Clear cell cancer - surgery only?

[Belladrum]

Hi everyone. I am new here. Would be grateful to hear anyone who has had surgery only for clear cell ovarian cancer. I had surgery in March and was diagnosed stage 3B, but oncologist advised chemo not proven to be effective and with added issues with COVID I opted not to have chemo. Unfortunately recurred quickly, so have had more surgery with colon removal/ stoma fitted. I am so uncertain what to do- feel pointless having chemo that has so many side effects with no known benefits, but need to have chemo to get on any trials....

I know might sound defeatist, but would prefer to have a shorter life that is “normal” rather than a slightly longer one that is just round after round of treatment that means I am ill.

Would be so grateful to hear what others with clear cell have done.

Thanks in advance!

[Neona]

Hi I have lots of advice about this but am in the UK - ate you in USA? You need to get on a trial for an ATR inhibitor- do whatever it takes even if that means having chemo first. If you have chemo with a stoma I recommend requesting iv fluids before / after because my kidneys were damaged and I think dehydration due to the stoma may have been the cause. I have been on the ATR inhibitor AZD 6738 for 2 years and 8 months so far and my total targeted tumours have reduced from 13.6 cm to 6.3 cm so far. There is a trial called Atari which is for the same drug in combination with Olaparib and I have 2 friends who have had early success with this trial.

[Belladrum in reply to Neona]

Thank you so so much for replying Neona! So hard to get advice specific to clear cell, and just so undecided about whether chemo worthwhile. Very much appreciate your advice. I am also in UK and had heard of these trials, but my oncologist did not think any trials would recruit me just now. If I felt chemo would help to give me an extended life with reasonable health, would have it, just not sure if worth it. Take it you would say it is? Many thanks again! X

[Neona in reply to Belladrum]

I had to have failed at conventional treatment to be accepted on my trial which is a phase one trial called Patriot and the drug is AZD 6738 alone. I don’t know the protocol for Atari and Peacocc though.

[Belladrum in reply to Neona]

Thanks again Neona. Yes - I think all the UK trials need you to age tried chemo first unfortunately. Just do not see the point in weakening our bodies further with no proven benefits...wish we could,go,straight to the trial drugs.

[Neona in reply to Belladrum]

If you are unsure about the path to take I recommend getting a second opinion. I decided to pay for mine to get a quick appointment and saw Dr Rebecca Kristeleit at the London Clinic. It cost £360.00 I think but was worth every penny. It was obvious that my local hospital had no knowledge at all about clear cell.

[Waterhead]

My doctors recommended not to remove the clear cell by surgery said would have no benefit so they went on with carboplantan

And taxol and immunotherapy worked for a year now on to the next trail drugs

[Belladrum in reply to Waterhead]

Thanks for message - good luck with the trials!

[Wicomico]

Hi. I am sorry that you are going through this. I had clear cell OC, stage 2, diagnosed and surgery for removal of everything in Sept, 2019. I immediately underwent 6 rounds of chemo, carboplatin, taxol and Avastin. When that was finished, my oncologists recommended 1 year of maintenance infusions of Avastin. I have been on Avastin for 6 months. I hated the chemo, but it seems to have been effective. The worst side effects were "chemo-brain" and total exhaustion, along with strong aching. However, I was able to function, do things I wanted to do (mostly) etc. The side effects were worse in the week following, then generally eased up before the next treatment. There was a cumulative effect, so that by the 5th and 6th rounds, the side effects lasted longer. I am still very tired with the Avastin, but no muscle and joint pain, etc. That mostly sounds bad, but I will say that my quality of life is pretty darn good. After the chemo, I swore I would never do it again if needed, and my family had to talk me into the maintenance Avastin. Covid has shut me down more than anything, as I am very very cautious about being around people who I'm not sure are safe. That being said, I have been able to have time with my family, and do some things on my 'bucket list', and am, as far as I know, still clear. I am totally with you on the quality vs. quantity of life. I am glad that I did the chemo, and am glad that the Avastin seems to be keeping it at bay. My docs and family have all said to me "give it a try, and if you can't stand the side effects, you can stop". Also, I was 60 when this started, so I'm sure that has added to the "side effects" and that some of the exhaustion is just that I am not a spring chicken anymore hahaha. Best wishes to you. I got through it by keeping in mind one major thing from my bucket list, and saying "I am going to go scuba diving when this is over". And I could go...but then Covid arrived! But I will go, as soon as it is safe to travel!!

[Belladrum]

Thank you so much for such useful advice! So pleased to hear your treatment keeping things at bay, and hope you get that scuba dive soon! Covid has certainly complicated everything!

[HappyGoLucky66]

Hello. I have clear cell as well. had a hysterectomy last year in Sept and started heavy chemo , felt weak but was on the mend then had a reacurrence this last Sept on my adominal wall , had surgery on that , they started me on a hormone blocker I had a bad reaction , so now I am waiting to see what is in store for me now. I suffer from dehydration, anxiouty and depression I try to supress. I have to keep my focus on my spirtual walk or I will worry about tomorrow plus I find peace in the word. I am 54 and look forward to being a really old healthy woman talking to others of how to climb out of the mouth of fear.