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!

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