Monday, June 17, 2013

Up First, Boston...

I had my visit with the Docs from DFCI today to review my current status, post transplant, and to discuss next steps.  Now, if you remember, there were two varying opinions as to my direction with respect to the transplant.  DFCI wanted a full four rounds of RVD (referred today as "cybordene" or similar), followed by a new harvest, then the transplant and then consolidation.  Mt Sinai had a differing opinion saying that we can see the chemo sensitivity when I was put on the Prednisone.  For that reason, let's go straight to the transplant.  If things don't go as planned we'll consider consolidation.

When I last saw Mt Sinai I asked about next steps to which Dr J paused and offered to get Dr R's opinion first, then we'll discuss.  So I guess Boston is up first!  Their recommendations (and I've already got my opinions but will hold my comments till later) are as follows:
  • Do an RVD type consolidation - around 2 to 3 cycles
  • go on a Rev and Velcade maintenance 
    • keep Velcade sub cutaneous (less p/n)
We also discussed new drugs.  Daratumumab and Ibrutinib are both very new and since I currently have no disease I wouldn't be able to get these drugs (I don't fit on any of the trials).  Pomalyst is good but I'm not relapsed yet so he wouldn't consider it.  Kyprolis is good but velcade is better as it has less side effects on cardio pulmonary systems.   If Velcade wasn't working then Kyprolis is a solution, but if Velc is still working then that would be the way to go at this time.

I need to confirm my dates at Mt Sinai (sometime in July) but for now I'm getting back to work and prepping for a few days off next week!



Terrij said...

Good to hear you are doing so well. My daughter had Velcade/Dex 4 rounds before her transplant which put her in complete remission. The Velcade gave her an irregular heartbeat & blood clot so now she is on heart meds. After transplant she was put on Revilmid maintenance even though she was in complete remission. She started out at 15mg, decreased to 10mg then 5 mg because her counts kept getting low. She is off now but we are not sure if she will be going back on. She will be a year out of transplant in August. She goes to Thomas jefferson Hospital in Philadelphia.

rugbyhubby said...

Hi Terri - second time leaving a commetnt as I wasn't logged in the first time! :)

This is a GREAT story...I know the docs will have me on something. I'd rather avoid the Velc but I know it's a good thing. Just a matter of how long. I was on Rev for three years - the monthly phone calls were nuts!

Thanks again for reading and writing (now we need some arithmetic!)