My myeloma was identified as MGUS back in 2008 and has been developing. My bone marrow biopsies identified 5% plasma cells in 2008, 5-10% plasma cells in 2010, and 10-15% plasma cells in June this year, so I now have SMM. I have no indication of end organ damage.
Throughout this period my M spike has increased gradually from 2.2 in 2009 to 2.5 last month.
I read an hour ago that CRAB scores are important so here are mine:
Calcium - 9.6 (Normal)
Renal - Creatinine, Serum - 1.0 (Normal)
Anemia - RBC 4.14, HGB 13.7, HCT 40
Bone: Normal bone scans and normal DEXA scan a week ago.
My oncologist believes I should consider therapy in the near future (probably RVD), which I believe would subsequently lead to stem cell harvesting. I wanted to see what participants in this forum thought of this aggressive approach.
I believe a significant factor here is that I am an athletic male, in very good shape and I regularly hike and bike quite strenuous routes in the mountains near my home. I'm not sure if he thinks being in good shape would help me handle the therapy well or if an accident while biking or hiking could be problematic.
Any thoughts would be appreciated. If you need more information, please let me know. I have all the lab results.
NOTE: Next week I have an appointment with a blood and bone marrow transplant specialist to discuss my diagnosis and the various options.
Forums
8 posts
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chinook9 - Name: Brian
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 8/2008 SMM 6/2011
- Age at diagnosis: 65
Re: Starting Therapy: Maybe?
I too am in Smoldering Remission and have been for 2 and 1/2 years. I have had no maintenance treatement during this time frame. I just got tested and still in SM and I have not had a Stem Cell Transplant.
With the guidance of the Professionals, I made the decision to allow them to monitor me closely without a maintenance program in place. I feel fortunate, so far, so good.decision, Good Luck with your decision.
With the guidance of the Professionals, I made the decision to allow them to monitor me closely without a maintenance program in place. I feel fortunate, so far, so good.decision, Good Luck with your decision.
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dw0040
Re: Starting Therapy: Maybe?
dw0040 wrote:
> I too am in Smoldering Remission and have been for 2 and 1/2 years. I
> have had no maintenance treatement during this time frame. I just got
> tested and still in SM and I have not had a Stem Cell Transplant.
>
> With the guidance of the Professionals, I made the decision to allow them
> to monitor me closely without a maintenance program in place. I feel
> fortunate, so far, so good.decision, Good Luck with your decision.
Good to hear that you're still in remission.
Have you undergone therapy? If so, what did you have?
> I too am in Smoldering Remission and have been for 2 and 1/2 years. I
> have had no maintenance treatement during this time frame. I just got
> tested and still in SM and I have not had a Stem Cell Transplant.
>
> With the guidance of the Professionals, I made the decision to allow them
> to monitor me closely without a maintenance program in place. I feel
> fortunate, so far, so good.decision, Good Luck with your decision.
Good to hear that you're still in remission.
Have you undergone therapy? If so, what did you have?
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chinook9 - Name: Brian
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 8/2008 SMM 6/2011
- Age at diagnosis: 65
Re: Starting Therapy: Maybe?
I had no therapy at all....multiple myeloma responded well to the six months of chemo and after that, the Professionals determined to restest me every 3 months without a maintenance program. As mentioned 2 and 1/2 years later, I continue to be in Smoldering Remission with no assistance. 
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dw0040
Re: Starting Therapy: Maybe?
Hi Chinook,
Expert opinion in 2011 is that patients with smoldering myeloma should not be treated. Chemotherapy and/or radiation are not indicated for SMM. There are a number of research studies looking at the utility of treating patients with smoldering (asymptomatic) myeloma but as of now there is no conclusive evidence that patients will benefit.
One must remember that there are no truly "safe" drugs for myeloma. All of them can have major and even fatal complications. Therefore it is critical that well done research studies clearly show that the risk to benefit ratio is in favor of treatment. As of 2011 that question has not been answered for the treatment of SMM.
Although I do not have all of the details of your case I must state that if you do not have "CRAB"
.......you should not be treated.
Expert opinion in 2011 is that patients with smoldering myeloma should not be treated. Chemotherapy and/or radiation are not indicated for SMM. There are a number of research studies looking at the utility of treating patients with smoldering (asymptomatic) myeloma but as of now there is no conclusive evidence that patients will benefit.
One must remember that there are no truly "safe" drugs for myeloma. All of them can have major and even fatal complications. Therefore it is critical that well done research studies clearly show that the risk to benefit ratio is in favor of treatment. As of 2011 that question has not been answered for the treatment of SMM.
Although I do not have all of the details of your case I must state that if you do not have "CRAB"
.......you should not be treated.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Starting Therapy: Maybe?
Hi Chinook, Why don't you contact the NIH (National Institutes of Health). The myeloma section there is phenomenal and the doctor, Ola Landgren, is one of the world's leading experts on myeloma. He is currently studying the natural progression of myeloma from MGUS, etc. It's free and they will fully evaluate you periodically with the latest techniques. I am in the study and I have been treated like a VIP and closely monitored. I have high risk SMM. They even reimburse travel expenses.
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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: Starting Therapy: Maybe?
Dr. Libby:
Thank you very much for your input. Based on what you indicated, I expect the specialist I am meeting with on the 8th may say the same thing. I expect I have been making making some assumptions that may not be true. We'll see.
terryl1
Thank you for the recommendation to participate in the study. It was very easy to find information on the study. I will call the Research Nurse at NIH today to determine if I meet the criteria. If I do then I'll research the pros and cons of participation in such a study and go from there.
I will post back to this thread when decisions are made.
Thanks again!
Thank you very much for your input. Based on what you indicated, I expect the specialist I am meeting with on the 8th may say the same thing. I expect I have been making making some assumptions that may not be true. We'll see.
terryl1
Thank you for the recommendation to participate in the study. It was very easy to find information on the study. I will call the Research Nurse at NIH today to determine if I meet the criteria. If I do then I'll research the pros and cons of participation in such a study and go from there.
I will post back to this thread when decisions are made.
Thanks again!
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chinook9 - Name: Brian
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 8/2008 SMM 6/2011
- Age at diagnosis: 65
Re: Starting Therapy: Maybe?
I met with the "specialist" and agreed I would not start therapy.
I previously had posted additional information and a question here, however, I decided it would be better to start another thread which I have done.
I previously had posted additional information and a question here, however, I decided it would be better to start another thread which I have done.
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chinook9 - Name: Brian
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 8/2008 SMM 6/2011
- Age at diagnosis: 65
8 posts
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