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Bone Pain And Smoldering Myeloma
Can a person with SMM have bone pain but no bone lesions that show up on a bone survey or PET scan?
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mso - Name: Mic
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2010
- Age at diagnosis: 53
Re: Bone Pain And Smoldering Myeloma
MSO
I have SMM and have had all negative imaging results. Although I have not had a PET Scan. I have Pain in my Ribs and Back. I have had Back pain for years due to a bad Disc. But this pain is in a different area and it has a different feeling. For the most part it comes and goes. Sometimes I wonder if its psychological?? My oncologist never seems concerned and has told me he only ordered imaging to ease my mind.
I hope this helps
Best Wishes
Art
I have SMM and have had all negative imaging results. Although I have not had a PET Scan. I have Pain in my Ribs and Back. I have had Back pain for years due to a bad Disc. But this pain is in a different area and it has a different feeling. For the most part it comes and goes. Sometimes I wonder if its psychological?? My oncologist never seems concerned and has told me he only ordered imaging to ease my mind.
I hope this helps
Best Wishes
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Bone Pain And Smoldering Myeloma
There is a debate as to whether SMM is a seperate catagory at all and whether or not people in this condition should be treated.
See the attached articles published in the Beacon.
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
https://myelomabeacon.org/news/2009/12/23/preemptive-treatment-benefits-high-risk-smoldering-myeloma-patients-study-finds-ash-2009/
This is an evolving area but it appears to me that there is a shift toward begining treatment sooner and doing away with SMM as a catagory - it would fall under Stage 1.
Ron
See the attached articles published in the Beacon.
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
https://myelomabeacon.org/news/2009/12/23/preemptive-treatment-benefits-high-risk-smoldering-myeloma-patients-study-finds-ash-2009/
This is an evolving area but it appears to me that there is a shift toward begining treatment sooner and doing away with SMM as a catagory - it would fall under Stage 1.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Bone Pain And Smoldering Myeloma
That might make sense if the drugs used to treat myeloma did not cause cancer or the current plethora of other nasty side effects that everybody seems to be plagued with on this site. Then again, what is a bit of leukemia on top of myeloma? Doesn't seem to have the oncologists up in arms - which it should.
It might also make sense if it was known that early treatment resulted in greater overall survival with a decent quality of life. There is no such conclusive evidence.
It might also make sense if we knew which patients might benefit from such early intervention versus those that can smolder for more than ten years with NO treatment.
All this negativity and cynicism aside, I do believe that elotuzumab and vaccines may be the best non-toxic path forward for such early treatment of SMM -- but we are not quite there yet. But I bet we will be there in a year or so.
It might also make sense if it was known that early treatment resulted in greater overall survival with a decent quality of life. There is no such conclusive evidence.
It might also make sense if we knew which patients might benefit from such early intervention versus those that can smolder for more than ten years with NO treatment.
All this negativity and cynicism aside, I do believe that elotuzumab and vaccines may be the best non-toxic path forward for such early treatment of SMM -- but we are not quite there yet. But I bet we will be there in a year or so.
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Ma Larkey
Re: Bone Pain And Smoldering Myeloma
I concur with you quite a bit Ma Larkey!!
While many of the side effects today from therapy are significantly less toxic thanks to new agents, and studies show they have responses comparable to hi-dose chemotherapy (aka ASCT), which would mean it would be better to hit multiple myeloma hard and early, just as they learned with HIV. The 64K dollar question is whether there is such a thing as pre-MM or it is just the initial stage and will progress. New diagnostic tests help predict those who will. Allowing them the choice to hit the disease hard and early and those who are far less likely to progress based on FLCA still have the option to wait and see. And or there is the MRI screening that is predictive of progression as well.
https://myelomabeacon.org/news/2010/03/15/bone-lesions-detected-by-mri-can-predict-progression-of-smoldering-myeloma/
Having said that ...
SPM data and the label changes tell us now those are a real high probability with IMID's vs 20 year incidence of SPM prior to IMID's becoming first line therapy.
Even though the data thus far on SPM's trends to 24 months being when SPM's from IMID's likely occur I am skeptical of maintenance therapy limited to less than 24 months given the established mechanism of action having been elucidated for IMID's causing SPM due to them being anti-angiogenic agents (VEGF inhibitor). A pathway that has clearly been established to result in more aggressive disease and metastasis in prostate, colon, and breast cancer. What that tells me is that the 24 month cutoff is a surrogate marker (not sensitive enough to detect) the early stages particularly as we know thalidomides' effects in the womb, (10month gestation) resulting in limb defects.
While many of the side effects today from therapy are significantly less toxic thanks to new agents, and studies show they have responses comparable to hi-dose chemotherapy (aka ASCT), which would mean it would be better to hit multiple myeloma hard and early, just as they learned with HIV. The 64K dollar question is whether there is such a thing as pre-MM or it is just the initial stage and will progress. New diagnostic tests help predict those who will. Allowing them the choice to hit the disease hard and early and those who are far less likely to progress based on FLCA still have the option to wait and see. And or there is the MRI screening that is predictive of progression as well.
https://myelomabeacon.org/news/2010/03/15/bone-lesions-detected-by-mri-can-predict-progression-of-smoldering-myeloma/
Having said that ...
SPM data and the label changes tell us now those are a real high probability with IMID's vs 20 year incidence of SPM prior to IMID's becoming first line therapy.
