First recurrence and immunotherapy being offered!

Hi All--updates and info as I love when you all share new and hopeful treatments so wanted to do the same. As some of you know, I was dx in June '16-Stage IV, BRCA positive, 6 cycles of carbo/taxol starting in August (debulking after 4 cycles) ending in December '16. I was on a clinical trial with a PARP inhibitor from the start of chemo--could be on a placebo of the real thing (double blind). I just recurred (ca 125 steadily rising 5 then 8, then 15 then 73 (now 85) and my last post stated they did not want me to have the scan until end of August per the clinical trial protocol which made no sense to me. I had the right to come off but even before I said I wanted to, my surgeon saw my numbers and just said "scan tomorrow".

Had the scan which confirmed "nodularity" in my upper left peritoneum. They measure under .7cm and the report actually said "watch and follow up" so it was caught early.

I met my new oncologist yesterday (mine moved away) and he is a GYN oncologist specializing in immunotherapy (I am at Memorial Sloan in NY). He said I had many options and among them, an immunotherapy trial (he is running it). My family was with me and we all agree, this sounds promising and he said he has patients that so far have gone 18 months with no relapse. (The trial lasts almost two years). No chemo, no PARP (so it can be saved for another time) and he said if it doesn't work, the cancer is so small right now, there is time "without worry" to go on chemo. If it is working, this is all I do (infusion every other week or every week depending on the arm of the trial I am on). One arm is one immunotherapy agent and the other arm is two immunotherapy agents. The side effects are two pages long but the most common are fatigue and nausea. Same when I started chemo (list of side effects) but I had almost none (the inevitable WBC count getting too low a couple of times which can happen here too). I think its worth a try and really think starting chemo later (rather than 8 months after the last one ended) is helpful too. The drugs are Nivolumab and Ipilimumab (if you google them together, the trial comes up).

Your thoughts??????

Wishing you wonderful ladies a good weekend! Fingers crossed for many of us that good results are to be had with this!


11 Replies

  • Hi Maxjor,

    It sounds like we are in an identical situation - early days of a first recurrence. I like the sound of the trial you have been offered - if it were me, I'd go for it!

    Good luck!

  • Sounds good and as they say if doesn't work you can still have chemo . Good luck with whatever you choose and great you have options . Gives hope that they will soon have an answer to beating this .

    Love and best wishes Kim x

  • Sounds like a good plan! I am also in the USA and my hospital is connected with Sloan Kettering and my gyno/oncologist follows their protocol if it applies to his patients. I was also diagnosed in June 2016 with OC 3c, same chemo , debulking and more chemo. My CA125 was 7 after all that and all gene testing showed negative. Well, I recurred after only 2 months NED, and my CA125 shot up to 1125. I'm considered platinum resistant, so my dr. sent tissue samples of my tumor to Foundation Medicine for genome testing to see what treatment will be in my future. I think i understand this after looking at their website.

    Wishing the best for you, me and all the ladies in this world with a disease that takes a lot of courage!!

  • I too had to leave my trial (Avelumab) because of growth, and I'm currently waiting to go on another trial, as my nodes are not yet quite big enough to qualify. Sounds as if you have nothing to lose by opting for the trial with the possibility of much to gain. All the best.

  • I am in the U.K. And on an immunotherapy drug trial which had shrunk the tumours in my colon and peritoneum.i have had 11 treatments so far .

    Although the list of side effects is very long , very few have affected me .

    It's well worth a try

    Best wishes Val

  • Hi Val, that's great news! If you don't mind me asking, which trial are you on? Thanks, Vicki x

  • Hi Vicki

    I am on the KEYNOTE-177 pembrolizumab trial . I have had 12 treatments and no sign of tumours now , however I do have mismatch genes

  • My sister met with the same gyn-onc at Sloan. He offered same trial. She lives in Philadelphia and was able to be offered the same trial at Penn. She is hoping to start trial in 2 weeks. Good luck to you!

  • Sisafighter---would love updates about your sister as she goes! I think I am going to start around the same time (if PARP trial I was on confirms it was the placebo, otherwise I have to wait 4 weeks). Thank you for letting me know! So glad she could do this near where she lives.

  • I will! Good luck to you also. Keep me up to date on your trial.

  • sounds good...go for it! xx

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