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Re: High-risk smoldering myeloma - experiences / opinions?
Thanks for the link, Blee! To all the fellow smolderers ... can we, as high-risk, be treated outside of a clinical trial? Let's keep in close touch so we can share our experiences. I will be going back to University of Maryland next week. Until then, I'm going to enjoy some Olympics!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
Gardengirl,
There was recent study suggesting early treatment for SMM that showed a great response with prolonged survival. However, it isn't mainstream yet so insurance will not cover it. The only option is a clinical trial right now. Hopefully changing soon. I have moderate osteopenia after being on calcium and vitamin D for 8 years, so I qualify for bisphosphonates. This won't do anything for rate of progression, but it will delay skelatal related events, which is important to quality of life.
My FLC ratio does not qualify as abnormal now that I am Stage 1. The entire time I was MGUS (8 years) it was abnormal. Go figure. However, I do have immunoparesis - both IgM and IgA - and I think soon enough that will be considered a risk factor. Has anyone heard anything about this?
There was recent study suggesting early treatment for SMM that showed a great response with prolonged survival. However, it isn't mainstream yet so insurance will not cover it. The only option is a clinical trial right now. Hopefully changing soon. I have moderate osteopenia after being on calcium and vitamin D for 8 years, so I qualify for bisphosphonates. This won't do anything for rate of progression, but it will delay skelatal related events, which is important to quality of life.
My FLC ratio does not qualify as abnormal now that I am Stage 1. The entire time I was MGUS (8 years) it was abnormal. Go figure. However, I do have immunoparesis - both IgM and IgA - and I think soon enough that will be considered a risk factor. Has anyone heard anything about this?
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jbh
Re: High-risk smoldering myeloma - experiences / opinions?
So, the challenge for SMM patients being treated outside of a trial is insurance. Each insurance's policy on treating multiple myeloma is heavily influenced by the NCCN guidelines. SMM currently is only treated by the NCCN as being one and only one stage (i.e. high risk SMM is not a unique classification).
You can read the NCCN recommendations on how to handle myeloma here. There is a section on SMM.
http://myeloma.org/pdfs/10_Steps/Step01/2012-%20NCCN_Guidelines.pdf
Basically, it says that observation or clinical trials are the only recommended options for SMM.
Having said this, there is a lot of discussion and debate amongst the professionals involved in NCCN about modifying the NCCN guidelines to make High Risk SMM a unique classification (basically, an early stage of multiple myeloma) and to allow early treatment. But until that happens, this will be an obstacle for treatment coverage of SMM patients outside of a trial.
But the real bottom line is that you need to verify with your own insurance company what their policy is on treating myeloma. NCCN is important, but it all comes down to what the individual insurance company's policy is.
Note that it is also not just a question of whether an insurance company will allow treatment, but it is also a question of which drugs they will approve even if the do approve treatment in general. Drugs like Kyprolis (part of the NIH High Risk SMM trial) are not currently approved for frontline treatment, but rather only for RR patients. So, there is always the question of whether an insurance company will pay for a particular drug if its prescribed "off label" or simply not approved by the insurance company at all. So, you may lose a very important choice in drug selection (as an example, Kyprolis has some very interesting benefits over Velcade...as well as some negatives) if you go off trial.
There is also a bit of nightmare to deal with if you are trying to pick an insurance company from a list of companies under the AHCA in the US. It is incredibly challenging to sort through all the policies on drugs for given stages of multiple myeloma, SCT policies and general treatment guidelines that vary from insurance company to insurance company...and that isn't going to get any easier any time soon.
Lastly, there is the question of what is best for all patients and the industry. Folks like Dr. Landgren at the NIH will strongly advocate that no SMM patient be treated outside of a trial. The reason is that the data for that individual's treatment success/failure would not be flagged and tracked for the use of folks investigating the best ways to treat SMM, and ultimately other SMM patients.
Not a simple issue for us smolderers to deal with, eh?
As the first step, I would suggest you call your insurance company and also review their clinical bulletins to see if you even have an option for coverage at your stage....and then take it from there.
You can read the NCCN recommendations on how to handle myeloma here. There is a section on SMM.
http://myeloma.org/pdfs/10_Steps/Step01/2012-%20NCCN_Guidelines.pdf
Basically, it says that observation or clinical trials are the only recommended options for SMM.
Having said this, there is a lot of discussion and debate amongst the professionals involved in NCCN about modifying the NCCN guidelines to make High Risk SMM a unique classification (basically, an early stage of multiple myeloma) and to allow early treatment. But until that happens, this will be an obstacle for treatment coverage of SMM patients outside of a trial.
But the real bottom line is that you need to verify with your own insurance company what their policy is on treating myeloma. NCCN is important, but it all comes down to what the individual insurance company's policy is.
