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Posts: 3
Joined: Dec 2009

in mid april 2009 I started spotting blood. after an abnormal pap and a dnc i was diagnosed with serous pappillary uterine cancer. i received three chemo treatments trying to reduce the size ofthe tumors and the swelling around the liver and spleen. i then had a complete abdominal hysterectomy and debulking. the cancer had spread to one tube and ovary nothing in lymph nodes. i also had a mass in the upper right quadrant of the abdomin. i then receved three more chemo treatments(taxol and something else). after chemo my doctor says pap and CA125 every three months. after six months the CA125 went from 19 to 69. now my doctor says CA125 every month when it climbs to 100 i have the choice of more chemo. if i choose more chemo i will be on chemo the rest of my life. i had minimal side effects from the chemo but was told that side effects get worse with each treatment. i don't know if it will be worth the side effects to gain a few months. i dont know how long to expect without chemo. i have read how many of you received radiation, my doctor says i cant have radiation it will destroy my liver and kidneys. i would appreciate any info from those whose mothers or other loved ones have gone through this.

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

Last November I had my CA125 shoot up to 155 after my initial remission, and they did a CT scan then PET scan that both suggested that my cancer was back. I immediately went back into chemo, but it was a MUCH MUCH easier chemo to take than the carbo/taxol I'd taken right after my hysterectomy. I would imagine that your oncologist would have a similar strategy if chemo is now going to be a part of your life most of the time (like me), taking into account your quality of life. I took WEEKLY taxol chemo, in a much weaker dosage because I got it every week. The lower 'fractionated' dosage allowed me to feel really good, with no nausea or pain or nueropathy or anything but baldness and some fatigue. Getting chemo every Monday was more an INCONVENIENCE than anything else. I was still able to work full time and go out to eat and to movies and work in my garden, etc. Life on chemo can still be a good life. I strongly encourage you to give it a try; you can always quit the chemo if that is your choice. But at least give it a try. Think of it like managing your disease with the chemo, like someone with diabetes who has to take insulin every day.

After 10 weeks, I had a new CT/PET scan and my cancer was gone again! I got a 4 1/2 month chemo break with that 2nd remission and used the break to go on a cruise to the Caribbean. But my cancer came back again and I did 7 more weekly rounds of taxol before taxol stopped working for me. Now I am on Doxil chemo. I continue to have a high quality of life and feel good, even though I have been on chemo now almost constantly for the last year. I am so glad I decided to fight on. Today I went to my granddaughter's soccer game, then pruned 3 of the trees in my yard, then took the grandkids to Friendly's for dinner, and then to see a 3-D movie at the mall. Life is GOOD! Even on chemo, life is GOOD.

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maggie_wilson's picture
Posts: 616
Joined: Nov 2009

i'd wonder about a second opinion at this point. if you've had one, i'd get a third, from a doctor outside your doctor's office. i'd certainly want to know what other options i had available, even alternative ones. i'd recommend the book anti_cancer, a way of life, to give you another perspective. do not give up on yourself. no one knows what is possible and how long you have, especially since your lymph nodes were clear. you might talk to your doctor about cyber knife which is intense radiation that pinpoints the tumor and does not destroy vital organs around it like liver, and kidney. there are more possibilities out there, so i wouldn't just take what this doctor says as gospel. and i'd listen to women on this board who have had recurrences, and how they manage to live a good life.

just don't give in or give up.


Posts: 683
Joined: Apr 2010

When I read your post I couldn't give you an answer and I was hoping that Linda and the other ladies read it. Please do not give up get another opinion and fight to the end. Just as Maggie says no body knows how and when. Linda is a shining example she had many chemos and is still enjoying life. So my dear I hope you got some encouragement from these lovely ladies. June

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