Thursday, March 25, 2010

I'm alive and (reasonably) well...just been buried at work! So an overdue update!

Hey there folks.  Sorry to vanish on you for a bit -- I've been working 18 hours a day, 7 days a week basically for the last two weeks.

Medical highlights:

* I got over my chest-cold about two weeks ago.  I also got rid of my thrush.  I subsequently saw Dr. GD who said that he would NOT recommend I get IVIG, because my IgG at around 530 isn't low enough to benefit from it.  He sent off a letter to BB asking him if he was sure I should get it.  In the meantime, Dr. RZ (a colleague of my primary care physician) also said it wouldn't do any good at my current IgG level.  So no IVIG after all that.

* May have been the wrong choice, and I am now sick again.  This SUCKS.  This is chest cold number five since September.

* I am bruising like a grape from low platelets.  My platelets hover between 100 and 115 these days, with slight improvement when I'm off the Revlimid for a week.  My white count is probably not going to see the sunny side of 3.0 again unless I dose-reduce the Revlimid.  It's at 2.9 now, and that's not good given the need to get rid of these damn colds.  I am armed with the strong antibiotic they gave me before (Augmentin) and am taking that as well as Tamiflu.  We'll see what happens.

* I got a intramuscular shot of testosterone from a new guy, Dr. LB, who unlike the other urologist said intramuscular shots were highly effective and he gives them all the time.  This should help with muscle wasting, energy and mojo.  We'll see if I turn into Barry Bonds.

* I have been blessedly free from the horrible cramps-in-the-middle-of-the-night, more or less, since I started that supplement with magnesium and zinc.  I did get two horrible ones this past Tuesday, thought.  So maybe Velcade + Dex + Rev > Magnesium supplements.  The only thing I might add to the cocktail would be potassium, so perhaps some raisins and a potato on Tuesdays might come in handy.

* I will be heading back to Arkansas in May for the next round of follow-up tests, and to see if I can get a balloon kyphoplasty to restore some height by "poofing up" the two mangled vertebrae.  As for the test themselves, we'll be looking for continued healing of my bones.  There was a lot of progress made from September to January, and I had one additional course of Zometa.  I'm not sure if it will be this time, or next time, but sooner or later they will be healed and I will have, God willing, MRI Complete Remission which is a key next step in ensuring that I'm cured.

I'm sure I'm forgetting something, but I've got to jump back on this conference call.  More to come, with a resumption of my long-overdue-charts, soon!  Along with, perhaps, some kind of rendering of my backside (complete with marks for bone marrow biopsies) in response to a request from a fellow MM sufferer.  :)


  1. Glad you posted...I was wondering... Sorry it took so long to comment, we went to Tahoe and spent a few days at the condo. No internet there. Kinda a nice break. Hey, work on that cold :-( I'm sure the 18 hour days aren't helping things! Keep us informed...

  2. Whenever your schedule gets back to semi-normal, let's have dinner.

  3. I am just reading your blog for the first time, my husband Harvey is also a mm patient at Little Rock. Just returned home last week from stem cell harvesting and to go back in 3 weeks for testing again and to start Revlimid/dex. He was able to harvest 19 million cells with chemo. Little Rock is a wonderful Myeloma hospital, just wish that it was not so far from home., which is NE Tenn.

    Darlene Jessee

  4. I read your how blog through twice yesterday and today. Thank you for all of the time you have put into this. You are right about the info on MM from google. It had me in tears last night. I am 43 and suffered a spontaneous complete fracture of my femur requiring extensive surgery. I have also have pretty severe osteoporosis with previous verterbral fx on bone scan. Docs are just getting around to testing for MM. awaiting results. ugh. again thank you!