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what to do now???

Alnik
Posts: 56
Joined: Feb 2012

Short version of my situation. My last three treatments we used cytoxen and on the fourth visit the ca125 went from 84 to 115. We took January off from treatment so they could do Genomics testing to help target what might work now. Testing came back not offering anymore options i do my scans this Tuesday. Has anyone else had ca125 go up during treatment?Im still hoping PARP inhibitors get approval soon. Ive been trying desperately to find a clinical trial Does anyone have experiance with the PARP drugs and how they worked for them?Sorry my questions become repetative but im constantly looking for answers. Does anyone have numbers higher than 115 that keep fluctuating( drop down than go back up)Or is this just the cycle of this disease?One last question has anyone been in treatment a year or longer and than finally reach remission? Thanks so much as you can tell the nerves are setting in and alittle bit of panic as well

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

Did your testing reveal any particular mutations? It's my understanding that PARP inhibitors treat certain Ovarian cancers, but not all. I have low grade serous carcinoma, K-RAS mutation. I enter those into the search window at clinicaltrials.gov and that has helped me find appropriate trials. I have discovered that even though a trial may be listed as being offered at certain locations, by emailing the trial research director I find that the trials I'm interested in will be opening up at a clinic near me. If you DO have low grade tumors, I can tell you more.

Alnik
Posts: 56
Joined: Feb 2012

I did do the genetic testing last year that showed im BRAC 1 posative and i believe its low grade serous carcinoma. I have not gotten the Genomics testing results yet i see my Oncol. Tuesday.I would love to hear any info you have on the trials or how to better access them.Hopefully after Tuesday i may have a little more info to work with Thank You

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Hi Alnik

Sorry your numbers are going up. Mine are also. However ive been on a PARP drug, olaparib , since  April 2012. It has worked wonderfully until just recently when my ca 125 started to rise. i had to have a high grade tumor before I could get in. I'm also BRCA negative and for the trial that was fine..Some PARP trials require the BRCA mutation I believe. I'm at the National Institute of Health for my trial. The side effects from this drug was practically nothing compard to IV chemo. I hope you find a trial open for PARP drugs:).

Morkies's picture
Morkies
Posts: 9
Joined: Sep 2013

I'm sorry that your CA 125 level is rising.  The places to search for clinical trials are http://www.cancer.gov/clinicaltrials and http://clinicaltrials.gov/.  Each trial lists specific criteria and whether and where recruitments are occurring.

I began a clinical trial for olaparib, a parp inhibitor, in January and had to meet the following requirements:  a deleterious BRCA mutation (I actually have two mutations, one on BRCA 1 and one on BRCA 2), have stage III or IV ovarian cancer, have recently completed a platinum-based (I used carboplatin) chemotherapy (I think it's an eight-week window), and have a partial or complete response to the chemotherapy.  My oncologist brought parp inhibitor clinical trials to my attention and the oncology pharmacist (she was wonderful and such a sweetheart) found the website, trial appropriate for me, and hospitals/doctors participating.  Luckily for me, my gyn/onc group was participating and I am their first to enroll; they have five openings.

I will have been on olaparib one month Tuesday, so I don't yet know its efficacy.  It's a double blind study, so I don't know for sure if I'm taking the drug or a placebo, but I think (and hope!) that I'm on olaparib because of the nausea and fatigue that had disappeared after chemo has reappeared since the olaparib.  

Hopefully you can find a clinical trial that meets your needs, is recruiting, and near you. If I can be of further assistance, please let me know.

Best wishes,

Linda

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

I have not been in your exact situation but want you to know that I am sending lots of prayers your way that you find a treatment with good outcomes.

Kelly

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

I don't believe that PARP inhibitors will get FDA approval in the foreseeable future. There are 5 drugs in the works (Olaparib, Rucaparib, Veliparib, Niraparib, BMN-673) but even if phase 3 trials are successful, we are still years away from approval.

To my knowledge the only currently recruiting non-blind PARP trial for recurrent ovca is ARIEL2 sponsored by Clovis Oncology / Rucaparib (# NCT01891344). It is designed for both BRCA+ and BRCA- women, though number of spaces for BRCA+ is very limited. All other PARP trials are for maintenance (remission following platinum chemo). I have been trying to get enrolled into it since September, so far unsuccessfully because of their biopsy requirement.

My situation is a little different from yours, I don't have fluctuating CA125, it's constantly on the rise and in the 300's. No treatment. My genomic testing was confusing at best. It came back showing TP53 somatic mutation and recommended trial was Merck MK-1775-004 (# NCT01357161). However when Merck lab got the same genomic test redone on the same tissue sample, they didn't find TP53 mutation and I was declared ineligible for their trial. Go figure...

Good luck to you!

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

within the ranges that yours are and I'm in long term chemo treatment. My ONC tells me he isn't concerned and looks for trends and other signs of progression, which luckily aren't showing up. Good luck on your scans. I'll be waiting to hear of your results.    (((((HUGS)))))   Maria

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