Countdown

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Tomorrow is my last Velcade & Doxil before SCT. I’ll have two more doses of Velcade alone next week. After that, I’ll just have tests (MUGA, BMB, EKG, etc).

I’m glad to be nearly done with the Velcade/Doxil regimen. There’s some painful neuropathy developing in my legs and feet. I don’t think I could do much more. Someone once told me they’d be surprised if I got through 8 cycles of Velcade. I did, but I missed a few doses for various reasons. I know what she meant though. It’s better than steroids, but I’m all rashy, I’m hurting from the neuropathy and the skin is peeling off my hands.

I don’t think I can stay awake any longer. More tomorrow!

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My Duke Visit

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The people at Duke were wonderful. I saw nurses, 2 doctors, a social worker and someone who went over all the insurance information with me. My blood was drawn and I was scheduled for a return visit after I complete one more cycle of Velcade and Doxil, which I started Tuesday.

Dr. Long says that I should start the process at the end of August and be finished by the end of September. They will collect more stem cells for the transplant and let the cells stay on ice at Wake Forest as a backup for later on. I won’t have to have more chemo for mobilization. We’ll use 2 types of injections for a week beforehand, then I’ll have a catheter surgically implanted for the collection and chemo/transplant a week later. There are no specific dates yet. I need to have all the usual tests to make sure I can safely get through it, which I’m sure is no problem.

My sister, Rachel, will be coming to Durham to help me through this for a couple of weeks. That’s a huge deal, because it means being away from family and running all the errands. I’ll need to be taken to the clinic each day to have drugs and transfusions as needed.

Since the procedure is outpatient, I am looking for a Reiki Master and someone to help with visualization during this time to help me get through it and possibly recover more quickly. I’m hoping they’ll be able to come to the apartment and I won’t have to go out for this.

I’m hoping that J will be able to do hers about the same time, so we can get through it together. I don’t know if many friends schedule theirs for the same time, so this might be a novelty.

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Duke tomorrow

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Someone from Duke called me late Friday to tell me that Dr. Long, of the Adult Bone Marrow and Stem Cell Transplant (ABMT) Program, could see me Monday morning. That was fast. There are three questions I have for him.

  1. Will they use stem cells that were harvested someplace else when the bone marrow plasma cells were at 30%
  2. If I have to re-harvest, do I have to have chemo again for mobilization?
  3. Do they require an outpatient procedure or is inpatient also an option?

I’m sure I’ll think of others before I get there.

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Doxil side effects

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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!

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2007 US Womens Open

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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.

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Stem Cell Transplant

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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.

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FISH vs Cytogenetics

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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.

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