Month: June 2007

Doxil side effects

skinproblem.jpgThis is what Doxil does to my hands. They recover some during my time off. Sometimes there’s bleeding, and it usually hurts (but just when I bend my fingers). Someone recommended that I try New Skin Liquid Bandage, which I have. I must say, it’s smelly! Plus, when I paint it on, it stings.

In addition to the HFS (hand-foot syndrome), I also have some stomatitis. It’s not too bad, and doesn’t last very long (4 days per cycle, maybe). However, a few days ago, my tongue was actually bleeding. On the worst days, I sort of want to just keep on eating ice cream at a steady rate. I tried toast for breakfast one day, and it felt like I was chewing on razor blades. That’s an exaggeration, yes.
Here’s a link to the Doxil site’s list of possible side effects for your reading enjoyment.

No matter what this stuff does to me, it’s still better than dex!

2007 US Womens Open

The 2007 US Womens Open is being played in Southern Pines this week. I don’t know anything about golf, and am not a sports fan. I believe that if you like a sport or activity, you should do it, rather than watching other people do it. I’m baffled by the attraction to sporting events, and think it’s one of the biggest wastes of time and money on the planet. Imagine what would happen if we, as a society, spent all that money on education or medical research?

What was I going to write about? I can’t remember now.

Stem Cell Transplant

I saw Dr. Orlowski yesterday, and his advice to me was not to put off the stem cell transplant any longer. I understand the reasons for this, but it’s difficult to overcome my fears. I planned on having the SCT when the current treatment (Velcade and Doxil) no longer worked for me, but he says I should do it this summer. I was surprisingly calm about it yesterday, but last night I had weird nightmares about SCT and today I’m extremely anxious.

UNC won’t use the stem cells I collected at WFUBMC, so my other choices (if I want to stay in NC) are to go back to WFUBMC or go to Duke. About a month ago, I emailed someone at WFUBMC and asked a few questions, but never got a response. I had some communication problems with them last year, and it was kind of off-putting. I called Duke a little while ago to see if I can get an appointment with Dr. Long.

Dr. Orlowski thought it would work out that the SCT would be scheduled for September if I got on track right away. These things take a little time to get under way.

It seems the Velcade & Doxil is still working well though. My IgA was 490 mg/dL yesterday, which is about the lowest it’s ever been. It still has a little way to go before it’s in the normal range. I’ll probably find out what my m-spike is in a day or so. I’ll just stay with this treatment until the SCT.

FISH vs Cytogenetics

Dr. Hayman’s assistant called me today to answer my questions about the bone marrow biopsy. The results from the FISH sounded scary to me, but she let me know that I had normal karyotypes in the cytogentics and that’s what was more important. She said that it had no effect on my treatment plans. (What plans?) I’ll be seeing Dr. Orlowski on Tuesday, so I’ll get more details from him then.


Here’s a response from Dr. Fonseca regarding the paragraph from my BMB report below. I sure do feel better now.
There is little information regarding the tetraploidy as prognostic marker. The fact that you have avoided SCT for 4 years already is in it of itself a very good prognostic sign :)

Thank you,

Rafael Fonseca MD

Abnormal tetraploid clone?

I just got the full report from a bone marrow biopsy that was done last month at Mayo. There’s a new thing I’ve never seen before, so I’d like to know what your experiences are with this. Here’s the paragraph I’m concerned about:

The result is abnormal and indicates a plasma cell clone with an IGH gene rearrangement and monosomy 13. In addition, approximately 50% of plasma cells had a tetraploid version of this clone. An abnormal tetraploid clone is reportedly associated with an unfavorable prognosis in multiple myeloma.
Reference: Fonseca et al., Blood 99:3735-3741, 2002.

I’m seeing Dr. Orlowski next week, and will ask about this, but I’m checking to see if anyone has personal experience with this, and can offer an explanation of what it means in layman’s terms.