found you guys sooner. If you don't mind I'm going to ramble on a bit. I was diagnosed in mid Sept – not too far away from some of you. I live in southwest Florida. I can relate to your journey. I have done this alone – my fault – I didn’t reach out to local CA groups b/c I didn’t want to dwell on being sick – maybe I was in denial or I minimized the value of support. My treatments initially went very well so I didn’t need to be a “patient” or reach out. Only when things started going bad (my doc leaving the area, blood work bad, chemo delayed, tears flowing, being scared) did I feel the need to connect. It seems lonely when no one REALLY understands; I was embarrassed that I cried so much in the past few weeks, though others gave me permission and didn’t seem to mind.

I’ve been getting to know you – Deanna’s wedding, stories of family, the joy of your grandchildren, the trials of treatment - changes in your bodies and moods – dealing with crises with your health and family. It’s evident that you are all caring and thoughtful women – there for each other through thick and thin.

I don’t really know what my prognosis is – trying to be positive and not dwell on negative thoughts. I think I am stage 4 because of metastasis as far as lymph nodes in the neck – No other organs showed any CA in fist PET scan.

I feel really uneducated when I read your conversations. I could not find much info about UPSC and have trusted my gyn/onc re: treatment. My doctor is moving out of FL soon which has been a real bummer for me. I’ll be transferred to another doc in the practice who I’m sure is excellent but (why are they all men!!!) we’ll be new to each other. Thank God for my onc. nurse – who put up with my phone calls, fears, and tears during the bad times. I sort of felt guilty for calling her so often until I read that many of you do the same.

I gained weight like some of you. I’d like to drop at least 10-15 pounds. I’m still very weak and have no stamina but I need to push myself to exercise. I am irritated by increased neuropathy in middle toes and hands/finger tips. My skin feels waxy.
I’m interested to know more about the supplements and any diet suggestions you have. About mid March (a month after last chemo) I was planning to get into a high antioxidant diet. I need to stop the sugary food which is not good for me in any case.

I’d be interested in your feedback about any of this.

Love and prayers to all of you. Mary Ann (aka Daisy)

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

None of us know what our prognosis is. We are all hoping and praying that whatever our treatment plan is, it is going to work for us. You are right that it is a very serious disease, but they make progress every day with the treatment of cancer. So we all need to have hope. Sorry to hear you need to get a new doctor. I too will be getting new doctors when I go back to Illinois. It is scary to be switching doctors, when I have confidence in the one here in Florida. I am glad you trust your onocology nurse. They are great resources and can calm many of your fears. They are used to getting many phone calls. I too wanted to lose some weight this winter, but did not feel this was the time to lose weight. I keep reading about how you can lose weight during radiation treatments, so I felt it was best not to try to lose weight. I read that you want to be careful with different supplements, herbals and vitamins because what boosts the normal cells can also boost the cancer. We sure don't want to help the cancer grow. You are lucky if you have someone you can share your tears and fears with, as it it good to express both of these rather than keeping them inside.
Hope you are feeling a little better.
Love and prayers to you, too.

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

Thanks for your encouragement Ro. You are right, none of us really knows what each day will bring. We need to stay in the "now" and not get too far ahead or behind that. My husband encouraged me to be proactive so if I don't hear anything about the PET scan by Wed, I will call and find out what's up!!

Have a wonderful day everyone, Mary Ann (Daisy)

deanna14
Posts: 733
Joined: Oct 2008

First of all... sorry to have to meet you this way, but I am glad you have found us and do wish you would have found us sooner.
I have wonderful family and friend support, but this group has added so much to my recovery. There is so much comfort in being able to get on here and collaborate feelings, ideas, etc. with people who REALLY know what all of this feels like.
It was weird when I read your above post and you talked about my wedding and things going on with the others. It made me proud... I have never met any of these ladies face to face, but they are a huge important part of my life! They have helped me sooooo much through the scariest part of my life. I so appreciate them and again, feel very proud to have people read our conversations and get something out of it. Thanks for sharing.
I have already learned a lot from you also. Like the neuropathy in the middle toes, hands and fingertips. I have been experiencing this also, along with the bottom of the ball of both feet. It just helps me to worry less knowing that you are feeling the same symptom. I know none of this is normal... but it makes me feeling like I'm normal (does that make sense?)
Maybe after our treatment is over, we can support each other on here in getting those 10-15+ pounds off.
Anyway, I agree... these ladies are very special!

