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He was signed up to do a clinical trial at Johns Hopkins involving immunotherapy, the pancreatic cancer vaccine (GVAX), and SBRT. After the usual rounds of scans, Johns Hopkins found a tumor in his liver, a half centimeter in size. In June when we were there for the clinic, they told us they saw something in the liver, but were not concerned about it. So, after 2 months of getting our hopes up, they squash them with these results. We are livid, but most of all we are sad.
The doctor there tells us that he recommends my dad stay on the chemo regiment that has been working so far (Gem/Abraxane) until/if his tumor markers rise. At that point, he recommends Folfirinox, which he believes my dad will tolerate well. After one cycle, he says he should be scanned again, and perhaps start SBRT. If all chemo fails, he tells me that there are clinical trials with immunotherapy we can look into. He claims there are 'cards in our back pocket'.
The local oncologist recommends 3 more cycles of Gem/Abraxane. She also says the tumor in the liver cannot be biopsied because of its location.
We really had high hopes for this trial. I am not sure why they weren't concerned about what they saw in the liver the first time around. Why not do more scans?
I have asked for copies of all the scans from Johns Hopkins, just in case I want to send them out to different institutions. I am kind of at a standstill about the next move. Should we try other facilities like Sloan or Penn? Or is this really the only course of action at this time? People on the Facebook groups have said they have seen and know others who have had great results on Folfirinox, to the point of it killing off mets. The doc at JH claims chemo cannot get rid of mets.
Any other suggestions?
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