An update and what’s next!
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Oh, Patty, this is MUSIC to our ears! Fantastic! With hope you get miracles and you are a miracle! I am doing cart wheels and word cannot express how happy I am for you! You are leading the ways for others.
Patty…..fantastic, glorious, incredibly and welcome news, skipping right along with you. Patty, would you mind re-posting this in the NCI MATCH thread?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=104388#p104388Thanks a million,
Hugs,
MarionWell, two months after taking the ECOGEAY131-treatment arm P trial in the NCI MATCH Program, I just returned from MD Anderson from a scan and bloodwork. I had 6% decrease in node sizes and also stability. My bloodwork has not been affected at all….actually it is looking better every time I have a lab draw. Other than diarrhea and some slight abdominal discomfort occasionally, I have not had any other side effects. I am the first cholangiocarcinoma patient in THIS arm of the NCI MATCH Program….and it IS working! Skipping….skipping…..skipping right along in life!
Marion;
I just had a tumor sample done in November FOR the NCI Match Program. That is when it showed I had the loss of P-TEN. I believe they will not do another biopsy but go off the one already taken. I have read up on the drug I believe they are going to use and it also mentions the TP53 gene…which I also have. Seems like a perfect fit for me to try and bide my time until immunotherapy is a more viable option. Thanks for your input….and yours also Lainy!!Patty….I believe it is an oral drug. Found some information http://www.gsk-clinicalstudyregister.com/study/115717#ps
MATCH was halted for interim analyses, but is expected to resume soon. Was there any talk of fresh tumor sample?
Hugs,
MarionPatty this sounds like you are in essence a Miracle as you keep slamming them down one at a time and then you are lucky enough to go on to a new treatment. Just keep kicking that CC to the curb as more treatments seem to be popping up all the time now. You have a great spirit and outlook and that my dear, is just what you need to win! Looking forward to your next PROGRESS report!
I just returned Tuesday evening from MD Anderson after having a bone density scan and a CT scan. The bone density scan shows that I have osteopenia which doesn’t surprise me with all the chemo/radiation (three separate times) over the past 5+ years. I have started a nose spray and also taking a couple of different vitamins to hopefully stabilize or improve my bones.
The Ct scan showed that the 6 weeks of radiation I just finished in March on a peritoneal lymph node was successful. Dr. Javle said my main tumor is calcified and showing scar tissue which he rarely sees as most patients die before it gets to this point (in patients who have never had a resection or removal of their tumor). BUT, they have found some very small lymph nodes (they were very small on the last scan) and now they are about 1 cm). Dr. Javle said we could wait two months and re-scan or that Dr. Funda Meric Bernstam was getting an arm started in the MATCH Program for the Loss of P-TEN which I have according the my last biopsy. The drug is from Glaxo Smith Kline and was used for prostate cancer in the past (it was FDA approved for prostate cancer). BUT, it is in phase two for the loss of P-Ten AND she was just waiting for an arm to open to get this mutation in for an arm in the Match Program. I should start the trial within the next two weeks and they will release more info to me at that time. My bloodwork has already been approved as most of it is in great shape. I will keep you posted as this progresses. I am ready to be a live lab rat……there has to be a first for someone in every trial…..right?
Never giving up~~
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