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janemarleyUK
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Posted: Thu Feb 12th, 2009 11:04 pm |
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Hi everyone, I am Jane from the UK (England)
I was diagnosed with MGUS (Monoclonal Gammopathy of Unknown Significance) in 2002.
New diagnosis of smoldering myeloma in February 2008.
Bone marrow 25% plasma cells in Feb 2008.
My Hematologist saw me at the clinic today and I was told that my recent MRI scan had found evidence of Myeloma throughout my spine. I am now having a full skeletal survey and bone marrow biopsy within the next month.
My Myeloma type is Igg Kappa, My Kappa Lambda ratio is 111 and my Kappa is very high and my Lambda is very low. I am not anaemic and have normal kidney function, no lesions were found on skeletal scan in 2008. My specialist says that my levels are rising steadily. My only symptoms are very occasional night sweats, hip and leg pain and back pain which could also be caused by having 2 cervical herniated discs and one lumber disc herniation. I recieve intavenous immunoglobulin treatment every 4 weeks for low immunity and recurrent infections.
Today I asked if I am still smoldering or if the results mean I have progressed to full blown myeloma. My specialist said that I am on the crossover stage and she cannot say for sure at the moment whether I have myeloma. I am so confused, in my heart I think I have progressed but no one seems willing to confirm my suspicions.
What does myeloma look like on an MRI without using a contrast injection, what would be seen on the actual MRI scan?
Is my specialist confirming a diagnosis of myeloma by doing the skeletal survey and bone marrow exam, because I was due for a review and due for restaging in March 2009 anyway?
If my x-rays are clear but my bone marrow shows even more plasma cells will treatment start, or will it only start if lesions are found on the x-rays?
Any advice, questions or theories would be much appreciated, Thank you my American friends xx
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Posted: Sun Feb 15th, 2009 11:12 pm |
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Hi,
The results of your MRI and the high level of free kappa in your serum would seem to indicate that this is no longer smoldering myeloma, especially since the myeloma has caused bone damage. An MRI is generally more effective than other x-rays in highlighting the presence of myeloma, so the skeletal survey will likely not tell you too much more information than you already have since skeletal surverys are much less sensitive than MRIs.
A bone marrow exam should certainly be done. We would recommend that the sample is also used to run tests like metaphase cytogenetics and FISH (flourescent in situ hybridization). Cytogenetics testing and FISH identifies chromosomal abnormalities in myeloma cells and the results are important in making a good treatment decision.
I hope this helps.
Sincerely,
The staff of the Huntsman Cancer Institute Myeloma Program
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janemarleyUK
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Posted: Sun Feb 15th, 2009 11:44 pm |
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Thank you so much for confirming my suspicions. I was sure if myeloma was seen on MRI that it must be myeloma not smoldering myeloma, am I right or does smoldering myeloma show up on MRI scan too?
My Globulin level is 60 and my IGg in November 2008 was 31.2, my bone marrow plasma was 26% in January 2008. These levels do not seem to be those of smoldering myeloma either do they?
My specialist mentioned maybe starting treatment in 2-3 months and treatment must mean myeloma, because smoldering myeloma is not treated, it is watched until it progresses into myeloma is this also right?
I just wish they wouldn't hold back information and that they would be clearer with me, it's news I have been expecting, although I will still be shocked when I hear the actual words, it's not going to come as a suprise.
Bless you for being honest
Best wishes from Jane
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Posted: Mon Feb 16th, 2009 09:40 pm |
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Hi Jane,
After reading your comments, the director of the Huntsman Cancer Institute Myeloma Program, Dr. Guido Tricot, says the following:
In MGUS and smoldering myeloma, there are no focal lesions on an MRI or PET scan that are related to myeloma. If you see focal myeloma lesions, it means there is bone involvement and it automatically becomes symptomatic myeloma that requires treatment. The bone marrow number of plasma cells and the amount of myeloma protein are not the important issues. Key issues differentiating smoldering from symptomatic myeloma are: anemia, kidney function deterioration, bone involvement and hypercalcemia. We have seen patients with the amount of myeloma protein you have and the amount of myeloma cells you have in your bone marrow who were smoldering myeloma.
I do not see any benefit in delaying the start of therapy for your myeloma.
All the best,
Dr. Guido Tricot
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janemarleyUK
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Posted: Mon Feb 16th, 2009 10:56 pm |
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Thank you for your reply, I will speak to my specialist here in the UK and try and get a straight answer, she is a hematologist and not a myeloma specialist, but I am a National Health Service Patient and I cannot afford to go private medical. I don't know of any myeloma specialists in the UK but I will now search for one online and try and get a consultation, I am only 43 and want the best treatment that I can get. Thanks again for your honesty.
Best wishes from Jane 
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