Sunday, February 23, 2014

Onward through the fog . . .

Well, I have been through over a month now of the Velcade/Dexamethasone regimen, and seem to be surviving it alright.  It's an interesting pattern, the Dex is a pretty powerful steroid and has stimulant properties and I didn't think I'd be able to handle that at first, since I am very caffeine sensitive.  But I seem to be able to sleep alright on it, whereas a lot of people don't.  For which I am very grateful.  But it sure turns me into a hyperactive, emotional mess the next day.  Everything is just way more intense and I rush around like a mad person from thing to thing, accomplishing very little.  Then by Day 3, like the werewolf reverting back to a human being in those old horror films, normal-ness begins to take over again, the fangs and fur melt away quickly.  So I'm having about four days of normal functioning and three days of roller coaster ride, but it's a small price to pay to wipe this myeloma out of my system.

And it does seem to be working according to the Dr.  My numbers are responding, there was a 20% drop in the M-spike in the first month alone, which he considers a good response, so I'm pleased.  I sometimes feel like I've entered a strange, alternate universe with a small light at the end of the tunnel, but at least there's a light.  I sat next to one poor fellow (much younger than me) in the chemo room the other day who had had every single combination of every myeloma drug and none of them had worked on him.  I felt so bad for him, and equally grateful that my situation is not that dire, and hopefully will not be.

Most people really don't have a clue about diet or supplements, though, and I do think a lot of the things I do in that regard are helping.  Neuropathy is one of the main side effects of the Velcade, and I did have a couple of very nasty experiences with it at the beginning.  So bad that I was afraid I wouldn't be able to continue, as has happened with others.  So I decided to go on the attack against that as I didn't want it to derail the whole regimen; I've dealt with peripheral neuropathy for a good 15 years now (no doubt caused by the growing myeloma situation, without my knowing it), and have a number of little things I can do to make it better, which seem to be working.  Doubling up on B Vitamins on the Velcade days is one of them, and doing a hot foot soak with epsom salts and hydrogen peroxide that very night is another (those pull toxins out).  Those two things alone have made the neuropathy no worse than usual, or at least very tolerable.  And of course staying strictly gluten free is the number one thing to control neuropathy in my case, if anyone reading this has this problem.  Without that, it would be hell.

Okay, that's probably way TMI, so that's enough for now.  Onward through the fog, as I like to say . . .

1 comment:

  1. Not TMI at all Joy! Thanks for the update. Glad you are using a combination of resources.