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Looking for stage 3c+ 5 year+ Survivors

tianawright
Posts: 2
Joined: Mar 2004

My mother was diagnosed stage 3c ovarian cancer in June 2001 and has had one recurrence each year since. We are getting desperate and are willing to try anything. We hope to hear from long time survivors perhaps with experience with recurrences and refractory cancer. Please send me your ideas and any information. FYI she has had two major sugeries and treatment first with Carbotaxol, then radiation, and most recently Topotecan. The Topotecan is slipping and we need some good ideas fast. Anything at all will be greatly appreciated. Traditional or Alternative methods welcome.
Regards,
Tiana

leonorafriend's picture
leonorafriend
Posts: 7
Joined: Apr 2003

Hello! Tiana, my name is Leonora, I'm 51 years old. On May 1st I'll be celebrating my 6 year anniversary surviving Ovarian Cancer!!! At age 40 my periods stopped, and went on HRT for 5 years. (I was having terrible hot flashes, very moody, couldn't sleep) My cancer was NOT related to my HRT. My GYN doctor and I talked about it, my Mother's sister had ovarian cancer at age 56, had treatment, but died with in that year. After six chemo treatments my CA125 levels showed no signs of cancer. Email me at ACS CSN "LEO7" if I can help you with your Mom. I believe in God. Saying my prayers helped me get through each day, and still does! I like to find prayers or poems to help me cope, this is one I found on a box of tea.

Look to this Day!
Yesterday is but a Dream
And Tomorrow is only a Vision;
But Today well-lived makes
Every Yesterday a Dream of Happiness,
And every Tomorrow a Vision of Hope.

May the Lord be with you and your family, LOVE and Hugs, Leonora

clightfoot
Posts: 7
Joined: Feb 2003

I'd like to talk with you. I am just getting ready to pass the three year mark.

AlyssasMom
Posts: 2
Joined: May 2008

My name is Darthi. I hope this e-mail finds you well. I was diangosed in April of 2008 with stage III/IV Ovarian cancer. The doctor removed my spleen, part of my diaphragm, 6 inches of colon, and I had a total hysterectomy. He told me that he even took my liver out to look behind it to be sure he got everything. He believes he did. I have completed 6 rounds of chemo (taxol and carboplatin) with good results. My CA125 went from over 2700 before surgery to 5 now. I have a toddler (I am 45 years old) and have opted, after discussions with my surgeon, that I would do the 12 mini weekly chemo treatments of a lesser dose of taxol to help me stay in remission. The doctor said perhaps it will kill a persnickity cancer cell that could be hiding somewhere. :-) I have completed 3 sessions out of the 12. I hope to hear from you, and anyone else who would like to talk to me.

darthi

green50
Posts: 318
Joined: Feb 2008

Hi Darthi
I am Sandy and am taking slow drip desensitizing carbo as I type this. I wish you well with your treatments and pray these will be your last. I have been taking chemo off and on for 6 and half years. Count going down. My CA125 was 14000 and now 4500 and still going down. Hopefully have it down by next spring below 100 and will be able to stop at least for awhile if not for good. You never know about what will happen. Hope your holidays will be great ones especially with your little girl.
God Bless
Sandy Green

ellen62
Posts: 10
Joined: Apr 2003

Hello Tiana! I'm 41 years old and was diagnosed with ovarian cancer stage 3C in June of 2002. I have been on various chemos ever since with no remission. After Topotecan, I had good luck with Gemzar/cisplatin--kept my CA125 at around 70. I am now on Taxotere. I have been to several doctors, and they all say that there are new treatments all the time and it's possible to keep the cancer at bay. So far that is exactly what it is doing for me. I feel great (other than side effects from chemo) and have a pretty good life. I also do yoga and have been getting acupuncture treatments. I've been finding that the acupuncture really helps with the nausea and fatigue from the chemo. A doctor at Sloan-Kettering told me that the pattern of ovarian cancer is that it can be held at bay by chemo until it becomes resistant, then the protocal is to switch treatments as soon as the CA125 starts to rise. This is exactly what my oncologist has been doing. It is possible to have a good life and survive for many years this way! Please keep up hope, and look into a form of mild exercise (check with her doctor first!) and acupuncture. Best of luck to you, and feel free to contact me if you want more information.
Ellen

Fran6
Posts: 2
Joined: Apr 2004

Tiana--I was diagnosed at age 52 with stage 3C ovarian cancer in April, 1998. It seems so long ago! I had surgery, carbotaxol...10 months remission. Carbotaxol again...10 months remission again. another surgery and then topotecan which gave me a year and a half remission. That puts me at fall, 2002 when I went out of remission. I have been in treatment ever since...topotecan, which worked for a few months, then doxil, which worked for a few months, now I am on gemzar and am close to remission again. Is your mother seeing a gyn/oncologist? That is really important. The fact that you said you "need some good ideas fast" makes me wonder why your mom's doctor has not already given her some ideas about what to think about as the next step. Other than some side effects from chemo, I have always worked and felt good. I think keeping some kind of a routine is important and helps one to feel "normal." Go back to the doctor and ask for options, if your mom is not seeing a gyn/oncologist, find one. He/she will provide you with many alternatives. God bless.