Note that it is also not just a question of whether an insurance company will allow treatment, but it is also a question of which drugs they will approve even if the do approve treatment in general. Drugs like Kyprolis (part of the NIH High Risk SMM trial) are not currently approved for frontline treatment, but rather only for RR patients. So, there is always the question of whether an insurance company will pay for a particular drug if its prescribed "off label" or simply not approved by the insurance company at all. So, you may lose a very important choice in drug selection (as an example, Kyprolis has some very interesting benefits over Velcade...as well as some negatives) if you go off trial.
There is also a bit of nightmare to deal with if you are trying to pick an insurance company from a list of companies under the AHCA in the US. It is incredibly challenging to sort through all the policies on drugs for given stages of multiple myeloma, SCT policies and general treatment guidelines that vary from insurance company to insurance company...and that isn't going to get any easier any time soon.
Lastly, there is the question of what is best for all patients and the industry. Folks like Dr. Landgren at the NIH will strongly advocate that no SMM patient be treated outside of a trial. The reason is that the data for that individual's treatment success/failure would not be flagged and tracked for the use of folks investigating the best ways to treat SMM, and ultimately other SMM patients.
Not a simple issue for us smolderers to deal with, eh?
As the first step, I would suggest you call your insurance company and also review their clinical bulletins to see if you even have an option for coverage at your stage....and then take it from there.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk smoldering myeloma - experiences / opinions?
So, in a span of 3 weeks, I went from MGUS to smoldering myeloma to high-risk smoldering myeloma. My head is spinning. I am so grateful to have found this site, not just for all the information (by the way, I am convinced you all are doctors ... or just brilliant), but the willingness to share and in such a positive and comforting way.
I am meeting with my local doctor tomorrow and they will coordinate care with my doctor at Mayo.
I am open to any suggestions about questions I need to ask, numbers I need to pay attention to, or any other wisdom you would like to share.
I hope in the coming weeks to become more knowledgeable in my new new world of high-risk smoldering myeloma.
Keeping positive thoughts and sending them out to all of you.
I am meeting with my local doctor tomorrow and they will coordinate care with my doctor at Mayo.
I am open to any suggestions about questions I need to ask, numbers I need to pay attention to, or any other wisdom you would like to share.
I hope in the coming weeks to become more knowledgeable in my new new world of high-risk smoldering myeloma.
Keeping positive thoughts and sending them out to all of you.
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Smittie - Age at diagnosis: 54
Re: High-risk smoldering myeloma - experiences / opinions?
Hi Smittie! Welcome to the roller coaster ride of your life.
For the past 6 weeks I had graduated from high-risk smoldering myeloma to stage 1 multiple myeloma based on a plasmacytoma in my cervical spine. I was prepared to start treatment next week!
BUT today I have been happily demoted back to smoldering myeloma. Three different radiologists think that it is only a hemangioma.
I always take a list of questions to my doctor. Today I asked him questions about my numbers and he told me it all depends on the individual. Some of his patients have Ig numbers over 5000 and FLC over 2000 and they are still smoldering.
For me, personally, they are checking my blood on a monthly basis and as soon as any CRAB symptoms are imminent, then I will start treatment. A clinical trial is another possibility, so perhaps your doctor can help you there.
Being Type A (funny, I'm IgA as well; wonder if that's significant?
) I have made a chart to follow my numbers. I included all the pertinent ones for multiple myeloma (calcium, BUN, creatinine, Hb, SPEP, UPEP, immunofixation, etc... ). The best thing you can do is learn as much as you can about this disease. Knowledge is power!
Best wishes and sending positive thoughts to you!
For the past 6 weeks I had graduated from high-risk smoldering myeloma to stage 1 multiple myeloma based on a plasmacytoma in my cervical spine. I was prepared to start treatment next week!
BUT today I have been happily demoted back to smoldering myeloma. Three different radiologists think that it is only a hemangioma.
I always take a list of questions to my doctor. Today I asked him questions about my numbers and he told me it all depends on the individual. Some of his patients have Ig numbers over 5000 and FLC over 2000 and they are still smoldering.
For me, personally, they are checking my blood on a monthly basis and as soon as any CRAB symptoms are imminent, then I will start treatment. A clinical trial is another possibility, so perhaps your doctor can help you there.
Being Type A (funny, I'm IgA as well; wonder if that's significant?
) I have made a chart to follow my numbers. I included all the pertinent ones for multiple myeloma (calcium, BUN, creatinine, Hb, SPEP, UPEP, immunofixation, etc... ). The best thing you can do is learn as much as you can about this disease. Knowledge is power! Best wishes and sending positive thoughts to you!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
So happy for you -- best "demotion" ever. Welcome back to SMM!
