Very aggressive Clear Cell OC

[Elaine2016]

Hi,

Are there ladies out there who have been told they have very aggressive clear cell OC and that if Caelix doesn't work for reoccurrence, the only next option is a clinical trial?

I'm hoping others have found some benefit in the trials and that it's working?

Elaine X

[Microbabe]

I have clear cell 1c1 at the moment I am on the 4th cycle of 6 first line treatment and have not thought beyond this... I do know that clear cell has a high rate of recurrence but I will cross that bridge when I come to it. I'm try to stay as positive as I can be with this diagnosis. My onc says it's quite rare so she did not know much about it. I do have faith in the treatment I am receiving... I guess any type of OC has chance of recurrence and it is a worry but I'm trying to not let it overwhelm my life and keep things in perspective. If the worst happens and it does recur my onc has not discussed treatment options just that she will treat it!! Obviously I am hoping that it does not come back but if it does I will kick its butt for as long as I can 😃😃

[Choski]

I'm the same as Shellygirl with clear cell 1C3 (it's ALWAYS grade 3). I finished my chemo at the very end of July and have just had a NED status. My CLA 125 was not an indicator as it was only 30 when I was diagnosed however I'm having it measured for trend.

I remain positive that I'm NED at the moment and that's all I can ask for. Not sure about next steps for this ovarian cancer type, it's worth ringing the OvaCome free helpline or even posting on the Inspire ovarian cancer site.

Take care,

Clare

[Angel-teal13]

Hi Elaine 2016,

I also have clear cell 1C ovarian cancer. It was diagnosed in June 2014. I had 6 cycles of carbo/taxol which finished in Dec 2014 (after full surgery to remove everything) and I have been NED ever since! My CA125 was never above 36 , but my oncologist says it is useful to watch the trend (as Choski said in her reply) and so I am watching for it doubling or even several raised readings. I enjoy every day and try not to think too far ahead. My oncologist assures me there are several avenues for further treatment should it recur. I have felt very well since the treament finished other then being very tired for the initial few months post treatment. Like you, I was very worried about the future, but with the passage of time and the knowledge that many people on the ovarian sites are living well with OC as a chronic disease, I have begun to feel that it is not 'the end' if it recurs, but rather a condition that will never be cured ,but manageable for many years with good treatment and a determined attitude. Also worth adding , my oncologist is very eminent and she does not describe clear cell as very aggressive. She always stresses that it is very complex and each person's cancer is very individual. We all respond slightly differently to clear cell because we are all different in the first place. So in many ways, we just have to watch, wait and hope. It is not predictable. Reading other experiences on this site is often very encouraging and helpful. You are not alone. There are plenty of clear cell ladies and clear cell 1C too. All the best.

Angel-teal x

[Howick01]

I think I mentioned it before.A scientist in Glasgow is being funded by TOC to do research in recurrence of clear cell .A drug used for treatment of rheumatoid arthritis is one of them.Sorry forgot to mention it is existing drugs he is using to cut down costs and time for drug to be available.

Hope he succeeds as I have clear cell and volunteered my story to appear beside his.

Take care xxx

[tanyanpc in reply to Howick01]

Hi Howick,

Do you have any information what kind of repurposed drugs they are using in their research project? I have advanced clear cell and looking into taking additional medications along with chemo. I read that metformin plus plaquenil could be a successful combination to increase chemo sensitivity.

Thank you.

Tanya

[tanyanpc]

Hi Howick,

Do you have any information what kind of repurposed drugs they are using in their research project? I have advanced clear cell and looking into taking additional medications along with chemo. I read that metformin plus plaquenil could be a successful combination to increase chemo sensitivity.

Thank you.

Tanya

[Howick01]

Sorry -I do not know and probably for obvious reasons-so that we do not experiment!

Take care xxx

[tanyanpc]

I understand. Thank you for bringing up the information about the trial. I am reading at the moment "Surviving terminal cancer" by Ben Williams - 20 year survivor of glioblastoma. it is quite interesting. He attributes his survival to repurposed drugs.