Tuesday, March 15, 2011

Thought I'd let you know I'm not sick! :)

Sorry to have been so busy!!!

I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients.  And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.

Generally, everything is good.  I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down.  I felt like I had food in my stomach for three days.  It was pretty awful.    But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all.  I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.

Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex.  However, everything is steady as she goes.

Including the weight, sadly.  I dropped about 20 pounds but have been holding fairly steady.  Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food.  I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through.  We shall see.

Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!


  1. Glad to see you back posting and thanks for the update....

    Keep in touch.

  2. I think all we care about is that you are regular in the other way... but it is good to hear how well you are doing, including the managing of the weight... thanks for helping the newbies get the information they need. We have all been there!

  3. Thanks for the good news Nick. I'm glad to hear things are still going as planned.

  4. Glad to hear your ok. I met a 5 year CR patient in Orlando from MIRT and he had just relapsed. He said he was one of the unlucky 10%. Sure made me count my blessings. Gary

  5. Good to hear from you, Nick. Glad that you are well. I'm in LR - yesterday for testing, today for resting, Friday for the Dr.'s appt. My only concern is that my GFR is low (53) and my creatinine is high (1.3). Haven't had any kidney problems present before, we'll see what the good docs have to say.

    The girls are with me, shopping, movies, having fun. This evening we're dining with a mom and her daughter from nearby Conway, Ar. The girl was my Katie's crib mate in China before they were both adopted in 1998.

    Hang tough & Happy Spring! Sean

    PS - don't even want to talk about the weight gain issue! :(