No symptoms yet. Really confused. Any advice when to start treatment. Thanks
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Smoldering multiple myeloma - when to start treatment?
Just diagnosed with smoldering multiple myeloma 3 weeks ago. Hospital wanted to start treatment with Revlimid, went to VA hospital, said check blood every 3 months. Am also going to see specialist in Durham, North Carolina for another opinion. Have appointment on Thursday.
No symptoms yet. Really confused. Any advice when to start treatment. Thanks
No symptoms yet. Really confused. Any advice when to start treatment. Thanks
Re: Smoldering multiple myeloma - when to start treatment?
Welcome to the forum, whudyg. I'm sorry you're here, but you've found a great place for information and support.
Hardly anything related to multiple myeloma is "standardized", but it is broadly accepted that the appropriate way to "treat" smoldering multiple myeloma is NOT to treat it. There are clinical trials that are testing whether it may be better to treat some smoldering multiple myeloma patient, but the trials are testing a THEORY, not a widely accepted practice.
But the key question in your case is: What is really your diagnosis. If a doctor has recommended treatment outside of a clinical trial, then it makes me wonder whether you have smoldering multiple myeloma, or (symptomatic) multiple myeloma, which does require treatment.
The appointment in Durham will almost certainly clarify what your diagnosis is. But we can help a bit. Here are some questions that should help:
Hardly anything related to multiple myeloma is "standardized", but it is broadly accepted that the appropriate way to "treat" smoldering multiple myeloma is NOT to treat it. There are clinical trials that are testing whether it may be better to treat some smoldering multiple myeloma patient, but the trials are testing a THEORY, not a widely accepted practice.
But the key question in your case is: What is really your diagnosis. If a doctor has recommended treatment outside of a clinical trial, then it makes me wonder whether you have smoldering multiple myeloma, or (symptomatic) multiple myeloma, which does require treatment.
The appointment in Durham will almost certainly clarify what your diagnosis is. But we can help a bit. Here are some questions that should help:
- What is your "M-spike" (abnormal protein level)? (From your "SPEP" test)
- What are your serum free light chain levels (kappa, lambda, and kappa/lambda ratio)?
- What is your hemoglobin level?
- What is your serum (blood) calcium level?
- What is your creatinine level?
- What sort of imaging (xrays, MRI, PET/CT) have you had done, and what did it show?
- Have you had a bone marrow biopsy and, if so, what was your plasma cell percentage?
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JimNY
Re: Smoldering multiple myeloma - when to start treatment?
Hi whudyg,
Welcome to the forum from a fellow smolderer. As usual, JimNY is spot on with his comments.
The one extra question I would add is whether your bone marrow biopsy showed any adverse cytogenetics (genetic mutations) to be concerned about. If, so which specific mutations were found?
Assuming your diagnosis is correct, I might add that any clinical trials for treating smoldering multiple myeloma are restricted to high-risk smoldering patients (answering Jim's questions will help determine your level of risk). Also, assuming that you are indeed smoldering and are not experiencing any organ damage, there is no reason to rush into a clinical trial (or non-trial treatment) right way. Take your time, consult with specialists, do your homework and ask any questions that you might have on this forum.
The following link explains what factors are now commonly used to determine a smolderer's level of risk for progressing to symptomatic multiple myeloma:
https://myelomabeacon.org/forum/smoldering-multiple-myeloma-review-article-t5559.html
Are you headed to Duke in Durham?
Welcome to the forum from a fellow smolderer. As usual, JimNY is spot on with his comments.
The one extra question I would add is whether your bone marrow biopsy showed any adverse cytogenetics (genetic mutations) to be concerned about. If, so which specific mutations were found?
Assuming your diagnosis is correct, I might add that any clinical trials for treating smoldering multiple myeloma are restricted to high-risk smoldering patients (answering Jim's questions will help determine your level of risk). Also, assuming that you are indeed smoldering and are not experiencing any organ damage, there is no reason to rush into a clinical trial (or non-trial treatment) right way. Take your time, consult with specialists, do your homework and ask any questions that you might have on this forum.
The following link explains what factors are now commonly used to determine a smolderer's level of risk for progressing to symptomatic multiple myeloma:
https://myelomabeacon.org/forum/smoldering-multiple-myeloma-review-article-t5559.html
Are you headed to Duke in Durham?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering multiple myeloma - when to start treatment?
Welcome to the group. I think you will find this a very useful source of information.
I was diagnosed with high risk smoldering myeloma in January. What was explained to me is that currently there is no known treatment to prevent progression of smoldering myeloma. Having testing every few months like the VA recommended would be the typical recommendation in most places for both low and high risk smoldering myeloma (I think it may be more frequent in high risk – my hematologist said every two months). There are several clinical trials going on for high risk smoldering multiple myeloma. I enrolled in a clinical trial of Revlimid vs. observation and am in the observation arm (so I'm not getting anything different than I would have anyway, except that I have more frequent testing – every four weeks).
