Hi Terry,
Thanks for your good wishes. I don't know whether his myeloma numbers are going up or down after transplant because this is the first time they've run those tests since transplant. They didn't even mention they were going to do those tests or why; I only happened to see the results when I was checking the online portal to see if my husband's anemia had gotten worse, since he was feeling more fatigued.
We have a meeting with his main specialist later this week, so hopefully he will have some sort of ideas or information even if not all results are back.
Forums
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
Hi Ari,
Did you ever find out what was causing the neutrophilia?
Did you ever find out what was causing the neutrophilia?
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Finally heading to transplant
Thanks for asking. They don't have any more ideas and I suppose it may remain forever undiagnosed. Either that, or they'll give it a name and recognize it as a newly discovered disorder.
Mayo did further genetic testing searching for mutations associated with any class of blood cancer, but neither his symptoms, nor the physical appearance of the cells, nor genetic tests match any cancer on record or any manifestation they've ever seen associated with myeloma. They don't think it's the myeloma, though, because the rise and fall of neutrophils is not in tandem with the rise and fall in M-spike or other multiple myeloma markers.
Right now his neutrophil count is hovering at 2-3 times the maximum considered normal, which is drastically better than it had been, so they are concentrating on getting the M-spike down. I think I mentioned in another thread that they called off the second auto transplant because he relapsed so fast that they said it wasn't worth it to do another, so he's doing the Darzalex, Revlimid, and dexamethasone regimen. His M-spike went down a bit at first, and it now has been stubbornly holding steady for three months, but that's better than creeping up, so we'll have to be content with that for now. I've heard sometimes it plateaus before going down further, so that's what I'm hoping for.
Mayo did further genetic testing searching for mutations associated with any class of blood cancer, but neither his symptoms, nor the physical appearance of the cells, nor genetic tests match any cancer on record or any manifestation they've ever seen associated with myeloma. They don't think it's the myeloma, though, because the rise and fall of neutrophils is not in tandem with the rise and fall in M-spike or other multiple myeloma markers.
Right now his neutrophil count is hovering at 2-3 times the maximum considered normal, which is drastically better than it had been, so they are concentrating on getting the M-spike down. I think I mentioned in another thread that they called off the second auto transplant because he relapsed so fast that they said it wasn't worth it to do another, so he's doing the Darzalex, Revlimid, and dexamethasone regimen. His M-spike went down a bit at first, and it now has been stubbornly holding steady for three months, but that's better than creeping up, so we'll have to be content with that for now. I've heard sometimes it plateaus before going down further, so that's what I'm hoping for.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
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