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Hi,
If I may, try to get a 2nd opinion on BOTH medical oncology and immunology.
If I were you, I will look for clinical trials and MASS GENERAL(MGH) is among those research hospitals (and Sloan-Kettering) that can provide a better chance for finding clinical trials.(sometimes they has the trial set up but not always be known right away);that is why you may need to talk to both departments to know what are available.
I find some clinical trials under this web site,but I did not go into the details of each one,so please forgive me if not suitable for you. Those are #2 (XL184);#4 (PDT);#21 Pazopanib;#33 (Adoptive Immunotherapy);#36 CPI-613
#50 LY-280-1653 AND #60 cd8+young TIL.God bless.
Ugh! I hope this part of your ride starts the upward climb soon! Hopefully the tests will help to figure out the next step.
I know for me surgery is not an option, but Radiation was. I wasn’t given high odds for success, but was honestly told they were trying to slow or stop the progression. And it worked for a while.
I don’t know your whole story, but I would ask if anyone on your team has any ideas, possibly a little out of the box. There are many radiation therapies now, as well as trials that are proving to stop, if not reverse, progression.
Good luck with the biopsy.Thanks much guys! Yes, I have had 7 different opinions from many leading health care centers. I am now going on my 4th regimen of chemo as surgery and/or radiation are not options. All of these regimens were the same recommendations by AtlantiCare, Fox Chase, U of Penn, and Thomas Jefferson.
Thanks for your thoughts and prayers!Hi BJ, so sorry to hear your latest. You are supposed to tell those tumors, “no, no, no you are going the wrong way!” I am wondering if you have thought about a 2nd opinion? Most of our members have had 2nd even 3rd and 4th until they find a treatment that takes hold. Four kids? That is one of the best RX you can have. You do have a great attitude and that is half the battle. Hope the stent placement goes well. Please keep us nosey ones informed, Wishing you the best.
BJ….fingers are crossed for a successful stent placement and that the upcoming biopsy reveals tumor sensitivity to the next generation of chemo drugs. Hang in there. Tons of good wishes are heading your way.
Hugs,
MarionWell, had a repeat PET/CT scan done last Tuesday and, unfortunately, not what I was hoping for. In summary, the tumors have all gotten larger, the metabolic activity has increased significantly, and more mets were found.
I had bilateral biliary stents placed in September and now one has been infiltrated with tumor. I am currently in Thomas Jefferson Hospital awaiting a stent replacement and another biopsy (to submit for genetic sequencing) in tha AM. Really hoping this isn’t a sign of things to come in 2014
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