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 :)
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:
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:
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.
212-696-4455 ext. 111
I had my first day of tests at the Mayo Clinic. First, let me say that I’m awe struck by the facility itself. Everywhere I’ve been has been clean and well-run. There’s some real architectural beauty there as well. It’s like the Disneyland of healthcare. I mean it. It’s really nice! I don’t want to name any names, but I’ve been in other places in which all I could think about was how icky and gross they are. You know what I mean. Those places where you’re scared to sit in the chairs in the waiting rooms because of those dark stains on the upholstery. Not to mention the big stains of questionable origin on the carpet. I usually feel contaminated when I’m there. This wasn’t the case at the Mayo Clinic. I still took my usual precautions — trying not to touch anything and washing my hands often.
I know I said the accommodations here are nice, too, but I’m retracting that statement. It’s clean and quiet here, but the room a/c has been broken, and I feel like I have a room in Hades. The maintenance guys have been here 4 times now, and I think the situation merits a move to a new room. That’s what’s going to happen later today (it’s 2 AM local time).
Back to the day at the clinic. I got there too early, but that was ok. I had to fill out the usual questionnaires, and that took time. I saw the doctor first, and was impressed. Everything everyone has told me about Dr. Hayman is true. She’s very good at her job. I look forward to seeing her again on Friday to discuss test results. After meeting the doctor, the tests were ordered and off I went. I had blood drawn and deposited a urine sample in one of the stations. It sounds weird, but there are specimen sample stations around the place. when you have the opportunity, you leave yours (inside a sealed container and plastic envelope, of course) in a container. You can find the locations of the containers on the maps which are visible at various points around the buildings. Oh! There are either employees or volunteers who seem to appear out of nowhere just at the moment you need them. If you’re standing there, looking confused, someone will ask you if you need help. If confusion is your normal state, you might find that annoying, but I think it’s quite helpful.
After I had the blood and urine taken care of, I went to pick up my jug. You all know what that is. We’re subjected to a 24 hour urine collection process, which is my least favorite activity, after bone marrow biopsies. I also had x-rays and an EKG and the bone marrow biopsy, which was unremarkable. Nothing like my very first one (“hold on and try not to move.”) at Duke. It was over pretty quickly and I was on my way. Today I have some other imaging study of some kind.
I’ll report on my meeting with Dr. Hayman on Friday.
I’m here in Rochester, MN, at the home of the Mayo Clinic. I arrived today in preparation for my appointments starting tomorrow morning at 8:05. I’m staying at the Marriott Springhill Suite, which is pretty nice. It’s nice being in the midwest. People are friendly and the drivers are extremely sane here.
I’ll post more about my experiences as they happen. I’m not really sure what’s going to happen over the next few days. Probably tests and x-rays. I’m sure there’s a bone marrow biopsy in my immediate future.