JimNY is right – if you really have smoldering myeloma, it's puzzling that they would recommend Revlimid outside of a clinical trial. If your diagnosis is not smoldering but symptomatic multiple myeloma (which "symptomatic" could mean you have abnormal blood tests like anemia, high calcium, or abnormal kidney function, but still feel fine), then they would not be treating you with just one drug.
It IS very confusing at times. If you are comfortable sharing your numbers, we may be able to help make it a little less confusing.
It's great that you are going to see a myeloma specialist. Please let us know what he or she has to say.
I was diagnosed with high risk smoldering myeloma in January. What was explained to me is that currently there is no known treatment to prevent progression of smoldering myeloma. Having testing every few months like the VA recommended would be the typical recommendation in most places for both low and high risk smoldering myeloma (I think it may be more frequent in high risk – my hematologist said every two months). There are several clinical trials going on for high risk smoldering multiple myeloma. I enrolled in a clinical trial of Revlimid vs. observation and am in the observation arm (so I'm not getting anything different than I would have anyway, except that I have more frequent testing – every four weeks).
JimNY is right – if you really have smoldering myeloma, it's puzzling that they would recommend Revlimid outside of a clinical trial. If your diagnosis is not smoldering but symptomatic multiple myeloma (which "symptomatic" could mean you have abnormal blood tests like anemia, high calcium, or abnormal kidney function, but still feel fine), then they would not be treating you with just one drug.
It IS very confusing at times. If you are comfortable sharing your numbers, we may be able to help make it a little less confusing.
It's great that you are going to see a myeloma specialist. Please let us know what he or she has to say.
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Smoldering multiple myeloma - when to start treatment?
Last year about this time, I was told that my MGUS moved to smoldering and told by my hem/onc doc to start treatment, to be followed by an autologous stem cell transplant (ASCT). Went to two myeloma specialists. One advised the ASCT, the other advised do nothing. I did nothing and am still smoldering right now. My numbers continue to move up, but I'm not in a hurry to start treatment.
I have been looking at Darzalex (daratumumab) as a single agent clinical trial for smoldering patients and have an appointment to discuss it further with a myeloma specialist. Not sure, but want to find out more about it. I think seeing a specialist is key in these situations, and perhaps more than one.
I have been looking at Darzalex (daratumumab) as a single agent clinical trial for smoldering patients and have an appointment to discuss it further with a myeloma specialist. Not sure, but want to find out more about it. I think seeing a specialist is key in these situations, and perhaps more than one.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Smoldering multiple myeloma - when to start treatment?
I have been diagnosed with smoldering myeloma by Sloan-Kettering (in New York City) since July 2013. I feel normal and just fine as of now and am not taking any treatment. I am having normal energy, although due to my age (77) there is some weakening, which is normal to any one my age.
I have started going to Sloan-Kettering's New Jersey location since last year. They have been testing / checking my blood every three months since July 2013. My blood test data shows that my Ca, K, Na and Albumin (in plasma, ~3.6) have been stable. So are my hemoglobin / hematocrit (10-11 and ~32%, respectively), platelet (~290), RBC (~3.5), WBC (~4.5), and creatinine (~0.9). My IgG is stable but at ~4000.
But, my IgA has gone down from 230 (in 2013) to 120 recently and IgM has also gone down from around 40 in 2013 to 26 recently.
The vitamin D25 hydroxy has gone up from 9 in 2013 to 49 recently. Erythrocyte sedimentation rate is @ 75 and unsaturated iron binding capacity has gone down from 318 in 2013 to 231 recently.
However, my free kappa/lambda ratio has gone up from 15 in 2013 to 45 currently where lambda is stable but kappa is going up steadily. This is primarily a concern for my hematologist / oncologist at Sloan-Kettering. She is planning a whole-body MRI before recommending any treatment.
I had PET scans at least three times in the past and nothing came out to be abnormal.
What is your opinion about the progress of my myeloma and what and when treatment should be started?
Thanks.
I have started going to Sloan-Kettering's New Jersey location since last year. They have been testing / checking my blood every three months since July 2013. My blood test data shows that my Ca, K, Na and Albumin (in plasma, ~3.6) have been stable. So are my hemoglobin / hematocrit (10-11 and ~32%, respectively), platelet (~290), RBC (~3.5), WBC (~4.5), and creatinine (~0.9). My IgG is stable but at ~4000.
But, my IgA has gone down from 230 (in 2013) to 120 recently and IgM has also gone down from around 40 in 2013 to 26 recently.
The vitamin D25 hydroxy has gone up from 9 in 2013 to 49 recently. Erythrocyte sedimentation rate is @ 75 and unsaturated iron binding capacity has gone down from 318 in 2013 to 231 recently.
However, my free kappa/lambda ratio has gone up from 15 in 2013 to 45 currently where lambda is stable but kappa is going up steadily. This is primarily a concern for my hematologist / oncologist at Sloan-Kettering. She is planning a whole-body MRI before recommending any treatment.
I had PET scans at least three times in the past and nothing came out to be abnormal.
What is your opinion about the progress of my myeloma and what and when treatment should be started?
Thanks.
6 posts
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