Hello everyone, Ben and I were at MD Anderson over the weekend. CT scans on Saturday and met with the Doctor on Monday. Our goal of the visit was really just to confirm what local radiologists were seeing on Ben's scans vs. what MD Anderson might see - and get any advice on next steps after this protocol is done. (He is currently in cycle 3 of his second round of Gem/Cis - the first round ending in April of 2011) and get any advice on what next steps would be after this full regimen.
Overall, MD was pleased with where Ben is at; the primary tumor seems really mostly stable since last April; they noted the slight growth that caused the blockage at the end of his stomach that resulted in a gastrojejunostomy (I can't believe I can spell that now without looking it up) last October, and the growth that abuts the pancreas that accounted for the severe pain in December. All of which appears stable. The doctor recommended that he continue with the current standard Gemzar/Cisplatin protocol (Although MD's recommended protocol is every other week vs. two weeks on and one week off, but we are doing the latter).
A few interesting notes from the Dr:
1) Stick with CT scans (we had brought a combination of CT and MRI scans done over the past few months). For consisteny of reading they highly recommended CT scans as being more accurate - especially because Ben has growth around his stomach they said CT scans do a better job in that area.
2) They were surprised that after the 1st, 8 cycle regimen was completed last April that Chemo was stopped altogether. Their recommendation is they typically do indefinite "maintenance" consisting of either Gemzar every other week or possbily oral Xeolda or Tarceva (Erlotinib). They said they have been doing studies in pancreatic cancer and have found that for people with a certain mutation (didn't get what it was) they respond positively to Tarceva. They are going to test his tumor for the mutation and said if he's positive they will likely recommend that after he completes the Gem/Cis protocol.
3) They found a small blood clot in his right leg; they said it looked like it had already started shrinking since the scan done at home on 3/5/12 - however to be safe they started him on the blood thinner Lovenox. This is why we wanted a second opinion on scans. Why didn't our local radiologists see this?
4) The primary tumor is becoming "fibrotic" they read this as a good sign that's it's reacting to the chemo (as it is killing the outer membrane) and overall it has been stable since scans done locally on 8/3/11.
5) They are watching an area of "subtle nodularity" along the greater curvature of the stomach. This was not seen last April and it may represent a small local implant; but they are hopeful this will shrink given the favorable response the GEM/Cis combo seems to have with Ben.
6) They did say if they see all the areas "shrink away" they may recommend local radiaion in the liver as well - but for now continue with the current protocol.
The doctor said they don't "put numbers" on prognosis - she said right now he appears so healthy and the numbers wouldn't represent where he is now anyway. So, just continue forward. Overall, I would say it was a very positive visit.
One thing I do regret is I didn't bring up the issue of surgery. I know it's been discussed on this board for those who have Stage IV (and I have now read a few examples of where people have done that now), but both originally at Mayo Clinic and subsequently at MD, they both ruled out surgery as an option given the Stage IV diagnosis. They didn't bring that up yesterday (nor did I think to ask), but I will follow-up with our local oncologist again on that.
So - that's it, sorry for all the detail - but this helpe me document the event for us (and others) as well.
And now for the BIG NEWS!! Our very own Marion is in Fort Lauderdale today to catch a flight home - and I get the priviledge of meeting her in person for coffee. How FANTASTIC is that? I am so excited.
Thanks everyone as always for all the support!!
My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis. He was 51 at the time and lost his battle on December 26, 2014 after a long stubborn war. Don't give up!