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.
Hi Beth:
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.
g
Dear Beth,
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.
Mike
Beth,
Have you considered calling your Mayo doctor for a second opinion on this single issue? They do call back.
Don