acallen98
Posts: 4
Joined: Mar 2009

Wow. My name is Amy. I have spent hours reading your discussions, crying and trying to take in as much information as I can. My mother, who is 59, had some spotting a couple weeks ago. After a pelvic biopsy, she got the dreaded call that she had Uterine Papillary Serous Cancer. Within one week, last Monday, she had a full hysterectomy. They said she doesn't fit the "mold". She is younger, white, thin, good health.... The good news was that there was no cancer in her lymph nodes or organs. However, she was diagnosed as a stage 3A, due to cancer found in her free floating cells. I had researched online prior the Yale study and asked the doctor if they were going to do this Platinum based chemo. I was happy to hear that they had also done the same study within a few months of Yale and came to the same conclusions, but he said she would need chemo only. I am a bit concerned at this and will have to inquire more. Sounds like she will be on a silimar routine as some mentioned where she will take the carboplatinum and paxil combo(I forget exactly what they are called) one day every three weeks for six treatments.

I have many questions. I don't yet quite understand the staging and what A means versus C, for example. I am concerned about not doing the radiation. And more importantly, I am concerned about my mom! We live in Greenville, SC. Not too far from our Charlotte friend. God bless you for having this discussion board. I have told her about it and I hope when this can all settle in a little more, she too can read all you have to share and include her own experiences. She goes to the doctor next week to set up her chemo appts after her body has healed from surgery.

I am not quite sure if I am supposed to just respond from the last thread....hope it gets to you all. I will add all of you lovely ladies to my prayers up with my mom.
Amy

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

Hi Amy,

I am like your mother - don't fit the mold!! I wonder if there is a mold - according to my Dr. it's "bad luck" to get this CA.

I will have appointment soon after my CT scan this week and I will find out about my treatments. I was initially stage 3a with plan for "chemo and radiation" but this changed to 6 rounds of Taxal/Carbo.

I don't want to burst any bubbles but my understanding is that this cancer is incurable and that we should expect recurrences. I've been told that we can live a long life and that we will have to "manage" this disease. Remission sounds very good to me!!

I'll check my my new Dr. about the radiation thing. I think it may be a good thing to keep this as a "future option" rather than to use up this card too early.

Mary Ann (aka Daisy)

deanna14
Posts: 733
Joined: Oct 2008

I am not sure that there is a mold for UPSC. It seems that none of us fit what the literature says is the mold.
I also have never gotten the impression from my doctor that this cancer is "incurable." It is highly recurrent and agressive. However, my understanding is that with the recommended carbo/taxol treatments every 21 days x 6 cycles, 25 external radiation treatments over 5 weeks and 3 internal high dose radiation treatments that the cure rate is 60% or higher. I think that when they give you the impression that you should expect reoccurance, it is so you will prepare for the worst and hope for the best.
I also was of the understanding that they hit UPSC with everything they have when you are first diagnosed because if you have a reoccurance, that is when the survival rate takes a real nose dive.
My radiation oncologist told me that the most common site of reoccurance is the top of the vagina. He explained that this is why the high dose internal radiation treatments are so important.
Anywho, regardless of the percentages, or the data or the lack of data, I'm praying for a cure from this cancer.

Kris Ann
Posts: 26
Joined: Jan 2009

Hi Amy,

My mom was also diagnosed with stage 4 upsc cancer actually 1 year ago March 10th. She was 61 at time of diagnosis. She is young, youthful, thin, active, both of her parents are almost 90 and very healthy. The whole thing was a shocker and still is really. She ended up doing 4 rounds of chemo (platinum). Then she has 35 whole abdominal radiation treatments... then had 4 brachy therapy treatments. Oct. 3rd of 08 was her very last brachy treatment. She has since recovered quite nicely. She lost a lot of weight though and is having trouble gaining any weight back. Her stomach is loud. Meaning it makes loud grumbling noises after she eats. But she eats everything so that is good. Her color looks great.. her hair came back with a lot of body to it and she has her energy back... so I guess there is some light at the end of the tunnel. Of course she still has to be monitored very closely. But I'm praying all that treatment did its job. So my prayers are with you... and of course your mom. Keep your chin up!

