Monday, August 03, 2009


The visit with Dr. Rifkin today was good, only in that it didn't bring any bad news. The prednisone seems to be helping a bit in keeping the white cells and red cells above critical levels. So, no neupogyn shots and no transfusions this week. Platelets are at 97 (normal being 150). They plummeted to 10 when I first arrived in Denver in May. IGGs have moved from 4500, to 4300, to 4000, to 3850. No significant movement, but holding steady in a downward fashion, which is better than the other way. Rifkin thinks we might see a bit more downward movement in the IGGs in the next 2 to 4 weeks while on the steroids. Then, depending on how I'm doing, he may start me on some thalidomide to see if we can hit those cancer levels. Slow and steady. After 3 weeks on the steroids I can already feel the "muscle wasting effect." The little bit of strength I regained in physical therapy is quickly evaporating. Frustrating. My energy levels are also dropping as I ride the ups and downs of one day on, one day off with the steroids. And then there is the weight gain. Which is good, except that the weight gain is unmanageable. Last go round I put on 50 pounds! And Susan told me I look so good at 170. Oh well, luckily I didn't throw out any of those XXL sizes I bought 3 years ago.

So far no contact from my doctor in Little Rock, despite numerous requests for a phone consult with Rifkin. Go figure. I'll withhold further comment for now.

Have a good week everyone. We're still tickin' along, one foot in front of the other, one day at a time.


Ingrid said...

Hi Dan,

I would say, although this post reads kind of a little tired or frustrated, the numbers sound pretty good.
And referrring to Dr. B., who knows, maybe he is simply on holiday, which on the other hand would be pretty comprehensive, don't you think.
I mean, when do Doctors like R. or B. get a holiday, being involved in such important health issues. They for sure deserve it to get a rest.
So don't worry, he will contact Dr. R. soon.
And while you gain weight again, maybe a little sunshine is, that you gain it at home, surrounded by all your friends, not considering, that the weight gain is the last problem you have now.

Hey, I love you and Susan, and send you a biiiiiiiiiiig hug !!!


Nick said...

Dan -

You and Susan and your daughters are never far from our thoughts. I am very glad to hear that your counts are stabilizing -- Neupogyn, as you may recall, suppresses platelet recovery so hopefully now that you no longer need that, the platelets will start to move up more rapidly.

I wouldn't be so quick to write off you declining IgG, by the way -- down about 25% on the 'roids alone sounds like good progress! I am hopeful that after a couple more weeks of this, your counts will be further improved and you can tolerate the Thalidomide that can be used to bring the cancer markers down further.

I think it would be very unlike BB to not return Rifkin's calls. If nothing else, he'll want to argue with him! :) I'm sure they will eventually compare notes, but getting a "control the disease" guy (like Rifkin or my original hematologist) on the line with the biggest "eradicate the disease" guy in the world could be like crossing the streams in Ghostbusters! Brace yourself! :)

Please let us know if we can help in any way -- you guys remain in our thoughts and prayers.


Nick and Jill van Dyk

sigun said...

Dear Dan,

What a welcome comment: 'stable'. Keep it that way! Bises, Sigun.

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