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Multiple myeloma not in blood
Hi. My name is Debi and I have been trying to find anyone who has the same type of symptoms as my husband. He has no signs in his blood or urine tests, He has had a skull tumor(plasmacytoma) and 3 months after radiation another tumor on his spine with bone damage but still nothing in his blood.He had radiation and chemo. The only way the Dr. can watch for recurrance is an mri or cat scan. Nothing shows on skeletal xray. Has anyone out there had this happen? The stem cell dr. said he has only seen a couple cases like this. Thanks and good luck to everyone.
Re: Multiple myeloma not in blood
Hi Debi,
It sounds like your husband may have a kind of myeloma known as nonsecretory myeloma. I think it's also sometimes called oligosecretory myeloma, although there may be subtle differences between the two. In any case, a key aspect of this kind of myeloma is that you can't track it with the usual urine or blood tests. Here is some more information about it,
http://www.myelomabeacon.com/headline/2011/10/21/nonsecretory-multiple-myeloma/
The only part about your husband's situation that seems a bit odd to me is the part about not being able to see the bone tumors on xrays. I don't know if that is common in cases of nonsecretory myeloma or not. Maybe someone else here can comment.
It sounds like your husband may have a kind of myeloma known as nonsecretory myeloma. I think it's also sometimes called oligosecretory myeloma, although there may be subtle differences between the two. In any case, a key aspect of this kind of myeloma is that you can't track it with the usual urine or blood tests. Here is some more information about it,
http://www.myelomabeacon.com/headline/2011/10/21/nonsecretory-multiple-myeloma/
The only part about your husband's situation that seems a bit odd to me is the part about not being able to see the bone tumors on xrays. I don't know if that is common in cases of nonsecretory myeloma or not. Maybe someone else here can comment.
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JimNY
Re: Multiple myeloma not in blood
HI Debi,
I am one of those people who have "nonsecretory" myeloma. The way they were able to tell was by a bone marrow biopsy and a free-light chain test which showed a huge amount of lamba free light chains that are a biproduct of myeloma cells. I don't have any m-spike or anything like that. When I was diagnosed it was because I was having severe shortness of breath (it turned out to be from anemia) so a cat scan was done on my chest and they found lesions on my ribs. A pet scan showed further lesions (plasmacytomas) on my body but I never did have any xrays done. Treatment for me was the same as for others with myeloma. I chose not to have radiation because radiation was only good for getting rid of a particular lesion in a particular area and the chemo treatment did a lot to help the bone lesions and strengthen my bones. I had numerous fractures prior to and during treatment.
Is the doctor a specialist in this kind of cancer? It never hurts to check with someone else if you are not comfortable and make sure to ask a lot of questions.
peri
I am one of those people who have "nonsecretory" myeloma. The way they were able to tell was by a bone marrow biopsy and a free-light chain test which showed a huge amount of lamba free light chains that are a biproduct of myeloma cells. I don't have any m-spike or anything like that. When I was diagnosed it was because I was having severe shortness of breath (it turned out to be from anemia) so a cat scan was done on my chest and they found lesions on my ribs. A pet scan showed further lesions (plasmacytomas) on my body but I never did have any xrays done. Treatment for me was the same as for others with myeloma. I chose not to have radiation because radiation was only good for getting rid of a particular lesion in a particular area and the chemo treatment did a lot to help the bone lesions and strengthen my bones. I had numerous fractures prior to and during treatment.
Is the doctor a specialist in this kind of cancer? It never hurts to check with someone else if you are not comfortable and make sure to ask a lot of questions.
peri
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: Multiple myeloma not in blood
Thank you for giving me some other options to research. We have all the faith in the world in my husband oncologist it's just this is so rare. It's so frustrating because the day after the skull tumor of my husbands work announced they were closing. No insurance makes everything harder but the dr does everything he can. we can't get a medical card because we have life insurance and he's 60 so too young for medicare. We just keep smiling and praying. Thanks again for the leads.
Re: Multiple myeloma not in blood
Dear queen1953,
A whole body PET/CT and serum free light chain testing may be useful additional ways to track his disease, if they have not already been done. I would suggest you discuss this with your physician.
Good luck!
Pete V.
A whole body PET/CT and serum free light chain testing may be useful additional ways to track his disease, if they have not already been done. I would suggest you discuss this with your physician.
Good luck!
Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill
University of North Carolina at Chapel Hill
Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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