Category: General

I have an appointment with one of the BMT doctors at UNC on August 19th. We’ll talk about all that’s involved. Does anyone have any suggestions for questions I should ask? UNC does have a nice site they use to explain the process: http://www.mysct.org/

The thing that scares me the most is the high dose chemo. I seem to be sensitive to drugs, and (I think I wrote about this before) my primary MM doc says that he has concerns about this. I’ll naturally bring this up with the BMT doc when I see him.

I am always interested in learning about the experiences of others with their stem cell transplants. If you can relay your story, and would like to share with others, I made a special section on www.mmsupport.net called “Stem Cell Stories.”

This makes me laugh every time I read it!

“They never stop thinking about new ways to harm our country and our people, and neither do we.”
George W. Bush
August 5, 2004
Read more:
http://www.thesmokinggun.com/archive/0805042bush1.html

The last several months, I’ve been on 60mg dex per week, which is 260mg per month. I changed my schedule to see if I could tolerate it better. This month I’m taking 40mg on the 1st and 2nd, then 20 on the 3rd & 4th. Then I’ll have a break and take 40 on the 15th & 16th, and 20 on the 17th & 18th. I’ll let you know how it goes.

Thanks to a recommendation from a friend, I got a prescription for Prevacid (30 mg daily) and it has really put a huge dent in my dex indigestion! I haven’t suffered at all today, thank goodness.

Sometimes I search on Ebay for charity auctions that will benefit MM research. If there’s something I want to get, and some of the money will go to fight MM, I’m lucky to have found it! Sometimes I will also just write to the seller to say thank you.

Today I did such a search and found this item. Diana Krall tickets. You know what bothers me about this? The seller mentions that Diana supports the MMRF. The seller used the words in the auction text for what reason? To attract potential buyers. It makes me angry that someone would overinflate the price of some concert tickets and add these words: “Diana Krall is a supporter of the Leukemia/Bone Marrow Transplantation Program/Vancouver Hospital The Multiple Myeloma Research Foundation.”

Does it seem wrong to you?

Dexamethasone gives me horrible indigestion. During this time, ranitidine, alka seltzer and mylanta are my friends. This is a typical side effect of dex. Does anyone have suggestions for dealing with this?

I don’t expect to have to take steroids for a whole lot longer. I’m investigating stem cell transplant as my next treatment. After I had a SCT, I wouldn’t be on any kind of maintenance. What’s the point of going through all that just to take drugs again? I know that some folks hope to extend their remissions, but for me it’s a QOL issue.

When I’m taking dexamethasone, my blood sugar climbs. My endocrinologist doesn’t feel it’s necessary to treat it, because it’s only mildly elevated, as long as I watch what I eat. I have to stay away from starches & sugar. Sometimes that’s not so easy! We had cake at work, and boy did that do a number on my blood glucose.

What I do to lower my blood sugar is exercise. I walk a few miles, and my BG will go down as much as 50 mg/dL. If you’re able, get out and take a brisk walk. It will help. Tonight the first walk early in the evening lowered my BG from 230 to 197. The second walk brought it down to 147. It’s late, and I’m too tired to go again. :)

There’s a clinical trial of a procedure that I would really like to be involved in.

Xcyte Therapies Web Site

http://clinicaltrials.gov/show/NCT00078065

The closest center is in South Carolina. It’s not terribly far — about a three hour drive.