Even though the data thus far on SPM's trends to 24 months being when SPM's from IMID's likely occur I am skeptical of maintenance therapy limited to less than 24 months given the established mechanism of action having been elucidated for IMID's causing SPM due to them being anti-angiogenic agents (VEGF inhibitor). A pathway that has clearly been established to result in more aggressive disease and metastasis in prostate, colon, and breast cancer. What that tells me is that the 24 month cutoff is a surrogate marker (not sensitive enough to detect) the early stages particularly as we know thalidomides' effects in the womb, (10month gestation) resulting in limb defects.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Bone Pain And Smoldering Myeloma
Hi Ron!!
Point of fact as you suggested, they are beginning to categorize SMM as pre-malignant multiple myeloma.
Seems the DNA instability is present in SMM and that translocations and cytogentic changes occur over time.
the disease is simply insidious...building up all these chromosomal mutations so that it can thrive and survive in the bone marrow before you ever suspect anything is wrong.
This review article from British Medical Journal on molecular changes was just published in May 2012l:
http://mp.bmjjournals.com/content/55/5/273.full.pdf
Point of fact as you suggested, they are beginning to categorize SMM as pre-malignant multiple myeloma.
Seems the DNA instability is present in SMM and that translocations and cytogentic changes occur over time.
the disease is simply insidious...building up all these chromosomal mutations so that it can thrive and survive in the bone marrow before you ever suspect anything is wrong.
This review article from British Medical Journal on molecular changes was just published in May 2012l:
http://mp.bmjjournals.com/content/55/5/273.full.pdf
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Bone Pain And Smoldering Myeloma
Hello,
This is an important question and I thank you for bringing it up.
The short answer is yes. In this situation one must be suspicious that symptomatic multiple myeloma is occurring. In 2012 the best screening method for bony involvement in smoldering (asymptomatic)myeloma and symptomatic myeloma is full body MRI imaging ( sometimes called bone marrow MRI). CT and CT/PET imaging are not as sensitive to bone destruction from myeloma. It is especially true in SMM that if the skeletal survey (plain Xrays) is negative but the patient has bone symptoms then a full body (bone) MRI should be strongly considered.
This is an important question and I thank you for bringing it up.
The short answer is yes. In this situation one must be suspicious that symptomatic multiple myeloma is occurring. In 2012 the best screening method for bony involvement in smoldering (asymptomatic)myeloma and symptomatic myeloma is full body MRI imaging ( sometimes called bone marrow MRI). CT and CT/PET imaging are not as sensitive to bone destruction from myeloma. It is especially true in SMM that if the skeletal survey (plain Xrays) is negative but the patient has bone symptoms then a full body (bone) MRI should be strongly considered.
Last edited by Dr. Edward Libby on Sun May 06, 2012 4:46 pm, edited 1 time in total.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Bone Pain And Smoldering Myeloma
Thank you for the information, Dr. Libby. I have bone pain too and a neg. PET scan but my skeletal X-rays showed one possible lesion and a lot of arthritis. I think at my next exam for MGUS I may see if my doctor will get an MRI. If not her maybe my PCP who takes care of my arthritis. I am hoping that the MRI will be useful in my MGUS and also my arthritis to see how my joints are doing. This pain I have now in my shins and hips is way different from my past arthritis pain leading to bilat. joint replacements in my knees.
Praying for everyone on this site affected with multiple myeloma!
Toni
Praying for everyone on this site affected with multiple myeloma!
Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Bone Pain And Smoldering Myeloma
Dr. Edward Libby wrote:
> Hello,
> This is an important question and I thank you for bringing it up.
> The short answer is yes. In this situation one must be suspicious that
> symptomatic multiple myeloma is occurring. In 2012 the best screening
> method for bony involvement in smoldering (asymptomatic)myeloma and
> symptomatic myeloma is MRI imaging. CT and CT/PET imaging are not as
> sensitive to bone destruction from myeloma. It is especially true in SMM
> that if the skeletal survey (plain Xrays) is negative but the patient has
> bone symptoms an MRI should be strongly considered.
Thanks Dr. Ed.
Let's assume that we do a full body MRI that shows negative for leisions.
Can the pain that MSO is feeling in her rib areas be caused by the myeloma in her system?
She has had a solitary plasma cytoma in her t12. No kidney damage. current M spike is 2.5.
Dan
> Hello,
> This is an important question and I thank you for bringing it up.
> The short answer is yes. In this situation one must be suspicious that
> symptomatic multiple myeloma is occurring. In 2012 the best screening
> method for bony involvement in smoldering (asymptomatic)myeloma and
> symptomatic myeloma is MRI imaging. CT and CT/PET imaging are not as
> sensitive to bone destruction from myeloma. It is especially true in SMM
> that if the skeletal survey (plain Xrays) is negative but the patient has
> bone symptoms an MRI should be strongly considered.
Thanks Dr. Ed.
Let's assume that we do a full body MRI that shows negative for leisions.
Can the pain that MSO is feeling in her rib areas be caused by the myeloma in her system?
She has had a solitary plasma cytoma in her t12. No kidney damage. current M spike is 2.5.
Dan
Re: Bone Pain And Smoldering Myeloma
Hi Dan...it's good of you to be so concerned about rib pain for your wIfe...i just wanted to share that did pass right thru the smoldering phase of multiple myeloma without recognizing it as such. I did have rib pain the year leading up to my dx. I attributed it to any number of reasons, especially gardening or my pilates class! Luckily never have had any noticeable rib fractures, but one of my vertebrae in that region did fracture. However, and this is what I would like you both to know, is that after all the treatments I have received, and now that my myeloma is 'inactive', I no longer have rib pain! I didn't really expect that to happen...so it was a bonus of treatment. I wonder if other people have had that same experience?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
24 posts
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