Was wondering about Ig 5000+ and FLC 2000+. Is your doctor referring to patients who have these numbers at diagnosis, or would he still not start treatment even if they were trending up and reached these levels (which are scary high), as long as still no CRAB?
I worry about light chains in particular, because they cause kidney damage, and the creatinine test is not that helpful in detecting early stage kidney disease.
Was wondering about Ig 5000+ and FLC 2000+. Is your doctor referring to patients who have these numbers at diagnosis, or would he still not start treatment even if they were trending up and reached these levels (which are scary high), as long as still no CRAB?
I worry about light chains in particular, because they cause kidney damage, and the creatinine test is not that helpful in detecting early stage kidney disease.
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: High-risk smoldering myeloma - experiences / opinions?
Hi Gardengirl ... sure has been one wild roller coaster ride. Wonderful to read your news. I am trying to learn all I can while not letting it consume as it has. Any wisdom on getting back to living blood test to blood test? Reading these entries has helped for sure ... sharing with others who are on the same roller coaster. Here is to more ups on our rides than down.
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Smittie - Age at diagnosis: 54
Re: High-risk smoldering myeloma - experiences / opinions?
Hi Blee!
My doctor recommends that all of his patients seek a second opinion by a myeloma specialist at a transplant center, mainly to touch base and make sure he is correct in his thinking. He does only watch those patients with the scary numbers if they have no CRAB symptoms, and maybe on occasion they will return to the specialist.
He told me that he will watch my numbers closely and let me know when I should start treatment; he caters to each patient as an individual (i.e., because I am petite, he won't wait until my creatinine gets up to 1.00) I also worry about kidney damage with my light chains, so I drink tons of water every day ... and spend the rest of it in the bathroom!
I'm sure you are familiar with this Spanish study:
https://myelomabeacon.org/news/2013/08/02/revlimid-lenalidomide-dexamethasone-high-risk-smoldering-myeloma/
If early treatment as described in the study can be approved, I'm in!
Hang in there, Smittie ... it gets better! For me, personally, I have the attitude that this is what it is ... I can't change it, so I'm not going to stress over that fact.
Yes, it did consume me emotionally the first 3 months, but now I have accepted it. Yes, I still get angry at times, but then I realize that's normal! I also feel that we have been given the gift of early detection, so we have lots of time to research, lots of time for new therapies to be discovered, and lots of time to live and enjoy life!
My doctor recommends that all of his patients seek a second opinion by a myeloma specialist at a transplant center, mainly to touch base and make sure he is correct in his thinking. He does only watch those patients with the scary numbers if they have no CRAB symptoms, and maybe on occasion they will return to the specialist.
He told me that he will watch my numbers closely and let me know when I should start treatment; he caters to each patient as an individual (i.e., because I am petite, he won't wait until my creatinine gets up to 1.00) I also worry about kidney damage with my light chains, so I drink tons of water every day ... and spend the rest of it in the bathroom!
I'm sure you are familiar with this Spanish study:
https://myelomabeacon.org/news/2013/08/02/revlimid-lenalidomide-dexamethasone-high-risk-smoldering-myeloma/
If early treatment as described in the study can be approved, I'm in!
Hang in there, Smittie ... it gets better! For me, personally, I have the attitude that this is what it is ... I can't change it, so I'm not going to stress over that fact.
Yes, it did consume me emotionally the first 3 months, but now I have accepted it. Yes, I still get angry at times, but then I realize that's normal! I also feel that we have been given the gift of early detection, so we have lots of time to research, lots of time for new therapies to be discovered, and lots of time to live and enjoy life!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
Hi gardengirl,
Sorry that we are simultaneously running 2 threads here, so I may be getting confused.
It sounds like your doctor was planning to be very vigilant about your creatinine and was not going to start treatment at this time. However, now that insurance may cover treatment, will you begin treatment even with stable creatinine?
I also drink tons of water and make sure I know where bathrooms are located wherever I go!
Sorry that we are simultaneously running 2 threads here, so I may be getting confused.
It sounds like your doctor was planning to be very vigilant about your creatinine and was not going to start treatment at this time. However, now that insurance may cover treatment, will you begin treatment even with stable creatinine?
I also drink tons of water and make sure I know where bathrooms are located wherever I go!
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: High-risk smoldering myeloma - experiences / opinions?
Thanks for the kind words Gardengirl. I do have a doctor here at home and a specialist about 6 hours away. I am trying/choosing to stay hopeful because I do feel fortunate this was detected and is being watched so carefully. I only have the first round of tests under my belt. Sounds to me like a real ride when tests are repeated. Going to try one step at a time and continue to learn. TGIF
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Smittie - Age at diagnosis: 54
21 posts
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