As per my Dad's results listed ahead, is it possible to have these few 'clonal plasma cells in the bone marrow , yet still be considered a Solitary Bone Plasmacytoma? Could it be a Solitary Bone Plasmacytoma and MGUS. Or is it Multiple Myeloma (Indolent)? What do you think anyone?...
2002:
SPE/IFE: IgG Kappa Monoclonal Spike
Paraprotein Quantitation - unknown
Quantitative IgG - 24 g/L (Normal 5 - 13)
DX: MGUS - monitored for 11 years.
April 2013:
SPE/IFE - IgG Kappa Monoclonal Spike
Paraprotein Quantitation - 7 g/L
Quantitative IgG - 18 g/L
Skeletal Survey - well circumscribed 4 cm x 3 cm lytic lesion, left scapula.
Image-guided Core Needle Bone Biopsy: CD 138+ CD56+ CD117+ Kappa+ IgG+ clonal plasma cell population (Ki 67 = 16%).
Bone Marrow Biospy - 3% (<5 %) 'clonal' plasma cells present with some smooth muscle infiltration (CT Scan of left scapula also, to confirm). Shoulder had been sore for over 5 years (scan in 2005 and 2008 showing nothing).
CRAB - normal calcium, normal renal function, not anemic, solitary bone lesion (listed above - left scapula).
Diagnosis: Solitary (bone) Plasmacytoma.
Treatment: Beginning targeted Radiation Therapy (RT) May 6, 2013 (4 weeks).
I am thinking/reasoning that, had a bone marrow been done in 2002, there would have been the same amount of 'clonal' plasma cells present at that time, since there was a diagnosis of MGUS - wouldn't they have had to be there?. After all, IgG is lower 11 years later. In other words, I am hoping that RT will clear up the pocket of plasma cells in (Plasmacytoma) in shoulder and MGUS will be all that remains (minimal amount in bone marrow and low level monoclonal gammopathy). Am I living in a fantasy or is this already Multiple Myeloma. If so, is further treatment necessary, I.e. Velcade? Please help!
Forums
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
georgia wrote:
> As per my Dad's results listed ahead, is it possible to have these few
> 'clonal plasma cells in the bone marrow , yet still be considered a
> Solitary Bone Plasmacytoma? Could it be a Solitary Bone Plasmacytoma and
> MGUS. Or is it Multiple Myeloma (Indolent)? What do you think anyone?...
Remember, most of us aren't docs here, so verify all this with yours.
See:
http://guideline.gov/content.aspx?id=15514
This appears to be often treated with just radiation, so just because you have some clonal plasma cells present doesn't automatically mean you do chemo as well.
But you need to be careful in making sure that no other bone lesions are present. Has your doc discussed a whole body PET/CT scan with you (wasn't sure from your report if a whole body PET/CT was done)? Xrays are by no means a definitive way to identify bone lesions and they can frequently miss lesions altogether (or can be interpreted to reveal lesions that aren't really there, which happened in my case). A recent finding by Dr. Landgren suggests that 30% of SMM patients he was screening for a trial ended up having bone lesions (and therefore were NOT SMM) that were revealed by PET/CT. Thx to the sleuthy Suzierose for surfacing this stat. See p 21 of
http://static9.light-kr.com/documents/IMW2013/Landgren%20-%20CRd%20Smoldering%20Myeloma.pdf
> As per my Dad's results listed ahead, is it possible to have these few
> 'clonal plasma cells in the bone marrow , yet still be considered a
> Solitary Bone Plasmacytoma? Could it be a Solitary Bone Plasmacytoma and
> MGUS. Or is it Multiple Myeloma (Indolent)? What do you think anyone?...
Remember, most of us aren't docs here, so verify all this with yours.
See:
http://guideline.gov/content.aspx?id=15514
This appears to be often treated with just radiation, so just because you have some clonal plasma cells present doesn't automatically mean you do chemo as well.
But you need to be careful in making sure that no other bone lesions are present. Has your doc discussed a whole body PET/CT scan with you (wasn't sure from your report if a whole body PET/CT was done)? Xrays are by no means a definitive way to identify bone lesions and they can frequently miss lesions altogether (or can be interpreted to reveal lesions that aren't really there, which happened in my case). A recent finding by Dr. Landgren suggests that 30% of SMM patients he was screening for a trial ended up having bone lesions (and therefore were NOT SMM) that were revealed by PET/CT. Thx to the sleuthy Suzierose for surfacing this stat. See p 21 of
http://static9.light-kr.com/documents/IMW2013/Landgren%20-%20CRd%20Smoldering%20Myeloma.pdf
Last edited by Multibilly on Sat May 04, 2013 6:34 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
Thank you, Multibilly, for replying! I greatly appreciate the knowledge that you have shared. My dad's Hem-Onc doctor had mentioned an MRI of the spine to have a closer look. Would that do? I guess I was wondering if it was significant that the plasma cells in the marrow are clonal. I thought they should be normal. Or is it that once there is an MGUS present, the plasma cells (all) are clonal. When I read about multiple myeloma, percentages are mentioned but not clonality. Is it assumed these percentages are clonal. Also, if there were a few small lesions found around the spine, could they radiate those also, or would it just be chemo? Thank you for helping me!
