Saturday, July 24, 2010

A Long Overdue Update

It has been weeks since my last post.  All is going well.  I had two back-to-back visits at Dana Farber and Mt Sinai (formerly St Vincent's) and bloodwork only at DFCI.  Bottom line, my numbers are in line and I've been able to back down on some of my meds.  I don't want to repeat myself (and haven't previewed my prior post so am not sure if I am repeating myself but here goes), but I've dropped the Nortriptylene altogether as well as some of the other supplements (alpha lipoic, etc.)  I've reduced the Rev from 25mg to 15mg.

I can start to feel the Nortrip wearing off now.  I've been able to get up and actually do some exercises.  Not as much as I'd like but at least I'm doing them.  I'm still around 206 and want to get back down to 189 if possible.  Additionally, I'm only seeing the doc every three months but still doing bloodwork every month (to get the Rev scrip).  Also, I have a very special friend at the hospital which is a huge advantage.  One of the NP's from StV's used to be in myeloma and moved to solid tumors.  When the change took place she followed Dr J and is back in MM and is helping me out LOADS!

So, as promised, I'm going to try and post some before and after pictures (yes, the hair is all back, it's come back full force, and a bit more curly than I would have wanted.  I'll also try to post a few pics w/ a relatively mild Rev reaction.

So this pic is the "day of".  In the shower, everything started falling out.  Actually, not everything, it really only fell out in two strips off center of the skull.  So I had hair around the ears and on the top (mohawk) but nothing in between.  It was a really bad Bozo look!  After consultation with the wife, I took out the shears and got it down to what you see here.

After a few days, it ALL fell out.  This was not caused by any clipper or razor - this was a "Trim By Cytoxan"!  I took this with my iPhone for posterity.


When I went back on the Rev (the first maintenance cycle) I had a really bad reaction.  This example here is either the second or third cycle.  I have the reaction around the 4th or 5th day of the cycle.  Notice the red patches on the side of the scalp.  If you look closely, you'll see red on the inside of the eye socket, that's the first place it starts.  On my first cycle I was triple this with my eyelids and eye socket swollen along with the skin of my scalp, over the ears, also swollen.  I looked like a really bad Frankenstein!


I'm now back to full growth and, today, actually had to go to the barber as I could no longer handle the trim with my clippers (without it looking like I had handled the trim with my clippers!)

I head to Mt Sinai on Tuesday to have bloodwork and get my numbers.  They're still a bit crazed there with setting things up but at least I'll know where I stand this month.  Thanks to everyone reading this and, as always, any questions, please let me know!

Thursday, July 1, 2010

What's next?

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!