I was diagnosed with smoldering myeloma last March, with plasma cell percentage of 13%, IgG of 3076 mg/dL and M-spike of 2.6 g/dL (26 g/L). My last IgG went up to 3365 mg/dL without any CRAB symptoms.
My myeloma specialist wants me to continue with a CBC every 90 days and watch and wait. I have asked numerous questions when we meet but feel I get the shortest and most conservative answers. When I ask about the direction we might take if my numbers continue upwards and I begin to experience CRAB symptoms, he wants to wait to discuss when it happens.
My question is: Am I expecting too much? My wife and I feel it's time to seek out another myeloma specialist, even though it will be a great inconvenience based on the distance.
I feel to wait until CRAB symptoms develop before I undergo therapy is not in my best interest and that another specialist could be more aggressive.
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Re: Time for second opinion from another myeloma specialist?
I strongly believe that all myeloma or smoldering myeloma patients should go to a center that specializes in myeloma for analysis and guidance. That doesn't mean they will recommend immediate treatment, but the top centers have seen more patients and have a level of understanding and sophistication relating to this complicated disease that goes far beyond what a local specialist can provide.
I was diagnosed with smoldering myeloma in September 2009. I have no CRAB symptoms but my plasma cell % and protein numbers put me at very high risk to progression. Nevertheless I am still symptom free without having received myeloma treatment (other than periodic Zometa infusions) for over 5 years. During this time I have been going to UAMS in Little Rock, Arkansas approximately every 6 months for thorough testing and consulting, and I get additional lab work every 6-8 weeks to make sure there are no signs of imminent progression. I have also consulted with several other myeloma specialists. I highly recommend UAMS and would be happy to speak to you directly about my experiences if you would like.
I was diagnosed with smoldering myeloma in September 2009. I have no CRAB symptoms but my plasma cell % and protein numbers put me at very high risk to progression. Nevertheless I am still symptom free without having received myeloma treatment (other than periodic Zometa infusions) for over 5 years. During this time I have been going to UAMS in Little Rock, Arkansas approximately every 6 months for thorough testing and consulting, and I get additional lab work every 6-8 weeks to make sure there are no signs of imminent progression. I have also consulted with several other myeloma specialists. I highly recommend UAMS and would be happy to speak to you directly about my experiences if you would like.
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JasonH
Re: Time for second opinion from another myeloma specialist?
Hi shall167,
You don't say where you're located, but it sounds like you're probably in the U.S.
If so, you may want to consider Dr. Ola Landgren at Sloan-Kettering, formerly of the NIH. He is probably the leading expert in the world on smoldering myeloma, and there also are a number of other myeloma specialists on staff at Sloan-Kettering, including Dr. Heather Landau, who helps out here in the forum regularly. Dr. Landgren has been leading a trial of Kyprolis, Revlimid, and dexamethasone in smoldering myeloma patients, so I suspect he's likely to look favorably on the possibility of treating the disease earlier rather than later.
The Mayo Clinic also has a lot of smoldering experience simply due to their size and the number of patients they see across their three U.S. locations. Also, the Mayo Clinic's Dr. Vincent Rajkumar was the lead author of the recent publication which outlined the new criteria for the diagnosis of multiple myeloma, which changed the definitions of active myeloma and smoldering myeloma. There's an explanation of the changes in this Beacon article by Dr. Rajkumar,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
The Mayo doctors, however, probably won't actively treat smoldering myeloma outside of a clinical trial if it's truly smoldering myeloma according to the new myeloma diagnostic criteria.
I don't know much about how UAMS handles smoldering myeloma patients. When it comes to patients with active myeloma, however, they tend to be very aggressive, with a one-size-fits-all, throw-the-kitchen-sink-at-the-disease type of approach (four- or five-drug induction therapy, two autologous stem cell transplants, consolidation in between the transplants, and also extended and intensive maintenance therapy afterward the second transplant).
If you let us know where you are and how far you're willing to travel for a second opinion, we probably can give you some additional suggestions. You can also consult the Beacon's list of myeloma treatment centers:
Multiple Myeloma Treatment Centers
Good luck!
You don't say where you're located, but it sounds like you're probably in the U.S.
If so, you may want to consider Dr. Ola Landgren at Sloan-Kettering, formerly of the NIH. He is probably the leading expert in the world on smoldering myeloma, and there also are a number of other myeloma specialists on staff at Sloan-Kettering, including Dr. Heather Landau, who helps out here in the forum regularly. Dr. Landgren has been leading a trial of Kyprolis, Revlimid, and dexamethasone in smoldering myeloma patients, so I suspect he's likely to look favorably on the possibility of treating the disease earlier rather than later.
The Mayo Clinic also has a lot of smoldering experience simply due to their size and the number of patients they see across their three U.S. locations. Also, the Mayo Clinic's Dr. Vincent Rajkumar was the lead author of the recent publication which outlined the new criteria for the diagnosis of multiple myeloma, which changed the definitions of active myeloma and smoldering myeloma. There's an explanation of the changes in this Beacon article by Dr. Rajkumar,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
The Mayo doctors, however, probably won't actively treat smoldering myeloma outside of a clinical trial if it's truly smoldering myeloma according to the new myeloma diagnostic criteria.