suzetter
Posts: 1
Joined: May 2004

My mother was diagnosed with stage 3C Ovarian cancer in January 2004. It had already spread upward to her stomach. We immediately flew her to Houston, where she had three chemo treatments using carboplatin and taxol. Her tumour markers after her 2nd treatment was 17. She had surgery on April 21st and was released May 1st. The surgery went very well and they only found residue in two areas, which they cut out totally (along with everything else she didn't need). Anyway, she has 3 more chemo treatments scheduled and then her return home. I know stage 3 cancer victims are likely to have re-occurences for the rest of their shortened life. But, I prayer and hope everyday that God is performing a miracle with my mother. It's hard to judge the prognosis, becasue the doctors always try to be positive. Could anyone tell me if the results I described about my mother is typical or better than usual? And I appreciate the information about the Topotecan, Gemzar/cisplatin, doxil etc. Are these new drugs that are better than the carboplatin and taxol? Is there some proven order to take these various drugs in when your system becomes immune to them? Anyway, thank you for letting me share my experience and learning from yours.

als26
Posts: 48
Joined: Feb 2002

Hello-
You should definitely talk to your doctor about the other drugs mentioned above. I believe that most people start out with Carbo/Taxol. Should the cancer return, the doctor will order Doxil, Gemzar, Topotecan, Etoposide, etc.. I believe the Doctor will choose which one based upon the stage/grade of the cancer. The MD Anderson or Johns Hopkins sites (www.mdanderson.com or www.johnshopkins.com) should be able to give you more information.
Take Care.

juliejrn
Posts: 2
Joined: Oct 2003

Hello! I am a Stage III-c survivor who just passed her 4th year mark with NO reoccurance. I am so excited to be here. What do you want to know? My email address is juliejohnson57@aol.com if I can help. I had topotecan/taxol and then carbo/taxol. My grandmother died of ovarian cancer and I was an OB/GYN RN for over 10 years before this. I am 47 and have a son who just got married and a daughter who is about to graduate high school. I plan on being a wonderful grandmother.

Carfoxy
Posts: 4
Joined: Feb 2003

Hi, I am going to celebrate my 7th anniversary this year. It's been some kind of experience.In Feb I had a 2nd surgery and they found some cancer "within" my abdominable wall. It appears it cannot be removed. Waiting for word to start taking Gleevac. But you know what? I am going to beat this thing. Just put your mind to it and think positive. God Bless!

BJ_Derton
Posts: 1
Joined: Dec 2008

Hi, I was diagnosed on Christmas Day, 1999, underwent 22 months of 4 different types of chemo starting with Taxol/Carboplatin, Doxil, Gemzar/Carbo but because I had high grade, agressive Stage 3C, it took out my right kidney before I was actually diagnosed. However, after all the chemo, two major operations, a catheter [what a god-send to me], a 15 inch blood clot through the center of my chest.. and several transfusions.. oh, and 7 weeks of radiation, I was pronounced NED on 9/12/01. Happy Day/Sad Day. Have just taken one day at a time, find a doctor onc/gyn definitely, talk to them, make lists with questions, research all you can. Everyone is different. I am the only one with my type they can find so I felt totally alone. They kept saying "5 years", I kept saying, "But I feel fine" and so it went. But in the end, I am still standing, run a company, mow the yard, and the only problem still lingering is the neuropathy in my hands and my feet. Listen to your body, trust in your faith, and admit it's okay to ask for or take help from people. You are in my prayers as I know it's not easy, it's just not a done deal. Medicine has come so far, and Oh, I also used IP6 with insoital[sp] and that really seemed to boast my immunity. You can email me privately about that.. but it was my choice and even my doctor was surprised. Don't know if it helped or just kept me on the straight and narrow knowing I can beat this. God Bless and hang in there, you're not alone. BJ Derton

newhopechurchli's picture
newhopechurchli
Posts: 127
Joined: Oct 2008

I was wondering what IP6 with isolital(sp) was... I have never seen that before.

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

I googled it and there are lots of listings, the most recent from M.D. Anderson in Houston a leading Cancer Treatment Center. Stands or inositol hexophosphate or phytic acid. I didn't read further. Usually you can find most everything with a search engine like Google. Most of these post are pretty old. Saundra

newhopechurchli's picture
newhopechurchli
Posts: 127
Joined: Oct 2008

True... I could have checked the internet. I think I will do just that! :)
thanks Saundra.

Bstrange's picture
Bstrange
Posts: 87
Joined: Feb 2009

I had surgery in Aug 2007. I too have had to have chemo again. I was clear for 8 months and then wham-o my numbers jumped up. In October (CA 100) they put me on Topotecan, but by December it was not helping and my numbers started up again. I was changed to Taxotere/Carbo and it is working. After 1 treatment my numbers fell from 59-37. There are several types of chemo they can try. I was told I had to be off Taxotere/Carbo for 1 year before I could start it again.

I will keep your mother and you in my prayers.
Barbara (Bstrange-newbee)

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