Anyone else have this happen?

[Wicomico]

Hi. I have clear cell ovarian cancer, the fun one. I have had the hysterectomy, oopherotomy whatever...in other words, there is nothing left there. I completed the standard carboplatin, taxol and avastin. I am on maintenance Avastin. My latest bloodwork shows CA125 increasing and gyno-oncologist "felt something in there" today. CT Scan tomorrow. If any of you have had the clear cell and had it recur this quickly, I would love to know what you did next, how successful, etc. That first round of chemo pretty much kept me bed-ridden due to pain and severe fatigue. Not sure that I can do that again, if that's what the doc recommends. Thank you so much to anyone who has thoughts on this.

[Ljcoco226]

I have clear cell and had a recurrence 1 year after frontline and went through a second round of carbo/taxol with Avastin. It did not work completely so stayed on Avastin. 3 months later, started to have growth so option of chemo again, Gemzar/Cisplatin this time or trying a clinical trial using immunotherapy. I chose the clinical trial and will find out in a few weeks if it is working. There is unfortunately not a ton of info or research on OC clear cell so a lot is trial and error. You may be a candidate for radiation, depending on where it is located. Mine was in multiple lymph nodes so not a possibility. Best of luck.

[Wicomico in reply to Ljcoco226]

Thank you. My best wishes are with you!!!!

[Jules_PPC]

Usually if it recurred within the first 6 to 12 months, after frontline treatment they consider you platinum resistant, they have other drugs they can throw at it.

I went to MD Anderson for a second opinion, and the Dr there told me Avastin hadn’t been proven to extend the life expectancy for more than a few months.

I have Primary Peritoneal Cancer though. I turned the Avastin down and just did three more treatments after my surgery.

Everyone is different, so don’t let your doctors box you in with the norm.

Good luck on your journey.

A lot of people have a recurrence quickly if they are platinum resistant.

[Wicomico in reply to Jules_PPC]

Thank you for the information! Best wishes to you!

[Sherryp]

I was on Avastin for maintenance after the initial treatment for ovarian cancer, but it was only 6 months and my cancer recurred. I am on Lynparza and Avastin now after my third recurrence. I have cancer now, but we are trying to slow the growth down. Have been on since November 2019 and so far it is working.

[Wicomico]

Hi Sherryp. My hesitation is in doing the carboplatin and taxol again---those side effects pushed the limits of my tolerance! If you don't mind saying, how/what are the side effects you ate experiencing on the lynparza? I am in the moment of trying to decide whether to get anything other than the Avastin.

Thank you. Best wishes for you.

[Lizchips]

Hi, I have stage 3c clear cell ovarian cancer. Diagnosed April 2014. I did 18 rounds of chemo including intraperitenil chemo. Every time I received IV it was either paxitaxol ? Or carboplaten 2 times cysplatin but was too strong. I asked my Dr what treatment she would want if she was me. Told her that's what I wanted. I know she went very aggressive in my treatment. But I've been fortunate to have had no reoccurance. Intraperitenil chemo if you are a candidate you should ask for. It's uncomfortable because they

Put chemo in your abdomen. Takes a few days to not feel full. But adds years onto life without reoccurance. My doc uses it. Was done at city of hope. Not all hospitals do it. Best wishes for your success. Liz

[Lizchips]

My only issues. Day after got shot for immune system so to stop joint pain was told to take claritan but no D. Took for 5 days. Also if I woke up not feeling quite right I took lorazepam 1mg. Kept me from getting nauseous. Had to drink lots of water too. That was the hard part for me. Best wishes, Liz

[Lizchips]

Oh, forgot I was never on avastin. With taxol and carbo. I have been on no maintenance drugs.

[Wicomico in reply to Lizchips]

Thank you so much for your feedback...best wishes to you!

[Waterhead]

Gave had same as you don’t know what’s next?

[Wicomico in reply to Waterhead]

No idea...

[ipii]

Hello, did you change your diet though, if yes what did you do for it. Also did you do genetic testing?

[Lizchips]

I had clear cell stage 3c2, I didn't have a reoccurance, but I did have intraperitenil chemotherapy. It's supposed to keep reoccurances at bay. Might ask about it. Best wishes, Liz.