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clear cell survivors

sunbow
Posts: 1
Joined: Dec 2004

Are any of you clear cell survivors? I am almost 2 years post chemo for clear cell and would like to talk to other survivors.

diana0903
Posts: 4
Joined: Mar 2004

Hi Sunbow,
Yes I am a clear cell ovarian cancer survivor stage 1C. One year chemo anniversary will be 1/9/05. Feel free to email me to chat at dedosmann@hotmail.com.
Happy Surviving!!!
Diana

juneaugirl
Posts: 12
Joined: Aug 2004

Hey, there's more of us out there! I, too, am a clear cell survivor. 1C and finished chemo 1 year and 2 days ago. I'm in remission and am getting my port out the end of the month. (WOO HOO!! Happy 'bout that!) Feel free to email me at this site. My home email gets too full and my husband sometimes gets a little delete-happy.

kschzcake
Posts: 13
Joined: Oct 2004

My mom was diagnosed with clear cell IIB, grade 2, a few months ago. She just finished her 6th chemo and has 2 more to go. I'm glad to see that you're both doing well. My mom also seems to being doing well. Her CA-125 has gone from over 3,000 prior to surgery to 7. She loves her gyn/onc and he seems to be very optimistic. He hasn't made any issue out of the fact her cancer is clear cell. Her regular gyn said that there was no scientific evidence suggesting that clear cell had any different prognosis from the other kinds. What have you been told?

sakura121
Posts: 2
Joined: Apr 2011

I was diagnosed with clear cell IIIA 2 month ago, onc suggest do IP chemo and combined with IV chemo, anybody did IP chemo?
Onc said I need do another surgery to implant catheter for IP chemo.

ivyrose
Posts: 9
Joined: Jun 2011

I have just had surgery and had a large clear cell tumor removed 2 weeks ago. Starting chemo tomarrow. Anybody else using temsirolimus + carboplatin + paclitaxel treatment. Statge IIIc clear cell. Please contact me with how you are doing.

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

Hi, I am clear cell 1c. I finished standard carbo/taxol 3 months ago. So far so good. My hair is just starting to grow back. I'm not familiar with temsirolimus chemo. Where are you being treated? Is is a clinical study adding that chemo? They just started a clinical trial adding something to the carbo taxol where I was treated but I was too far into my treatment to have it added.

ivyrose
Posts: 9
Joined: Jun 2011

The temsirolimus is part of a stage II trial in Northern Indiana. It is considered part of a targeted treatment with less side affects..(I hope).

tjpt16's picture
tjpt16
Posts: 27
Joined: May 2011

I was diagnosed with stage 4 clear cell in Nov. 2009. I'm doing well. My goal is to live until 2050 at least. Nobody has ever told me my stage and I never asked. I just saw it inadvertently on a medical report. I felt that I was going to survive and so knowing the stage was irrelevant. Maybe I was just fooling myself. I feel that sometimes when people hear what stage a cancer patient is in they put that person in a box and determine their survivability status based on that. Everyone is different.

I first received treatment at MD Anderson in Houston for nine months....carbo/taxol, then debulking surgery (took all my girlie parts), then radiation in summmer 2010. I still had a tiny bit on a para-aortic lymph node. I returned to work in Japan in August 2011 and have continued treatment there; immuntherapy 3X a week, first chemo in Japan was CPT11 and nedaplatin for three rounds - weekly for three weeks and one week off each round, then every two weeks beginning in January I had a 24 hour infusion of CPT11 and took an etoposide pill everyday. Now I'm taking TS1, a pill that's a derivative of 5FU. He plans to continue with CPT11 after a bit. My tumors have slowly grown since I returned to Japan. I'm wondering why my doctor wants to stick with CPT11. Clear cell is more prevalent in Japan and lots of research on it is being done here. My doctor at MD Anderson felt very confident that I would have access to excellent treatment in Japan.

This weekend I'm heading to the Cancer Treatment Center of America in Tulsa and will have my first appt. on Monday. I'm very interested in trying new chemotherapy and so was very glad to hear about Torisel. There's another one given to kidney clear cell patients that is being tried for ovarian cancer. It's called Sunitinib. I know that CTCA has had mixed reviews in discussions here, but I am interested in their holistic approach to treatment.

Has anyone been drinking Rene's Tea aka Essiac Tea? How is it? Any effects good or bad?

Take care, everyone.
Teresa

sakura121
Posts: 2
Joined: Apr 2011

I will start 4th chemo next Thursday, so far so good.

you are survivor for 1 1/2 years, how do you manage your diet?

pjdreams's picture
pjdreams
Posts: 79
Joined: May 2010

I am clear cell 1C diagnosed first in Aug 2009. Had recurrence last fall, with 2nd look surgery followed by major debulking surgery in March 2011. they were unable to remove all the tumors, some are still embedded in bowels and colon. Poor prognosis. I'm now on doxil every month.

Even though I was stage1C, the gyn/onc says it's the clear cell part that is very aggressive and deadly.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Torisel (temsirolimus) is used for kidney clear cell cancer & I think it is showing promise for ovarian clear cell cancer. This chemo can cause high blood sugar & high cholesterol. I am not sure if the side effects are reversible.

Carolen

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Did you get the it is only stage 1 but you are going to die anyway feel, too? Is that not so frustrating and confusing?

I got diagnosed at stage 1A, but man were the doctors grim and prognosis not good. I am used to people having that type of reaction with like stage 4 or 5...but 1?? I keep hearing but your cancer is different.

mom2greatkids's picture
mom2greatkids
Posts: 512
Joined: Jun 2011

I am stage 3c, but boy was my surgeon grim. I do have the same feeling "that I am going to die." I guess Clear Cell is the most aggressive. However, there are survivors of Clear Cell no matter what the staging. I guess we need to focus on those. I start my chemo most likely next week. I had surgery May 18. Best wishes to you.

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

Are you all just clear cell ? My pathology report said clear cell and serous is that better or worse than just clear cell? I have not read about anyone with both and would like to hear there are others out there.( but if it is worse I would not really want to have company)
Colleen

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

Colleen, mine is mixed: clear cell, serous, and epithelial. I have read that mixed has a somewhat better prognosis, but I couldn't nail my doctor down, though I really didn't try too hard. He is very upbeat, and I need that.

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

I asked my Dr too whether mixed was better or worse and she was pretty vauge also. Either they don't know or they don't want to give us bad news that may or may not apply in our case.
Colleen

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I think the data is really still too sparse for them to feel comfortable speaking in decisive tones. What I read was couched in iffy terminology and I chose to put it in the best light because I need to.

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