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
This is really confusing stuff, eh?
I was incorrect when I stated earlier that one couldn't have MGUS if you have SBP and I sincerely apologize for that.
With SBP, there can be situations where there are clonal cells in the bone marrow. Note that not all your plasma cells are clonal when you have this disease. Only the mutated (myeloma) cells are producing clones, which are faulty and not doing their job normally. These mutated cells have a different genetic makeup than your normal, healthy plasma cells....and there can also be multiple lines of faulty cells with different mutations.
It sounds like you may be interpreting things correctly in that he could have SBP with MGUS. I think that the following article will make things more clear for you. It also talks about the suggested imaging. I think I would personally want to play it safe and ask for a PET/CT to see if there are tumors anywhere else other than the pelvis and spine. There are tradeoffs for MRI versus PET/CT and you should discuss this with your doc. An MRI will give you a really good image and involves no radiation, but it is not practical for scanning the entire body. A PET/CT can cover your whole body and will graphically show you "uptakes" where there are cancerous tumors, but it does involve a fair amt of radiation.
https://myelomabeacon.org/news/2012/05/04/solitary-bone-plasmacytoma/
There are several great docs that monitor this site and hopefully one of them can also chime in.
I was incorrect when I stated earlier that one couldn't have MGUS if you have SBP and I sincerely apologize for that.
With SBP, there can be situations where there are clonal cells in the bone marrow. Note that not all your plasma cells are clonal when you have this disease. Only the mutated (myeloma) cells are producing clones, which are faulty and not doing their job normally. These mutated cells have a different genetic makeup than your normal, healthy plasma cells....and there can also be multiple lines of faulty cells with different mutations.
It sounds like you may be interpreting things correctly in that he could have SBP with MGUS. I think that the following article will make things more clear for you. It also talks about the suggested imaging. I think I would personally want to play it safe and ask for a PET/CT to see if there are tumors anywhere else other than the pelvis and spine. There are tradeoffs for MRI versus PET/CT and you should discuss this with your doc. An MRI will give you a really good image and involves no radiation, but it is not practical for scanning the entire body. A PET/CT can cover your whole body and will graphically show you "uptakes" where there are cancerous tumors, but it does involve a fair amt of radiation.
https://myelomabeacon.org/news/2012/05/04/solitary-bone-plasmacytoma/
There are several great docs that monitor this site and hopefully one of them can also chime in.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
Yes it is so confusing!
Thanks again for replying! I am glad to hear that you agree that it can be both and your references have been excellent sources of information!
I really appreciate knowing the difference between an MRI a PET/CT! We have an appointment Monday morning with Hem-Onc doc, followed with his first radiation treatment
Again thank you so much for helping. It touches my soul. Good luck to you and sorry to hear you were diagnosed with lesions that actually weren't there! Hope all is well!!
Thanks again for replying! I am glad to hear that you agree that it can be both and your references have been excellent sources of information!
I really appreciate knowing the difference between an MRI a PET/CT! We have an appointment Monday morning with Hem-Onc doc, followed with his first radiation treatment
Again thank you so much for helping. It touches my soul. Good luck to you and sorry to hear you were diagnosed with lesions that actually weren't there! Hope all is well!!
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
It is very interesting question. One the we debate as well. In the setting of a newly diagnosed plasmacytoma with staging identifying a small population of myeloma cells, i would consider definitive radiotherapy for a solitary plasmacytoma. Then follow-up every 3 months.
However, your father has had MGUS since 2002. So, I would be concerned about progression of disease to symptomatic disease. I think that really there are two options (and you might get different opinions from different myeloma experts) 1) remain conservative and watch after radiotherapy- so treat as a solitary plasmacytoma or 2) consider this a progression (the "B" in the CRAB-I symptoms - boney lytic lesion).
Personally, I would consider this progression of disease and initiate therapy (as well as radiotherapy).
I know this is difficult, but we want to ensure that your dad is safe and does not have further complications of bone disease (fracture) or other sequelea of organ damage.
However, your father has had MGUS since 2002. So, I would be concerned about progression of disease to symptomatic disease. I think that really there are two options (and you might get different opinions from different myeloma experts) 1) remain conservative and watch after radiotherapy- so treat as a solitary plasmacytoma or 2) consider this a progression (the "B" in the CRAB-I symptoms - boney lytic lesion).
Personally, I would consider this progression of disease and initiate therapy (as well as radiotherapy).
I know this is difficult, but we want to ensure that your dad is safe and does not have further complications of bone disease (fracture) or other sequelea of organ damage.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
Hi Dr Shain,
Thank you very much for taking the time to leave your very respected and greatly appreciated advice. You truly define my dilemma to a tee. Although I hope and pray that this is SBP, I don't want to bury my head in the sand and ignore what has been gnawing at me for months, which is 'progression'!
Interestingly, my father has complained of left shoulder pain for the past 30 years with the pain heightening over the past five to seven years. The length of time that this complaint has gone on, coupled with the fact that the only lytic lesion discovered on the skeletal survey was in the left scapula lends hope to what I think is the lesser of two evils - SBP (indolent?).
