During a routine annual exam in February of this year 2018, there were unusual blood test results that required additional testing. Protein electrophoresis; both serum and urine, were done. In addition, a serum immunofixation test was conducted. Obviously when these were ordered, I went into research mode and began to understand what I may be up against. Needless to say, anxiety spiked along with the ...
An IgA M-spike of of 2833 was noted, and I was referred to hematologist / oncologist.
A bone marrow biopsy was performed with 30-40% plasma cells in the bone marrow. The pathology report from the biopsy provided additional insight into the cytogenetics via the "FISH" panel. Four cytogenetic abnormalities were discovered that were associated with high-risk disease.
PET scan was performed with no indications of bone lesions. I am currently smoldering and symptom free, and under active monitoring by a myeloma specialist along with a local oncologist. My myeloma specialist "guessed" I may be a few months from symptoms and treatment. I've explored a clinical trial for "high-risk smoldering" cases such as mine.
A new and unexpected entrant into my field of experience has arrived. Obvious disruptions have necessarily intruded into a somewhat mundane but satisfying retirement. To navigate this intrusion, I've adopted an approach I call the 2 A's. Acceptance but without Acquiescence. With the help of the experience of others similar to myself, I'll hope to become an active participant with my health care providers in the decisions regarding my disease. Hopefully maintaining my dignity through the coming indignities.
Farcical
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: March 2018 smoldering myeloma diagnosis
Welcome to the forum, Farcical. As we always say, sorry you have to be here, but you've found a great source of information and support.
Given your initial blood test and FISH results, how often have you and your doctors decided to do follow-up testing? If you've had any follow-up tests, what have they shown? I hope they've shown stability despite your "high-risk" classification.
Best wishes,
Cheryl
Given your initial blood test and FISH results, how often have you and your doctors decided to do follow-up testing? If you've had any follow-up tests, what have they shown? I hope they've shown stability despite your "high-risk" classification.
Best wishes,
Cheryl
Re: March 2018 smoldering myeloma diagnosis
Cheryl,
I will be monitored on a monthly basis until the emergence of symptoms by my oncologist.
I'm a bit overwhelmed trying to understand what really is important in the lab reports. Up until now multiple labs have been involved, and each has it's own formatting and reporting idiosyncrasies. This has made it difficult to parse and compare results.
My intention in the next appointment with the oncologist is to ensure that I understand which values are important and why, and begin tracking the changes over time. Hopefully using the same lab and reporting will demystify this process.
I didn't realize I would need a crash course in microbiology at this stage of my life!
Kind Regards,
Farcical
I will be monitored on a monthly basis until the emergence of symptoms by my oncologist.
I'm a bit overwhelmed trying to understand what really is important in the lab reports. Up until now multiple labs have been involved, and each has it's own formatting and reporting idiosyncrasies. This has made it difficult to parse and compare results.
My intention in the next appointment with the oncologist is to ensure that I understand which values are important and why, and begin tracking the changes over time. Hopefully using the same lab and reporting will demystify this process.
I didn't realize I would need a crash course in microbiology at this stage of my life!
Kind Regards,
Farcical
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: March 2018 smoldering myeloma diagnosis
Hi Farcical,
The key markers for your disease are your M-spike, your serum free light chain levels and ratio, and your serum immunofixation.
Because you have IgA disease, and IgA M-spikes tend not be to be as accurately measured as other M-spikes, you'll also want to watch your IgA level. Some doctors even go so far as focusing on the IgA level in patients with IgA disease, not paying much attention to the M-spike.
Other markers that can reflect what is going on with your disease are your hemoglobin level, serum calcium level, and serum creatinine level.
All these results can bounce around, even in a patient whose disease is rather stable. See, for example, Multibilly's results in this post.
(Multibilly is smoldering and was diagnosed as such several years ago. He has not undergone any treatment.)
The key markers for your disease are your M-spike, your serum free light chain levels and ratio, and your serum immunofixation.
Because you have IgA disease, and IgA M-spikes tend not be to be as accurately measured as other M-spikes, you'll also want to watch your IgA level. Some doctors even go so far as focusing on the IgA level in patients with IgA disease, not paying much attention to the M-spike.
Other markers that can reflect what is going on with your disease are your hemoglobin level, serum calcium level, and serum creatinine level.
All these results can bounce around, even in a patient whose disease is rather stable. See, for example, Multibilly's results in this post.
(Multibilly is smoldering and was diagnosed as such several years ago. He has not undergone any treatment.)
Re: March 2018 smoldering myeloma diagnosis
Great guidance Cheryl! I'll track those markers going forward. Very helpful.
Kind Regards,
Farcical
Kind Regards,
Farcical
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: March 2018 smoldering myeloma diagnosis
Hi Farcical,
I forgot to say that I'm glad you're being monitored monthly, at least for the time being. I think that makes a lot of sense. It will give you and your doctors a chance to see what exactly your disease is doing and, if it's stable, you'll get a better idea of what your baseline is.
If you do turn out to be stable, you can switch to less frequent testing.
Good luck!
I forgot to say that I'm glad you're being monitored monthly, at least for the time being. I think that makes a lot of sense. It will give you and your doctors a chance to see what exactly your disease is doing and, if it's stable, you'll get a better idea of what your baseline is.
If you do turn out to be stable, you can switch to less frequent testing.
Good luck!
Re: March 2018 smoldering myeloma diagnosis
Thanks for the encouragement Cheryl.
I am trying to manage my internal expectations carefully and I am currently hesitant to allow an unsupported hope for an extended symptom-free smoldering phase to seep in.
Perhaps with time, along with trend following, I’ll get a sense of progression or stability.
Kind Regards,
Farcical
I am trying to manage my internal expectations carefully and I am currently hesitant to allow an unsupported hope for an extended symptom-free smoldering phase to seep in.
Perhaps with time, along with trend following, I’ll get a sense of progression or stability.
Kind Regards,
Farcical
-
Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
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