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lookslikemyeloma
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Posted: Mon Nov 3rd, 2008 11:19 pm |
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Hi, last January my husband was diagnosed with mutliple myeloma through a blood test and full MRI. However, subsequent test revealed that he may have had it but it is gone. The bones are clean, no malignacies, no inflammation etc. The problem is that he still has all the damaged of having mm but his bones have not healed at all and he is in as much pain as before. He is taking daily injections of Forteo and has been diagnosed with low testosterone level and just started androgel. He is seeing an endocrinologist, she recommends also seeing a rheumatologist and a neurologist. Basically we are stumped..
Is there any information, or treatment for this or have u heard of this before.
Thanks
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Chat Moderator
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Posted: Mon Nov 17th, 2008 09:34 pm |
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Hi,
I asked Dr. Guido Tricot, the director of Huntsman Cancer Institute's Myeloma Program, about your posting and he said that, in the more than 10,000 patients with myeloma he has seen over the years, he has never seen a case of myeloma sponanteously disappearing. He noted that the fact that there is still bone damage would seem to indicate that this has not been the case.
Please keep us updated on what happens with your husband, and let us know if you are at all interested in having one of our doctors see your husband to try to get to the bottom of this. We're here to help if you need us.
Take care,
Myeloma Chat Moderator at Huntsman Cancer Institute
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lookslikemyeloma
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Posted: Mon Nov 17th, 2008 09:44 pm |
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Thank you, Could the doctor possibly know why based on the mri's why 3 radiologists would say that it looks like a classic case of multiple myeloma based on the poc markings up and down the spine and pelvis? Has he ever heard of anything like this?
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Posted: Tue Nov 18th, 2008 03:02 am |
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| I talked to Dr. Tricot, who says that an MRI in myeloma patients typically shows multiple areas of cancer throughout the whole bone marrow. He notes that an MRI, however, can not diagnose myeloma. It needs to be confirmed with a bone marrow biopsy, because there are causes other than myeloma that can result in the type of MRI pictures that your husband has.
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lookslikemyeloma
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Posted: Tue Nov 18th, 2008 04:07 am |
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| Thank you, we are working with an endocrinologist/osteoprosis specialist now and trying to get into a rheumatologist and neurologist. Does Dr. Tricot have any other ideas?
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Chat Moderator
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Posted: Wed Nov 19th, 2008 06:40 pm |
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| I think the best thing to do for your husband at this point is to get him to a doctor who specializes in myeloma so they can tell you exactly what is going on and give you a proper diagnosis. Then you can move on from there and get your husband the treatment he needs based on what the myeloma specialists tell you about his disease. If your husband has myeloma, it's very important to get him on a treatment plan right away to control it and give him the best quality of life possible.
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lookslikemyeloma
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Posted: Thu Nov 20th, 2008 03:20 am |
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That's our problem. He only showed positive on one blood test. Marrow, biopsy of affected area, all other tests came back negative. He is has a low bone density score and low testosterone levels, and elevated BP, but that's it. We have seen an oncologist, but its not cancer or at least its not now.
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lookslikemyeloma
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Posted: Thu Nov 20th, 2008 03:20 am |
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That's our problem. He only showed positive on one blood test. Marrow, biopsy of affected area, all other tests came back negative. He is has a low bone density score and low testosterone levels, and elevated BP, but that's it. We have seen an oncologist, but its not cancer or at least its not now.
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Chat Moderator
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Posted: Fri Nov 21st, 2008 11:10 pm |
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My worry is that it is cancer, though. If he was diagnosed with multiple myeloma, that doesn't just disappear without treatment. And if three radiologists told you it looks like multiple myeloma, I think that is important too. In my opinion, you really do need to see a myeloma specialist (not just a general oncologist). They can tell you exactly what's going on and clear up the confusion. I would hate for someone to have told your husband that he does not have myeloma when the truth is that he does. It is dangerous to leave myeloma untreated.
Does that make sense?
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Posted: Fri Nov 21st, 2008 11:50 pm |
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| When I see Dr. Tricot today I will present all of the latest facts you have given and then let you know what he says. I'll get back to you shortly.
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Chat Moderator
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Posted: Sat Nov 22nd, 2008 01:10 am |
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Hi again,
Dr. Tricot indicated that it is possible to have a negative bone marrow and still have myeloma. This is not uncommon. It is also possible to have non-secretory myeloma that does not show up in the blood or urine. Given your husband's MRI results, bone damage, pain, etc., his advice to you would be to see a myeloma specialist soon. A doctor who specializes in myeloma specifically will certainly be able to clear things up for you and give you a reliable diagnosis.
Please let me know if there's anything else we can do to help.
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