That being said, I agree with you that this may be the B in CRAB and that 'progression' may be what we are seeing. As I mentioned earlier, we are seeing the Hem-Onc physician tomorrow morning and I plan on discussing this rationale with her. God knows how patchy plasma cells can be in the bone marrow. We certainly would rather err on the side of caution and avoid end organ damage' etc. as much as possible!
Again I appreciate you more than I can say! God Bless!!
Thank you very much for taking the time to leave your very respected and greatly appreciated advice. You truly define my dilemma to a tee. Although I hope and pray that this is SBP, I don't want to bury my head in the sand and ignore what has been gnawing at me for months, which is 'progression'!
Interestingly, my father has complained of left shoulder pain for the past 30 years with the pain heightening over the past five to seven years. The length of time that this complaint has gone on, coupled with the fact that the only lytic lesion discovered on the skeletal survey was in the left scapula lends hope to what I think is the lesser of two evils - SBP (indolent?).
That being said, I agree with you that this may be the B in CRAB and that 'progression' may be what we are seeing. As I mentioned earlier, we are seeing the Hem-Onc physician tomorrow morning and I plan on discussing this rationale with her. God knows how patchy plasma cells can be in the bone marrow. We certainly would rather err on the side of caution and avoid end organ damage' etc. as much as possible!
Again I appreciate you more than I can say! God Bless!!
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
Dr. Shain,
When you say treat, are you able to say which drug combination you think would be best?
I just read the Beacon's great article about '"Spanish Expert Recomments Early Treatment for SMM (During the IMW, Dr. Mateos presented updated results from a study she and other Spanish researchers have been conducting, showing that Revlimid (lenalidomide) in combination with dexamethasone (Decadron) delays disease progression and improves overall survival in high-risk smoldering myeloma patients)" - April 26, 2013.
Do you agree that he needs a PET/CT? If so, when? - He starts radiation tomorrow. Should it wait until after his 4 week (weekdays only) regime?. Is it possible that he bone marrow could have always had these low counts of clonal plasma cells present had one been performed in years past? Lastly, briefly, what would the cons (pros also, if you have time) be with therapy (in addition to radiation)?
We are still waiting for results of Cytogenetic Studies from BM specimen. With counts that low (2.5% clonal plasma cells in bone marrow), would there even be enough to obtain a result?
Sorry - bombarded you with a lot of questions. I understand if you don't respond. I am sure you are a very busy man! My mind won't turn off.
Thanks, georgia
When you say treat, are you able to say which drug combination you think would be best?
I just read the Beacon's great article about '"Spanish Expert Recomments Early Treatment for SMM (During the IMW, Dr. Mateos presented updated results from a study she and other Spanish researchers have been conducting, showing that Revlimid (lenalidomide) in combination with dexamethasone (Decadron) delays disease progression and improves overall survival in high-risk smoldering myeloma patients)" - April 26, 2013.
Do you agree that he needs a PET/CT? If so, when? - He starts radiation tomorrow. Should it wait until after his 4 week (weekdays only) regime?. Is it possible that he bone marrow could have always had these low counts of clonal plasma cells present had one been performed in years past? Lastly, briefly, what would the cons (pros also, if you have time) be with therapy (in addition to radiation)?
We are still waiting for results of Cytogenetic Studies from BM specimen. With counts that low (2.5% clonal plasma cells in bone marrow), would there even be enough to obtain a result?
Sorry - bombarded you with a lot of questions. I understand if you don't respond. I am sure you are a very busy man! My mind won't turn off.
Thanks, georgia
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
My pleasure.
FISH is typically done by selecting the myeloma cells (so enriching). The low number should not (but can in cases) preclude getting results.
Therapy will depending on the FISH and final risk assessment.
I would recommend a PET/CT in your father's case. One could also consider and MRI of his spine, if there any question regarding involvement of his spine. Both will help identify lesions that are not picked up by bone survey alone. Although bone surveys are the "gold standard," the test is not perfect. You need to have ~30% bone destruction prior to the appearance of a lesion.
If there are additional lesions, then therapy for sure. I think that you can be a bit more conservation (consider close follow-up including imaging) as we discussed in previous post if this remains the only lesion.
FISH is typically done by selecting the myeloma cells (so enriching). The low number should not (but can in cases) preclude getting results.
Therapy will depending on the FISH and final risk assessment.
I would recommend a PET/CT in your father's case. One could also consider and MRI of his spine, if there any question regarding involvement of his spine. Both will help identify lesions that are not picked up by bone survey alone. Although bone surveys are the "gold standard," the test is not perfect. You need to have ~30% bone destruction prior to the appearance of a lesion.
If there are additional lesions, then therapy for sure. I think that you can be a bit more conservation (consider close follow-up including imaging) as we discussed in previous post if this remains the only lesion.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Solitary Plasmacytoma with MGUS or Multiple Myeloma
Morning Dr. Shain,
Thanks from the bottom of my heart. I will let you know how our appointment goes.
I hope you have a good day!
Thanks from the bottom of my heart. I will let you know how our appointment goes.
I hope you have a good day!
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
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