Hi everyone.
I'm new to this forum, but have been so impressed with the kindness, compassion and knowledge that I was hoping to gather some information from anyone who is interested in helping.
My father is 74 and is experiencing some numbness in his toes. He went to a neurologist, who determined there is nothing wrong with his nervous system. Further blood work indicated that the bone marrow was producing an enzyme it allegedly shouldn't be, so further tests were ordered by the hematologist / oncologist, including a full CT. The CT revealed that he has some holes in the bones right above his butt, which may be indicative of multiple myeloma.
We just got this news on Friday and are somewhat devastated. My 42-year-old brother passed away in February unexpectedly, my mother is mentally ill and heavily reliant on my father, and I have no other siblings upon whom to rely. I realize it isn't good to catastrophize, but I'm finding it hard not to do so.
He has to have a marrow biopsy in a couple weeks and we go back to the hematologist / oncologist at the end of August to find out the results and develop a game plan. The hematologist / oncologist was emphatic that it may not be cancer, but really didn't mention what the other diagnostic possibilities are.
Could it be something else? How treatable is multiple myeloma? Is it a death sentence? How do I find a myeloma specialist in Syracuse, NY? What questions should I be asking that I haven't?
My heart breaks at the idea of losing my father, but knowing he's 74, I do realize he is on the "back nine" of life. Any help, thoughts, ideas, perspective, wisdom, etc. would be appreciated.
Thank you all for your time.
Forums
2 posts
• Page 1 of 1
Re: Father may have multiple myeloma - seeking advice
Hi Peak,
Without knowing the test result that led your father's doctor to order the follow-up CT, it's really hard to say whether there are other things he could have besides multiple myeloma.
Do you have access to the results of the different blood tests your father had? If so, you want to track down the results of the following tests: serum protein electrophoresis (SPEP), serum immunofixation electrophoresis (IFE), serum free light chain (Freelite). Also, look through the results for measures of his hemoglobin level, creatinine level, and blood calcium level. Finally, did he have his immunoglobulin levels (IgG, IgA, and IgM) tested?
These results, combined with imaging results, such as x-rays, CT scans, or MRIs, and also with a bone marrow biopsy, play the main role in determining if someone suspected of having multiple myeloma actually has the disease.
If you have some or all of those results, feel free to share them with us, and we can help you interpret them.
One thing that I take as a good sign is that your father's doctors do not feel it urgent that his diagnosis be completed immediately. I would think that, if they really suspected multiple myeloma, they would be hurrying the process to finalize his diagnosis.
That said, it's worth checking the test results I mentioned to see what signs there may be of the disease. If there are clear signs, then I would consider speeding up the process of finalizing his diagnosis.
If you haven't already, read the multiple myeloma article at Wikipedia to get familiar with the disease, and pay attention to the diagnostic criteria section. It will help you understand why I mentioned the test results that I did above.
The criteria in the Wikipedia article are a little out of date. For the current diagnostic criteria, see this article:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Multiple myeloma typically can't be cured, but, in many cases, and with appropriate treatment, it can be kept under control for many years (5-10 years is commonly expected these days, and you can find people who have survived the disease for longer than 20 years).
As you've probably seen regularly here in the forum, it is very helpful in the long run for a myeloma patient to consult with a myeloma specialist. However, you won't find a myeloma specialist in every city. They are usually at major cancer centers. In your father's case, the closest center with myeloma specialists is probably Roswell Park in Buffalo; there are several myeloma specialists there. The other alternative is to go to one of the various cancer centers in the New York City area, or to Dana-Farber or Mass General in Boston.
I hope this information gives you a bit to chew on for a while. We can answer follow-up questions that you may have as they come up. For now, the key is to find out what tests he has had done and what the results of those tests were.
Good luck!
Without knowing the test result that led your father's doctor to order the follow-up CT, it's really hard to say whether there are other things he could have besides multiple myeloma.
Do you have access to the results of the different blood tests your father had? If so, you want to track down the results of the following tests: serum protein electrophoresis (SPEP), serum immunofixation electrophoresis (IFE), serum free light chain (Freelite). Also, look through the results for measures of his hemoglobin level, creatinine level, and blood calcium level. Finally, did he have his immunoglobulin levels (IgG, IgA, and IgM) tested?
These results, combined with imaging results, such as x-rays, CT scans, or MRIs, and also with a bone marrow biopsy, play the main role in determining if someone suspected of having multiple myeloma actually has the disease.
If you have some or all of those results, feel free to share them with us, and we can help you interpret them.
One thing that I take as a good sign is that your father's doctors do not feel it urgent that his diagnosis be completed immediately. I would think that, if they really suspected multiple myeloma, they would be hurrying the process to finalize his diagnosis.
That said, it's worth checking the test results I mentioned to see what signs there may be of the disease. If there are clear signs, then I would consider speeding up the process of finalizing his diagnosis.
If you haven't already, read the multiple myeloma article at Wikipedia to get familiar with the disease, and pay attention to the diagnostic criteria section. It will help you understand why I mentioned the test results that I did above.
The criteria in the Wikipedia article are a little out of date. For the current diagnostic criteria, see this article:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Multiple myeloma typically can't be cured, but, in many cases, and with appropriate treatment, it can be kept under control for many years (5-10 years is commonly expected these days, and you can find people who have survived the disease for longer than 20 years).
As you've probably seen regularly here in the forum, it is very helpful in the long run for a myeloma patient to consult with a myeloma specialist. However, you won't find a myeloma specialist in every city. They are usually at major cancer centers. In your father's case, the closest center with myeloma specialists is probably Roswell Park in Buffalo; there are several myeloma specialists there. The other alternative is to go to one of the various cancer centers in the New York City area, or to Dana-Farber or Mass General in Boston.
I hope this information gives you a bit to chew on for a while. We can answer follow-up questions that you may have as they come up. For now, the key is to find out what tests he has had done and what the results of those tests were.
Good luck!
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• Page 1 of 1
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