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Shelley10001
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| Joined: | Tue Jan 6th, 2009 |
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Posted: Tue Jan 6th, 2009 09:12 pm |
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I have been ill since the first part of September. Extreme pressure in my head - had testing done for Vasculitis which was negative. I am on steroids, but they are tapering me off - currently at 10 mg a day. I have been having a blood test done nearly every week and I just got the results of the latest one today. It said "immunofixation of serum shows the presence of an IgG kappa monoclonal protein", so they did another blood test today for "Serum Free Light Chains".
What does all this mean? I googled the "IgG kappa monoclonal" and the results came up as Multiple Myeloma. I don't see the doctor until next week, and needless to say I am kind of scared. Could someone shed some light on this? Are those blood test results saying I have this?
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Chat Moderator
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Posted: Tue Jan 6th, 2009 10:05 pm |
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Hi,
I consulted with Dr. Tricot, the Director of the Huntsman Cancer Institute Myeloma Program, about your question and here is what he says:
There is not enough information to know what exactly you have. It could be benign, such as monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma, but it could also be multiple myeloma, chronic lymphocyic leukemia, or non-Hodgkin's lymphoma.
Although the latter diseases are cancers, there is good treatment available for those cancers. However, it is critical that you receive the best possible treatment. If it turns out to be cancer and you require treatment, we recommend finding a doctor who truly specializes in the type of cancer you have, even if it means traveling beyond the area in which you live. This is very important and can make a big difference.
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Shelley10001
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Posted: Wed Jan 7th, 2009 10:25 am |
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Thank you for your response. I am very fortunate that I am just a two hour drive from the Mayo Clinic in Rochester, MN. Do you feel that I should contact them for an appointment as soon as possible? Or should I wait to see what the local doctors recommend?
It was a rheumatologist that ordered the Serum Protein Electrophoresis test, as he was trying to determine the cause of the inflammation in the arteries in my head. Have others experienced that type of inflammation associated with this disease/associated diseases? Or do you feel that is a totally separate issue?
As I mentioned, just yesterday I had a blood test for "Serum Free Light Chains" and a urine test for "Urine Innunofixation for BJ Protein". What is the next type of test/procedure that I should expect?
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Annick
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Posted: Thu Jan 8th, 2009 04:58 am |
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Hi Shelley,
Thanks for your question. I would expect that you will probably have some radiology scans (hopefully a PET-CT and MRI), and a bone marrow biopsy and aspirate as well. Both these tests are going to be necessary in determining the final diagnosis. Once you have a definitive diagnosis, and if it's not a benign condition like MGUS or smoldering myeloma, I would also recommend that you investigate several options for treatment. The closest center to you may not be the best fit for you treatment philosophy-wise, so keeping an open mind and researching the different approaches to treating the disease will help you make the most informed decision possible in terms what center to entrust your care to. Also, different centers accept different insurance carriers, so finding a specialist who accepts your insurance will be of tantamount importance as well.
Best of luck to you,
Annick
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Shelley10001
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Posted: Thu Jan 8th, 2009 05:08 pm |
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Thank you so much Annick,
Your words are very important to me as I try to get a handle on what this is all about. I see the local rheumatologist this upcoming Monday and he will have the results of the serum free light chain test and urine BJ protein test...I did make an appointment at Mayo Clinic (Jan 31), but am heeding your words in regard to how to handle any possible treatment, and where one should go to accomplish that if necessary.
Thank you again, I can already see the great benefit this chat room provides to those who are dealing with this condition.
Shelley
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