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clear cell survivors

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.

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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!!!

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.

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?

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.

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
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.

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
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.

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
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
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.


Radioactive34's picture
Posts: 388
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
Posts: 528
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.

Becca42's picture
Posts: 1
Joined: Oct 2017

How are you doing? I am the same stage...

Cafewoman53's picture
Posts: 737
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)

anicca's picture
Posts: 335
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
Posts: 737
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.

anicca's picture
Posts: 335
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.

Posts: 1
Joined: Aug 2015


My wife will undergo surgery this thurs. For clear cell. I know this site is for patients. I just needed someone to talk to,im really scared as I know my wife is too. We have been married 37 yrs. An I feel like both ours lives have ended. Sorry for venting to perfect strangers. It all seems very sudden. Thanks for listening


NoTimeForCancer's picture
Posts: 1915
Joined: Mar 2013

kngcobra - spouses, friend, family are all welcome here.  No doubt she will be in many people's prayers now that we know there is another warrior among us. 

I can't imagine HOW my family felt when I told them I had cancer.  No doubt they were as scared of what would happen and didn't want to see me go through everything I would.

The ladies here are a generous with this group.  If you or your wife have questions, I am sure they would help.

Posts: 108
Joined: Jul 2014

This is a great sight for partners and family members of those with cancer.  You will get more insight into what we are really thinking, going thru, our battles and victories.  A lot of us don't want to "bother" family & friends with our fears and questions........I know I don't, they all think that I am a brave fighter and don't understand how I have been able to fight this. I just shrug it off and say, I do what I can do, I don't have a choice.  But inside, I am so scared and don't want to be "debbie downer" and have everyone cry for me. I've had breast cancer twice (at age 28 & 30)....Ovarian cancer stage 4.....diagnosed FINALLY at age 54 and a reoccurance almost 5 years later. In between all of this I had brain surgery for a colloid cyst (not related to the cancers). I would tell you to check the sight often, see what people are saying; it may help you deal with your wife's disease.  I can relate, as I have been married for 42 years, and it's not often we can share our fears and cry together...... and we really shouldn't spend the rest of our time together doing this anyway.......most of all, enjoy when you can! Your lives have not ended, but they have been changed. My best of wishes to you and your wife............please stay in touch......

Posts: 1995
Joined: May 2003

Hello all!  I was clear cell stage 1C in 2000, with a recurrance in 2006, and breast cancer in 2013.  I see you are getting lots of responses, and I'm sure you will get more.  I welcome any questions you may have.  And most of all, Love, (((HUGS))) and Prayers to all of you!

To the Essiac Tea:  after my first Dx I drank the tea daily.  While we always research before we do anything, I was not aware that some of the herbs in the tea can encourage estrogen production.  For me (as I learned much later), estrogen is a no-no.  When my doctor gave me the Premarin cream to use, my CA125 started climbing.  That's when he informed me that I should stear clear of all HRT of any kind, whether 'bioidentical' or not.  So, no more cream, no more tea, and I am cautious of other aspects of my diet/supplementation.  The black cohosh, milk thistle, red clover and other herbs can be very helpful to most women.  But those and others in the Essiac Tea and other preparations can be a real detriment to some of us.  My breast cancer, by the way, was 100% estrogen responsive and only 20% progesterone responsive.  I am currently on Aromasin for the five years to prohibit ANY estrogen production.

Stay strong, Ladies!




Posts: 39
Joined: Aug 2015

I was diagnosed stage 1C with grade 3 clear cell and grade 1 serous in 2012. I had a good prognosis post surgery, with Carboplatin for chemo. My CA125 at diagnosis was 34.

After treatment my CA125 was 7 and stayed low, rising to 12 and 15.  I had a level of 47 in May 2015 and in July 2015 it had risen to 102. Having a meltdown. 


Anyone else been here and all good?


gancman's picture
Posts: 1
Joined: Sep 2015


I was diagnosed in 2013 Stage 1C.  It will be 3 years remission on Nov 9, 2015.   I would like to talk with other survivors.  Please email me here.  I will look forward with talking with you.

Posts: 1
Joined: Jun 2017


I was diagnosed August 2016with ovarian clear cell carcinoma stage 1c high grade 3. I had a tumor the size if a watermelon. They did a radical hysterectomy with my omentum and appendix removed also. I did six months of chemo. I am now having so many abdominal issues. I have several hernias and they now think I have to have my gall bladder removed. I also have s mass in my breast they are watching. Ugh. ive read so many things about clear cell being aggressive and rare. I'm just wondering how you are doing and if you had any problems. Just a little scared. I'm awaiting some tests to have gall bladder and hernias repaired. 


bettyboop3917's picture
Posts: 42
Joined: Dec 2016

I am also fighting clear cell and have been for a few years now. I still have abdominal issues too from adhesions that have came from the surgeries I have had. I'm also getting IP chemo this adds to the adhesions. Here lately I have found that our whirlpool spa tub in the house has been working wonders on some of the pain and other issues I have been having. I am in it any where from a hour or two every night using the jets to genially massage the abdomen and this the adhesions.


 While clear cell is rare and aggressive it is also a winnable cancer. Kick this cancer in the rear :) 


Posts: 2
Joined: Sep 2017

For saying this is winnable, pretty scared here. 

Posts: 3
Joined: Apr 2017

 Just checking to see how things are going. Recently diagnosed with 1C grade 3 clear-cell ovarian. Have finished with chemo and scheduled for a CT scan August 3. Don't really know what to expect.

Posts: 2
Joined: Aug 2017

I, too, have Stage IC3 clear cell carcinoma of the ovary. My post-chemo follow-up appointment was on August 2nd. I had blood work done, CA-125 and exam, but no CT scan. My gynecologic oncologist stated that she didn't think it was necessary. I got the feeling that I could have made a fuss and argued my way into one, but was worried it wouldn't give me the definitive "yes, you're cancer-free" evidence I am desperately looking for.

@Simplicity: did your CT scan results help you? I'm experiencing more anxiety now that treatment is over than I had during surgery and chemo treatments.

Posts: 2
Joined: Sep 2017

Hi There. I was originally diagnosed with stage 1C clear cell and my initial CT showed a liver and kidney cyst. I wanted to make sure they were only cysts and asked for a CT post treatment and they said " only if I had symptoms"..which irritated me as ovarian cancer is known for being sneaky with few symptoms. I persisted and they opted for an MRI to see what was up in my liver..and they found the "cyst" was a tumour..and there were 3 more. I would pester them for a post treatment CT..even if you have to create symptoms, which I was ready to do if they wouldn't scan me. I am resistant to Platinum based chemo and now starting an immunotherapy drug trial. I would never have known about the liver mets if I hadn't pushed for a scan. 

Soup52's picture
Posts: 662
Joined: Jan 2016

I’m from the uterine board and my diagnoses was 3c  clearcell in 2015.i did have a scan after chemo was finished and it did give me some peace of mind . Now more than a year after treatment I requested another scan due to my high grade . Often they don’t want to scan unless you have symptoms , but I pushed and finally succeeded . I just had it yesterday and am waiting for results .

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