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Author: Beth
I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.
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.
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
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:
INTERPRETATIONS
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.
I’ve been on Velcade & Doxil since January now, so it’s time for another update. There have been a few cycles during which I missed a dose because of a rash, shingles and a trip to Mayo.
I’ve tolerated Velcade & Doxil quite well, with the exception of the skin problems. I also have a problem with the skin on my hands, which we think comes from the Doxil (HFS). Last Friday when I had treatment, I tried a suggestion from on of my doctors. During the infusion, I held an ice pack in each hand. They call this regional cooling, and more information can be found here:
http://doxil.com/optimize_treatment/managing_side_effect.jsp
What happens to me is that the skin on my hands splits open and the result is soreness and ever-present bandaids.
During my treatment, I receive some IV dex and benadryl to help lessen the hives (rash) that appeared after my second cycle. Since I started having the premeds, the hives have been practically non-existent.
I also have Anzemet, an anti-nausea drug. I’m not really sure that I need it, but I don’t want to find out. I think the Anzemet may be responsible for a headache I get the night of treatment. When there are so many things being pumped into your vein, there’s no way to be sure.
So far, the drug combo has worked for me. My IgA and m-spikes are still not in the normal range, but my bone marrow biopsy indicates that the % of plasma cells is down to 6.2%, and it was 30% last fall after Rev/dex (20% BEFORE Rev/dex).
I plan on staying with this regimen while I think about SCT and other things, and hope that it continues to work (even slowly) while I ponder.
I posted a message on the mailing lists, looking for list members who live in the New York City area recently. The purpose of my inquiry was to pass on some information about a Focus Group that’s being arranged by Advanced Focus Research.
They are looking for MM patients and caregivers to attend. There are a few pre-qualifying questions they need to ask, so I am including some contact information below.
There are 2 compelling reasons to participate: 1) If you qualify, and you participate, they will pay you $150. 2) They will donate $100 to the IMF for every person who participates.
It takes place on Tuesday, June 5th at 11:45am, 5:45pm, or 7:45pm.
Please contact Melissa Goldstein, and please make sure to tell her you heard about it here from Beth so the IMF will get their donation.
www.advancedfocus.com
212-696-4455 ext. 111
I just found this on eBay. The Silicon Valley Chapter of the LLS is trying to raise money by auctioning several nice items. Read more about it here.