Monday, March 9, 2009

The Next Steps

So now's when the fun starts!

Met today with the folks at St. Vincent's. Where I will be looking for direction from Dana Farber it looks like I will be doing the implementation at St. Vincent's. They confirmed what we already knew and we discussed next steps which could start as soon as 2-3 weeks.
The Process: RVD - Revlamid, Velcade and Dexomethazone (sp?) for four cycles is what's being initially outlined. A Cycle is basically a month. Revlamid is an off-shoot of Thalidomide (the sedative that was originally given to women w/ morning sickness only to cause births of children without appendages - sorry - that was kind of gross). Bottom line, Revlamid, in conjunction with Velcade are very useful in pushing back the issue I'm facing, Myeloma, and work better than Thalidomide due to a chromosomal make up of mine (17p apparently is abnormal). In addition to this Dexomethazone (a steroid) is used and the three drug cocktail will purportedly push down my plasma cell myeloma levels to a degree where harvesting would be optimal. The intention is to kill as much as possible (w/o killing me of course) so that my t-cells can then be harvested resulting in a collection that has as little of the damaging antibodies as possible. This cocktail will help achieve that reduction and they expect this to last approximately 4 cycles (4 months). Side effects of these drugs are minimal - worst piece is 'neuropathy' or loss of feeling in fingers and toes - this can be controlled and drug amounts reduced to make sure this is temporary. Beyond that the steroids are supposed to keep me extremely energetic (and will potentially make me gain extra weight - let's hope those Perfect Pushups and Pullups are being actively pursued!) Only other aspect in which we need to worry is the revlamid - this is derived from Thalidomide - there can be absolutely no potential for pregnancy during this time as results will only be bad. Nuff said (and we're not looking for anything further!)
Harvesting: This process can take as many as 6 days and they will attempt to harvest for at least two, potentially three transplants ("...and if you act now...we'll throw in another harvesting at no extra charge!") This will involve me having a catheter in my neck for the 6 day time frame, visiting St Vincent's for approximately 2 hours per day while they give me something to "rev up the t-cells" and then extract. All of this is out patient.
Transplant: The transplant process (currently only considering transplant with my own cells) is also outpatient. But this is where the C word fits in it's true form. Prior to the transplant they will hit me with melafan (sp?) at an extremely high dosage that will essentially eliminate everything left in my body remotely resembling myeloma. On day one they will transplant with my own cells (which we had previously harvested and placed gingerly in the freezer's ice cube trays). I believe this process will be a few days for the transplant and about 10-14 days for my body to be back up and functional. Add about a month and half more and I should have a full head (of hopefully not red) hair to boot! Again, all of this is out patient
The benefit of the transplant, versus continuing on the cocktail and keeping a level of remission, is that the cocktail will only work for so long (like having just the right number of tequila shots where you've drunk yourself sober!) The transplant should give me the ability to go off the drugs completely and live some semblance of a normal life. We will always have to watch for it to recur but the potential is that I shouldn't have to worry about it for 1-3 years. We may be looking at a potential tandem transplant (a second transplant happening w/in one year of the first) but only if something is recurring. So all said in done, I could be in that position in about 6 months. Unfortunately, I don't know if that means I can have rugby in the spring (next spring) but we'll play that by ear.
"Alo" transplants - my brother is really the only one that has a reasonable chance for a match (and it's only 25%). However, some of you have mentioned potentially being tested and there is a registry (I'll have to get a link) and you're more than welcome to put yourself on the list. The chances of it matching with me are about as good as my scoring a try (in any season!) but there may be someone else out there that you don't know that could benefit - I'll leave that decision to you!
So that's all I have for you now - I should be getting my Revlamid soon and then the fun starts, expect it to start in the next three weeks. I've still limited my alcohol intake to the requisite 2-3 units per week (and boy they taste wonderful!). I can't wait till touch rugby starts and till I can have four beers in a row!
Thanks for reading!

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