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Re: Would you consider treatment for High Risk Smoldering mu
i, too, was classified high risk SMM by both the Mayo and Spanish criteria (both of which have very small Ns). I was diagnosed in Feb 2006 and my numbers have been stable ever since (quarterly blood work). I am in the NIH natural hx observational trial and have been approached to start early treatment. I am very confused about what to do since i haven't converted in 7 1/2 yrs. I have no bone lesions (on skeletal series), M protein 3.0-3.4 over the 7+ yrs and normal Hb and Ca++. What are your thoughts? thank you.
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SharonKB
Re: Would you consider treatment for High Risk Smoldering mu
Hi SharonKB,
I understand your confusion. Since I started this post, I believe the multiple myeloma community might be shifting towards treating HR SMM (aka early myeloma) as there have been many articles about this very subject. I believe more and more of these clinical trials treating HRSMM are showing positive response rates. I think the key is making sure you truly are a HR Smolderer, and I think that is one of the most difficult points to assess (it has been in my case at least).
Is there is any other/additional info you can share here so members can respond to you? What specifically made them label you HR SMM? Was it the % of plasma cells? how specifically did you meet the Mayo and Spanish criteria? were you diagnosed as HR SMM in Feb 2006? that is a long time, I was told HR SMM usually progressed within 18 months to 5 years. Were you MGUS for a bit?
Just trying to think of info folks may need to help answer your question. All the best to you, sorry I couldn't be more helpful.
Dana
I understand your confusion. Since I started this post, I believe the multiple myeloma community might be shifting towards treating HR SMM (aka early myeloma) as there have been many articles about this very subject. I believe more and more of these clinical trials treating HRSMM are showing positive response rates. I think the key is making sure you truly are a HR Smolderer, and I think that is one of the most difficult points to assess (it has been in my case at least).
Is there is any other/additional info you can share here so members can respond to you? What specifically made them label you HR SMM? Was it the % of plasma cells? how specifically did you meet the Mayo and Spanish criteria? were you diagnosed as HR SMM in Feb 2006? that is a long time, I was told HR SMM usually progressed within 18 months to 5 years. Were you MGUS for a bit?
Just trying to think of info folks may need to help answer your question. All the best to you, sorry I couldn't be more helpful.
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Would you consider treatment for High Risk Smoldering mu
Hi Dana:
Last I wrote I was leaving for NIH (I, too, am in Dr Langren's SMM natural hx study). I had the great fortune of talking to Dr Langren at length about high risk SMM and treatment for SMM. Because I’m on the 'cusp' of ranges of SMM, I swing between medium and hi risk, depending on which rating system you're looking at the Mayo or Spanish. I was told that if my M spike went down even slightly, I could even be in a low risk category. I took all this as a sign that I needed to stop labeling myself and get on with life. Based on our conversation, I’m confident Dr Langren concurred. Current rating systems have a lot to be desired. Both were based on a relatively small number of study participants. Dr Langren looked at all of his SMM patients against the criteria of both and something like 75% of them couldn't be neatly classified as only hi risk or only med or low risk.
Dr. Langren also expressed the opinion that a lot more study needs to be done before treatment for SMM should be considered. We discussed the latest study advocating for early treatment of hi risk SMM and he felt there were many limitations to the study and, at this point in time, wouldn't advocate for it --- yet. I believe that may be coming in the not-too-distant future but, in my opinion, a new, improved rating system needs to be developed first. There may be one coming after clinical trials re: imaging of SMM folks (whole body MRI and PET scan).
In the meantime, I’m going to focus on living and not what classification of SMM I’m in!
My 2 cents, Sharon
Last I wrote I was leaving for NIH (I, too, am in Dr Langren's SMM natural hx study). I had the great fortune of talking to Dr Langren at length about high risk SMM and treatment for SMM. Because I’m on the 'cusp' of ranges of SMM, I swing between medium and hi risk, depending on which rating system you're looking at the Mayo or Spanish. I was told that if my M spike went down even slightly, I could even be in a low risk category. I took all this as a sign that I needed to stop labeling myself and get on with life. Based on our conversation, I’m confident Dr Langren concurred. Current rating systems have a lot to be desired. Both were based on a relatively small number of study participants. Dr Langren looked at all of his SMM patients against the criteria of both and something like 75% of them couldn't be neatly classified as only hi risk or only med or low risk.
Dr. Langren also expressed the opinion that a lot more study needs to be done before treatment for SMM should be considered. We discussed the latest study advocating for early treatment of hi risk SMM and he felt there were many limitations to the study and, at this point in time, wouldn't advocate for it --- yet. I believe that may be coming in the not-too-distant future but, in my opinion, a new, improved rating system needs to be developed first. There may be one coming after clinical trials re: imaging of SMM folks (whole body MRI and PET scan).
In the meantime, I’m going to focus on living and not what classification of SMM I’m in!
My 2 cents, Sharon
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SharonKB
Re: Would you consider treatment for High Risk Smoldering mu
Hi Sharon KB,
Thank you for sharing the info from your latest visit to the NIH. That is awesome that Dr. Langren spoke to you and concurred. I am very relieved for you. I am happy to hear that imaging studies for SMM might be our answer, as the ones we have now are just so discordant. All the very best to you ! Keep on Smoldering !
Dana
Thank you for sharing the info from your latest visit to the NIH. That is awesome that Dr. Langren spoke to you and concurred. I am very relieved for you. I am happy to hear that imaging studies for SMM might be our answer, as the ones we have now are just so discordant. All the very best to you ! Keep on Smoldering !
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
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