Kris

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I too did not "fit the mold". My cancer was found on a routine pap test. Which they say is very rare. I wonder if I had had the pap done a week sooner or later, would it have been found. I am 60 years old. I have been healthy, exercised, and followed a low fat diet. I thought I was healthy. All the doctors felt the cancer was caught early, and all I would need was a hysterectomy. Unfortunately I was diagnosed with Stage 3-C cancer. You asked the difference between 3-A and 3-C. 3-C is when the cancer has gone to the lymph nodes. 5 of my 21 lymph nodes were positive. I too had positive cells in my abdominal washing. I am having what they call sandwich treatment of 3 chemo treatments, then radiation treatments will start April 7th and then three more chemo treatments, each chemo will be three weeks apart. I hope your Mom can read some of the discussion board and participate in the discussion board. I have found it very helpful and comforting to read about others experiences. You are right that what you read on the internet is very scary. On this board you hear about what is going on with those who have completed treatment or are in various stages of treatment. It is so nice to hear about how life goes on after treatments. HUGS to both of you.

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

I was diagnosed as Stage III-c UPSC following my surgery in early October 2008. My surgeon referred me first to a radiation oncologist, assuming I would get radiation before chemotherapy. But the Radiation Oncologist said I would be better off getting my chemo in first, because radiation can compromise your bone marrow to the point where it may be hard to get all of your chemo in before toxifying. So, to date, I have had 5 of my 6 rounds of paciltaxol/carboplatin, with my final round hopefully on Monday. But the surprise last week was that the chemo oncologist said he spoke with the radiation oncologist, and they may not recommend external pelvic radiation for me. (instead, just the 3 internal brachy radiation treatments). I was SHOCKED, as I just assumed I would also be getting the 25 external radiation rounds over 5 weeks. I don't meet with the radiation oncologist for 2 more weeks, and got this pronouncement second-hand from my chemo-onc, so I'm not too concerned yet. But I will be sure and post the pros and cons of having external radiation that we discuss so that you can be ready to fight for the radiation if you think it's needed. I am trying to be open-minded, although my gut reaction is that I will fight to get ALL of the treatment I consider 'best practices' for this aggressive cancer, as much as I LOVE the idea that I may not need it. I have a CT-scan before my meeting with the radiation oncologist and I am sure that will play into any decision. My chemo oncologist already refers to me as 'in remission' because my CT-scans are clear and my CA-125 had dropped down to within normal range now for my last 3 chemo rounds. But I want to do whatever is necessary to prevent a recurrance and it scares me that they may be 'saving' radiation for when the cancer returns, as an area of the body usually cannot be irradiated twice. I need to find out their reasoning and I will share it with all of you when I do. I welcome the input of all of you who have had radiation already.

acallen98
Posts: 4
Joined: Mar 2009

Thank ladies for your comments. It is just nice to feel like there is some hope. You look on the internet and statistics can scare you. But they say that the internet is not always reliable and current. There seems to be new treatments out there for cancer all the time. Besides all this research, I have been reading Lance Armstrong's book as well. There are so many people who start off with such a dreadful diagnosis and beat the odds! Makes you just want to fight so hard and beat it!! He advises not to ask the doctor what your chances are because he says, "There is no proper way to estimate somebody's chances, and we shouldn't try, because we can never be entirely right, and it deprives people of hope. Hope that is the only antidote to fear."

My mom and I went wig shopping today. We were thrilled that they actually looked real and she looked great with them on. She should get hers next week, so she will be ready before her chemo starts.

I have been going through your discussions from the past year and writing things down...baby oil for her bald head, tips for constipation etc. You have encouraged her already and she had not quite yet been on your site. We never seem to understand why God allows us to go through such tough times. I still don't understand it, but I see you as angels sent to help my mom when we feel so scared. I pray he heals you all...So again, thanks and thanks. I will check here often...

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