How common is it for someone with smoldering multiple myeloma to have a high platelet count?
I have smoldering myeloma and my platelet count is currently 730. I am the first patient my doctor has seen with high platelets and either multiple myeloma or smoldering multiple myeloma. Is it really that rare?
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jimluby - Name: jim l
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2015
- Age at diagnosis: 69
Re: Smoldering multiple myeloma with high platelet count
Hi Jim,
I think I only remember coming across one person on this forum with thrombocytosis (high platelet counts) – see this forum discussion.
I'm not a doctor, but I think the key thing your doctor needs to do is to determine if this is "essential thrombocythemia" due to your smoldering multiple myeloma, or if this is "reactive thrombocythemia" due to something such as an infection. My understanding from researching the combination of "thrombocytosis" and "myeloma" is that the combination with is extremely rare.
I think I only remember coming across one person on this forum with thrombocytosis (high platelet counts) – see this forum discussion.
I'm not a doctor, but I think the key thing your doctor needs to do is to determine if this is "essential thrombocythemia" due to your smoldering multiple myeloma, or if this is "reactive thrombocythemia" due to something such as an infection. My understanding from researching the combination of "thrombocytosis" and "myeloma" is that the combination with is extremely rare.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering multiple myeloma with high platelet count
Multibilly, rare indeed. My platelet count declined while I was being treated with Darzalex, as did the monoclonal protein level. Both are trending up again.
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jimluby - Name: jim l
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2015
- Age at diagnosis: 69
Re: Smoldering multiple myeloma with high platelet count
My smoldering multiple myeloma was discovered after a blood test, which I insisted that my regular doctor give me due to an abnormal bout of fatigue. I have always been borderline anemic, and the blood test confirmed that as well as a new issue, a high level of platelets, 930 at that time.
I was referred to a hematologist, who, 3 years later, is still not sure why my platelets are high. It took 10 months of testing before the hematologist figured out I had smoldering multiple myeloma. The platelets stay between 840-940..with the highest going just over 1000. I have been smoldering with high platelets for 3 years now.
So I'm also interested in how common this is, and what it might mean going forward.
Thanks!
I was referred to a hematologist, who, 3 years later, is still not sure why my platelets are high. It took 10 months of testing before the hematologist figured out I had smoldering multiple myeloma. The platelets stay between 840-940..with the highest going just over 1000. I have been smoldering with high platelets for 3 years now.
So I'm also interested in how common this is, and what it might mean going forward.
Thanks!
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