I don't know much about how UAMS handles smoldering myeloma patients. When it comes to patients with active myeloma, however, they tend to be very aggressive, with a one-size-fits-all, throw-the-kitchen-sink-at-the-disease type of approach (four- or five-drug induction therapy, two autologous stem cell transplants, consolidation in between the transplants, and also extended and intensive maintenance therapy afterward the second transplant).
If you let us know where you are and how far you're willing to travel for a second opinion, we probably can give you some additional suggestions. You can also consult the Beacon's list of myeloma treatment centers:
Multiple Myeloma Treatment Centers
Good luck!
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JimNY
Re: Time for second opinion from another myeloma specialist?
Thanks for the replies. My wife and I live in southwestern Florida.
My family doctor found high protein in my blood two years ago and suggested I go to see an oncologist, which I did in the Naples, FL, area. After a year with him and reading blogs and forums, I decided to find a specialist, who I have been going to since last March when I was diagnosed with smoldering myeloma.
Based on my FISH testing, he states that I am somewhere between low and medium risk. I have read about UAMS and their more aggressive approach, but also thought that I should check out Mayo in Jacksonville, FL, first.
Also, I forgot to state that when we were checking out with my current specialist, I have my next appointment with a nurse practitioner instead of my doctor. I was not very comfortable with this at all and feel my specialist is just waiting for me to progress before any treatment or therapy.
My family doctor found high protein in my blood two years ago and suggested I go to see an oncologist, which I did in the Naples, FL, area. After a year with him and reading blogs and forums, I decided to find a specialist, who I have been going to since last March when I was diagnosed with smoldering myeloma.
Based on my FISH testing, he states that I am somewhere between low and medium risk. I have read about UAMS and their more aggressive approach, but also thought that I should check out Mayo in Jacksonville, FL, first.
Also, I forgot to state that when we were checking out with my current specialist, I have my next appointment with a nurse practitioner instead of my doctor. I was not very comfortable with this at all and feel my specialist is just waiting for me to progress before any treatment or therapy.
Re: Time for second opinion from another myeloma specialist?
Shall167,
You might want to also consider Moffitt Cancer Center since you are on the southwest coast of Florida; much shorter drive than to Jacksonville.
I too was smoldering for 3 years, but was in the high-risk category and felt similar to you. I made a trip to the National Institute of Health (NIH) for a second opinion from Dr. Ola Landgren's staff in March of last year and was given several choices on how I might proceed. I decided to wait it out and continue to go to Moffitt, since it is very close and I would not have to travel very far, and, to be honest with you, I am glad I did. The other shoe dropped just before Christmas, however, so I am scheduled to start treatment next week.
Remember, not all patients are the same, so you must go with what you feel is best for you. My primary care doctor told me the following not long ago when I ask him about my situation, which helped me decide to wait it out: "Two things you never want to try and convince a doctor you need is, one, surgery, and, two, chemotherapy; they (meaning the oncologist) will know when it is time".
So good luck to you, and I hope the best for you. Having smoldering myeloma is not easy.
You might want to also consider Moffitt Cancer Center since you are on the southwest coast of Florida; much shorter drive than to Jacksonville.
I too was smoldering for 3 years, but was in the high-risk category and felt similar to you. I made a trip to the National Institute of Health (NIH) for a second opinion from Dr. Ola Landgren's staff in March of last year and was given several choices on how I might proceed. I decided to wait it out and continue to go to Moffitt, since it is very close and I would not have to travel very far, and, to be honest with you, I am glad I did. The other shoe dropped just before Christmas, however, so I am scheduled to start treatment next week.
Remember, not all patients are the same, so you must go with what you feel is best for you. My primary care doctor told me the following not long ago when I ask him about my situation, which helped me decide to wait it out: "Two things you never want to try and convince a doctor you need is, one, surgery, and, two, chemotherapy; they (meaning the oncologist) will know when it is time".
So good luck to you, and I hope the best for you. Having smoldering myeloma is not easy.
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Richard L - Name: Richard
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 03/02/2011
- Age at diagnosis: 60
Re: Time for second opinion from another myeloma specialist?
I am currently going to Moffitt. I just do not feel I am getting the best answers to questions. I am sure they are excellent doctors, but I am looking for more discussion and interest in my case.
Sometimes, I do not think they (specialist myeloma doctors) have any idea what we as patients go through. I am sure he has many more patients in much worse condition than I am in, but, to me, that is not an excuse.
Sometimes, I do not think they (specialist myeloma doctors) have any idea what we as patients go through. I am sure he has many more patients in much worse condition than I am in, but, to me, that is not an excuse.
Re: Time for second opinion from another myeloma specialist?
