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

viejachinita said:

Hello
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

Belinda
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

lindaprocopio said:

Hi, Claudia! I did a little research on Tamoxifen
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.

I am Linda aka cookie
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?

viejachinita said:

Deanna and Marge
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

Megestro Acetate is a type of hormone therapy
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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Content last reviewed: 01 April 2008
Page last modified: 14 January 2009
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viejachinita said:

Hello
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

Welcome Belinda
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.

deanna14 said:

I'm from Southwest Missouri
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.

I'm from Southern California
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.

santefe55 said:

UPSC
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.

Welcome Santefe55!
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 said:

I echo Deanna's WELCOME to Santefe55!
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!

New UPSC member
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 said:

Welcome Daisy
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.

Welcome Daisy
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!!!!

Ro10 said:

Welcome Daisy
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.

Hi Ro,
Thanks for your warm
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 said:

chemo only and more...
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)

Daisy, feel free to express what ever you need to
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.