I was just diagnosed last week with Stage 1 Asymptomatic multiple myeloma ("probably smoldering" in my doc's words). I'm 56. Key labs results are 1.63 g/dL Mprotein, 11% plasma concentration in bone marrow biopsy, a handful of small lesions from skeletal survey. FISH is pending and I now just realizing how important those FISH results will ultimately be to me .
My doc is saying just monitor for now and get my serum/urine tested again in 3 months. This seems to be the conventional wisdom for Stage 1? Of course, one can always find contradictions on the web regarding any course of treatment, but here is one opinion that states not to let smoldering multiple myeloma smolder http://www.medpagetoday.com/MeetingCoverage/ASHHematology/30258
He also stated that in my case, this will likely progress within a decade, somewhat likely to progress in 5 years, and somewhat unlikely to progress in 2-3 years.
I'm still processing and digesting an overwhelming amt of stuff. But, right now I am looking for a recommendation for a top myeloma specialist in Colorado (although, I am willing to travel elsewhere in the USA) for a second opinion on the course of treatment at this stage and any dialogue on the wisdom of just sitting pat at this stage. I've already reached out to the Univ of Colorado in Denver as they seem to be well respected hub for transplants, etc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly Diagnosed. Seeking Advice and Specialist in Colora
Hi, you indicate that you have bone lesions which showed up in the skeletal survey. Pursuant to the established CRAB criteria, you technically have symptomatic myeloma, not SMM, due to bone involvement. I would get a second opinion from a myeloma expert asap and not wait three months. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly Diagnosed. Seeking Advice and Specialist in Colora
terryl1 wrote:
> Hi, you indicate that you have bone lesions which showed up in the skeletal
> survey. Pursuant to the established CRAB criteria, you technically have
> symptomatic myeloma, not SMM, due to bone involvement. I would get a second
> opinion from a myeloma expert asap and not wait three months. Good luck.
Thanks Terryl1. Not what I wanted to hear, but you are clearly correct now that I go back and look at the basic criteria
So, I guess my question now becomes does Level 1 symptomatic multiple myeloma ever warrant just being monitored or does one typically undergo treatment at this stage?
> Hi, you indicate that you have bone lesions which showed up in the skeletal
> survey. Pursuant to the established CRAB criteria, you technically have
> symptomatic myeloma, not SMM, due to bone involvement. I would get a second
> opinion from a myeloma expert asap and not wait three months. Good luck.
Thanks Terryl1. Not what I wanted to hear, but you are clearly correct now that I go back and look at the basic criteria
So, I guess my question now becomes does Level 1 symptomatic multiple myeloma ever warrant just being monitored or does one typically undergo treatment at this stage?-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly Diagnosed. Seeking Advice and Specialist in Colora
Hello from gray gray Seattle,
There are many good hematology/oncology docs in Colorado. I would point out that there are two practices in the state that have focus in this disease. The University of Colorado Cancer Center should be on your list to consider. In addition the Colorado Blood Cancer Institue at Presbyterian St.Lukes in Denver has many physicians whose practice is focused on cancer of the blood including multiple myeloma. They are the busiest stem cell transplant center for blood diseases (including myeloma) in Colorado.
If you desire a second opinion (always a good idea) these would be excellent choices. I am somewhat concerned that you have "little lesions" in the bone survey. A bone marrow MRI could be valuable. For this reason I think a second opinion may be especially valuable for you.
Best of luck with this....
Ed Libby
There are many good hematology/oncology docs in Colorado. I would point out that there are two practices in the state that have focus in this disease. The University of Colorado Cancer Center should be on your list to consider. In addition the Colorado Blood Cancer Institue at Presbyterian St.Lukes in Denver has many physicians whose practice is focused on cancer of the blood including multiple myeloma. They are the busiest stem cell transplant center for blood diseases (including myeloma) in Colorado.
If you desire a second opinion (always a good idea) these would be excellent choices. I am somewhat concerned that you have "little lesions" in the bone survey. A bone marrow MRI could be valuable. For this reason I think a second opinion may be especially valuable for you.
Best of luck with this....
Ed Libby
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Newly Diagnosed. Seeking Advice and Specialist in Colora
Dr. Edward Libby wrote:
> Hello from gray gray Seattle,
> There are many good hematology/oncology docs in Colorado. I would point out
> that there are two practices in the state that have focus in this disease.
> The University of Colorado Cancer Center should be on your list to
> consider. In addition the Colorado Blood Cancer Institue at Presbyterian
> St.Lukes in Denver has many physicians whose practice is focused on cancer
> of the blood including multiple myeloma. They are the busiest stem cell
> transplant center for blood diseases (including myeloma) in Colorado.
> If you desire a second opinion (always a good idea) these would be
> excellent choices. I am somewhat concerned that you have "little
> lesions" in the bone survey. A bone marrow MRI could be valuable. For
> this reason I think a second opinion may be especially valuable for you.
> Best of luck with this....
> Ed Libby
Thank you!!! It is wonderful having some knowledgeable folks to dialogue with on this subject!
> Hello from gray gray Seattle,
> There are many good hematology/oncology docs in Colorado. I would point out
> that there are two practices in the state that have focus in this disease.
> The University of Colorado Cancer Center should be on your list to
> consider. In addition the Colorado Blood Cancer Institue at Presbyterian
> St.Lukes in Denver has many physicians whose practice is focused on cancer
> of the blood including multiple myeloma. They are the busiest stem cell
> transplant center for blood diseases (including myeloma) in Colorado.
> If you desire a second opinion (always a good idea) these would be
> excellent choices. I am somewhat concerned that you have "little
> lesions" in the bone survey. A bone marrow MRI could be valuable. For
> this reason I think a second opinion may be especially valuable for you.
> Best of luck with this....
> Ed Libby
Thank you!!! It is wonderful having some knowledgeable folks to dialogue with on this subject!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
5 posts
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