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Clinical Trials for UPSC Progression - Message for Barbershopbari

Posts: 20
Joined: Feb 2017

This message is for Barbershopbari, who posted Aug 21 on an older thread. Your wife's situation is similar to mine, but I had no fluid buildup, and I never received Avastin. (Apologies if I am confusing posts!) I completed a second line of treatment with doxirubicin liposomal + carboplatin in June. Treatments delayed throughout due to low ANC. Still, I finished, with a "no radiographic evidence of disease" scan on June 30th. My onc assured me my cancer was not gone, it just wasn't visible. Monthly blood draws and port flushes were scheduled, with another CT at the end of August, in two months. (This alerted me to just how quickly they expected my cancer to return to visibility.) During my last two chemos, my CA125 rose from 9 to 30, and then 31. The level went up to 51 when I had my July labs done. It's back, I told them. My onc ordered a CT in early August, confirming the cancer is back, with a 3cmx2cm mass around my vaginal cuff, some lymphadenopathy, and a small (<16mm) nodule on my liver. So, it's back, it's not going away, it is never going away. I asked my onc "have you done all you can for me with conventional treatments" and he said yes.

I had connected with Fox Chase last December when my cancer recurred after frontline treatment (Stage 1B, Grade 3, mixed histology) and the oncologist there had a tumor profile done. I don't have very many mutations, none that are targeted as of today by the "precision medicine" drugs we see and hear so much about. But there is much in the pipeline! A clinical trial I am considering, NCT02725268 targeting PTEN, PI3K and mTOR mutations), is being run at 71 locations all over the world, including Fox Chase and UPMC (Pittsburgh) and Indiana - closest to Barbershopbari in Ohio. Consideration for this trial would depend on your mutations, performance status, blah blah blah.

Another trial I am considering is NCT01827384, using molecular profiling based targeted therapy in advanced solid tumors. A trial site for this is at UMPC. I'm talking with these folks early next week. This study includes Velaparib, one of the new PARP inhibitors. Sidebar: I read yesterday that Velaparib failed clinical trials for NSCLC and triple-negative breast cancer. Two of the top cancer baddies. The market research report indicated that Velaparib's company (AbbieVie) may cede the PARP market to Pfizer (they bought Medivation's talazoparib), AstraZenca's Olaparib (aka Lynparza, the first to be developed in this class of drugs), and Clovis Technologies Rucaparib. Very promising research on these PARP inhibitors, including the good news that you may not need to have a BRCA mutations for them to have efficacy. PARP targets PTEN.

Back to Barbershopbari - Was her tumor profiled? The company that performed my profiling has a link within the report called "Clinical Trials Connector" that lists trials geared toward my mutations and tissue type. There were 88 trials on this list (it is updated every 24 hours) when I first generated it. My husband and I reduced these to 18, mostly based on where and how far I was willing to travel. We further reduced this to nine, and are looking intently the two I mentioned above. [Side note of hilarity: in one of the 88 trials listed you had to have a uterus. WTF? Truly EARLY stage.]

In the meantime, I take a number of supplements, and continue to take Metformin, eat right, exercise, continue to work. I have been very, very lucky per my onc in that chemo has had almost zero side effects for me. The Ativan helps with the anxiety side of things. And to be honest, when the second line treatment afforded me no better than a couple of weeks respite, I now allow myself a glass of my beloved sauvignon blanc a couple of nights a week (usually while I am watching  yet another character bite the bullet on Game of Thrones. Things can always be worse...and winter, of course, is coming.

Remember, it's a marathon, not a 5K.


Posts: 1083
Joined: Jun 2016

A very interesting post and I love the GOT reference! Humor is always appreciated when dealing with what we're coping with. You made me smile today...thank you! Keep us posted with how things are going for you. I hope you find a trial that makes a positive difference for you.


CheeseQueen57's picture
Posts: 935
Joined: Feb 2016

Also love the GOT reference!  I get my treatment at Fox Chase. Just had CT scan today, a repeat from June when we saw a very little bit of ascites and some "dirty fat strands". Hoping for nothing cause I'm going to Spain in 22 days!

Posts: 20
Joined: Feb 2017

Good luck CheeseQueen57 (two thumbs up on your picture). I know you get your treatment there. Someone else on here does, too. A good center, very helpful. I'll keep everyone informed on my progress with these trials. Right now I just hope I qualify for one!


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