Hi shall167,
You'll be hard pressed, I think, to find a myeloma specialist who will treat smoldering myeloma outside of a clinical trial. This is particularly the case if the disease has been stable and doesn't seem to have any characteristics suggesting that it will soon progress to symptomatic disease.
There's also the issue of insurance. It's not clear to me that any insurance company is going to fork over $10,000 or more each month to treat a smoldering myeloma patient.
If you really want to have your smoldering myeloma treated, your best bet may be to do a search on clinicaltrials.gov for smoldering myeloma trials. This link will take you to a list of open trials recruiting smoldering myeloma patients; several them look interesting:
https://clinicaltrials.gov/ct2/results?recr=Open&cond=smoldering+myeloma
Before you pursue active treatment for your disease, though, it would be worth the time to graph your key disease markers, like your M-spike, free light chain levels and ratio, and plasma cell percentage (if you've had several bone marrow biopsies). I'd also recommend looking at your hemoglobin, calcium, and creatinine levels in your blood test results.
If those markers aren't really trending in the direction suggesting your disease is progressing, you really have to ask yourself whether it's worth doing active treatment.
You'll be hard pressed, I think, to find a myeloma specialist who will treat smoldering myeloma outside of a clinical trial. This is particularly the case if the disease has been stable and doesn't seem to have any characteristics suggesting that it will soon progress to symptomatic disease.
There's also the issue of insurance. It's not clear to me that any insurance company is going to fork over $10,000 or more each month to treat a smoldering myeloma patient.
If you really want to have your smoldering myeloma treated, your best bet may be to do a search on clinicaltrials.gov for smoldering myeloma trials. This link will take you to a list of open trials recruiting smoldering myeloma patients; several them look interesting:
https://clinicaltrials.gov/ct2/results?recr=Open&cond=smoldering+myeloma
Before you pursue active treatment for your disease, though, it would be worth the time to graph your key disease markers, like your M-spike, free light chain levels and ratio, and plasma cell percentage (if you've had several bone marrow biopsies). I'd also recommend looking at your hemoglobin, calcium, and creatinine levels in your blood test results.
If those markers aren't really trending in the direction suggesting your disease is progressing, you really have to ask yourself whether it's worth doing active treatment.
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Jonah
Re: Time for second opinion from another myeloma specialist?
Hello shall167. I can appreciate your frustration, and anxiety of living with smoldering myeloma. The acceptable protocol for treating smoldering patients is a watch-and-wait approach. There is much discussion regarding this approach and, until treatment is found to be effective, the medical community and insurance reimbursement will continue to shy away from aggressively treating smoldering patients. I'm sure liability is also an issue.
I would recommend you get a second opinion of your disease status and treatment options, if for no other reason than to give yourself some satisfaction and peace of mind.
I am a Moffitt patient and I can only tell you what my experience has been. In my opinion, the myeloma specialists at Moffitt are not only experts in their field, they have a genuine compassion for their patients. I have active disease and recently had an autologous (own) stem cell transplant at Moffitt. All of my appointments and follow ups are with my myeloma doctor, so I suspect since you are smoldering you do not always see the doctor. I would guess that, if you asked specifically to see a doctor instead of an ARNP, they would accommodate your request. I have found the people at Moffitt to be kind, cooperative, professional and expert in their field.
Wishing you the best.
I would recommend you get a second opinion of your disease status and treatment options, if for no other reason than to give yourself some satisfaction and peace of mind.
I am a Moffitt patient and I can only tell you what my experience has been. In my opinion, the myeloma specialists at Moffitt are not only experts in their field, they have a genuine compassion for their patients. I have active disease and recently had an autologous (own) stem cell transplant at Moffitt. All of my appointments and follow ups are with my myeloma doctor, so I suspect since you are smoldering you do not always see the doctor. I would guess that, if you asked specifically to see a doctor instead of an ARNP, they would accommodate your request. I have found the people at Moffitt to be kind, cooperative, professional and expert in their field.
Wishing you the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Time for second opinion from another myeloma specialist?
Shall,
What are your free light chain values (one of the items Jonah also referred to)? With the numbers you did post, I am wondering if you meet any of the new criteria that Jim mentioned above? Specifically, I was thinking about this criterion:
"Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free light chain is at least 100 mg/L (a patient’s “involved” free light chain – either kappa or lambda – is the one that is above the normal reference range; the uninvolved light chain is the one that typically is in, or below, the normal range)"
Not all oncologists are familiar with the new criteria for the diagnosis of multiple myeloma.
What are your free light chain values (one of the items Jonah also referred to)? With the numbers you did post, I am wondering if you meet any of the new criteria that Jim mentioned above? Specifically, I was thinking about this criterion:
"Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free light chain is at least 100 mg/L (a patient’s “involved” free light chain – either kappa or lambda – is the one that is above the normal reference range; the uninvolved light chain is the one that typically is in, or below, the normal range)"
Not all oncologists are familiar with the new criteria for the diagnosis of multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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