My mother is on a clinical trial of selinexor and dex. We should know more on Tuesday about how it's working. What we do know now is that her hemoglobin has remained stubbornly low at 6.3.
Her doctor doesn't want to give her a transfusion because she doesn't want her marrow to become dependent on that. But Mom is getting shortness of breath and is very tired from the anemia.
Does anyone have experience with this? How long should it take until the hemoglobin goes up? Would a transfusion really be harmful?
(And obviously in the back of my mind, I am hoping this anemia doesn't mean the treatment isn't working.)
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Holding off on transfusions for anemia?
Good morning BeatM,
My wife's hemoglobin bottomed out at about 7.5 in initial induction, and then started moving up as the myeloma burden was knocked down by the Revlimid, Velcade, dexamethasone (RVD). The doctors were watching it closely, and said at that center that they would transfuse at about or below 7.0. So you are correct to be watching it and concerned.
I have no reason or basis to contradict your doctor, but I do think that he (she) probably feels your mother is near that point. With her ASCT while in the hospital, she needed 2 or 3 units (also platelets). I know that doctors do not want to unnecessarily transfuse, but when it's needed, it's routinely done at the major experienced centers.
Good luck.
My wife's hemoglobin bottomed out at about 7.5 in initial induction, and then started moving up as the myeloma burden was knocked down by the Revlimid, Velcade, dexamethasone (RVD). The doctors were watching it closely, and said at that center that they would transfuse at about or below 7.0. So you are correct to be watching it and concerned.
I have no reason or basis to contradict your doctor, but I do think that he (she) probably feels your mother is near that point. With her ASCT while in the hospital, she needed 2 or 3 units (also platelets). I know that doctors do not want to unnecessarily transfuse, but when it's needed, it's routinely done at the major experienced centers.
Good luck.
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JPC - Name: JPC
Re: Holding off on transfusions for anemia?
Thanks JPC!
Selinexor is supposed to be very hard on platelet counts. Mom's have actually been ok in this first round, only falling to 156 at the end of the third week (so on the bottom end of normal). And so far, it has left her white blood counts unscathed. It's the hemoglobin that has been an unexpected issue. It's lower than it has ever been now, even than during her two auto stem cell transplants.
I understand that Mom's doctor wants her hemoglobin to rise on its own. But we haven't been able to get a sense of when that is expected. It's very frustrating, especially since I think that if she wasn't so anemic, she might be more active and build strength.
Selinexor is supposed to be very hard on platelet counts. Mom's have actually been ok in this first round, only falling to 156 at the end of the third week (so on the bottom end of normal). And so far, it has left her white blood counts unscathed. It's the hemoglobin that has been an unexpected issue. It's lower than it has ever been now, even than during her two auto stem cell transplants.
I understand that Mom's doctor wants her hemoglobin to rise on its own. But we haven't been able to get a sense of when that is expected. It's very frustrating, especially since I think that if she wasn't so anemic, she might be more active and build strength.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
3 posts
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