Actually, having typed that, I realized it could quickly be misunderstood as a statement of frustration. That is certainly not the case here. By “what’s next” I simply mean to provide an update to what seems to be my less frequent postings. As has been lately the case, I offer apologies to those “avid” followers, again, as there hasn’t been a recent update to my blog. The days just seem to escape like a poorly monitored, greased swine! (going for visuals tonight!)
Having taken a long weekend in Boston (at a beautiful home with gorgeous views and company that too frequently tip the bottle), I had my visit at DFCI which was promptly followed by a visit at my ‘new’, New York digs: Mt Sinai (I believe the correct name is the Ruttenberg Cancer Center but I will confirm that in a later post). Bottom line, my numbers remain where they should be. IGA is normal, IGG/IGM are low but approaching normal. WBC, Hemo and Hemato are normal where RBC is just below normal. TotProtein, Globulin and Calcium levels are all good. I had no m-spike so DFCI now considers me to be in near CR (complete remission) as well. Having met w/ Dr Jagannath at Mt Sinai after returning from Boston and DFCI, the following are the changes going forward:
- we will drop the Revlimid from 25mg down to 15mg, still 21 days on, 7 days off. I anticipate this being followed through end of this year while dropping to 10mg (21/7) beginning in 2011.
- we will drop the Dex altogether (yipee! perhaps this means an end to the c-word?)
- we will drop the Nortriptylene as well while keeping with the Lyrica at 200mg/day for the time being. I’m anxious to see where this leaves my feet.
- we will drop the Accyclovir as that is really utilized in conjunction with the Velcade and unnecessary in my current state.
- there is still a question with respect to the Zometa – DFCI is recommending once per month where MtS is saying not only is that not recommended but something they would avoid. Their belief is that this only raises other potential issues due to the compromises it could pose on the bones itself where I have nothing showing any concerns with my bones or lytic lesions that would demonstrate a need for this active a routine. I’ve not yet done enough research to say either way so I’ll let the two of them chat it out.
- I’ve also opted to drop out of the other daily meds that I don’t believe are having an impact: alpha lipoic acid, acetyl l-carnitine, etc.
So my daily regimen is essentially Rev for 21 days along with Lyrica (100mg 2x), BabyAspirin, VitC, VitD, VitB12 (500mcgr – highly recommend this one for an energy boost to anyone taking some of these other meds), FlaxseedOil, sennacol (during Rev days) and finally, FishOil (highly recommended from the pill poppers in Boston!) I now need to get myself to bed at a reasonable time and start getting up and back to my exercises. I was also chastised for not having exercised, which I hope to correct in the very near future. But part of that means getting to bed at a reasonable time (did I just say that twice, probably because it’s 23:26 and I should have been in bed hours ago!)
I’ll write more re; where I stand and also post some before/after hair pix. I also took some pix of my most recent reaction to the Rev. It wasn’t bad but hopefully someone new to the regimen will have a sense of relief that it’s not long lasting and Zyrtec will take care of it! Thanks to Beth Morgan for sending me pix of how her eyes reacted to the Rev, I’ll try to think of this as I move forward. I’ll also put something together re; long term thought process as I’ve spoken to both docs re; that issue and have some sense of what to expect. But for now, I need to get to bed!
Thanks for reading and I’ll talk w/ everyone soon!