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.
Have you ruled out UAMS altogether?
Hope you keep doing well and find peace in all of the hard decisions.
Mom has SCT #2 next week.
I had my SCT 3 years ago and have had no treatment at all since then. The transplant was not too bad to deal with. As a matter of fact I am seeing the Doc tomorrow for another bone marrow biopsy to go with the free light chain assay they did earlier this week to decide if things are creeping up after 3 years. If so they want to go directly to another SCT. The first SCT bought me 3 years of event free living and I guess if another did the same it would be worth it. Wish you the best with whatever you decide. The only thing I know for sure is that this disease varies so much from case to case it hard at times to make sense of it all.
By the way, I really enjoy your blog.
Have you considered calling your Mayo doctor for a second opinion on this single issue? They do call back.
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