Hi,
I was diagnosed with a solitary plasmacytoma in December 2014 and had radiation. Since then I go for labs every 3 months. Unfortunately a new lesion has been discovered on my clavicle, yet my blood work still is good.
Does anyone have experience with a second plasmacytoma? And what treatment was given if the blood work was not yet meeting the criteria for myeloma?
Thanks in advance!!
Denise
Forums
Re: New bone lesion after solitary plasmacytoma
Hi Denise,
I'm sorry for the bad news of the second lesion.
Has your hematologist mentioned anything about nonsecretory multiple myeloma or oligosecretory myeloma?
My dad had one large lesion removed from his vertebra. He was treated with radiation as well. Unfortunately, two or three other spots were found on his spine with a PET, with a slightly high light chain ratio. He went from a solitary plasmacytoma diagnosis to a multiple myeloma diagnosis and was treated with Velcade, cyclophosphamide, and dexamethasone (CyBorD). He has achieved a complete response.
From what I've read, there is a bit of a debate among hematologists whether a second plasmacytoma is grounds on it's own to change the diagnosis from solitary plasmacytoma to multiple myeloma.
I'm sorry for the bad news of the second lesion.
Has your hematologist mentioned anything about nonsecretory multiple myeloma or oligosecretory myeloma?
My dad had one large lesion removed from his vertebra. He was treated with radiation as well. Unfortunately, two or three other spots were found on his spine with a PET, with a slightly high light chain ratio. He went from a solitary plasmacytoma diagnosis to a multiple myeloma diagnosis and was treated with Velcade, cyclophosphamide, and dexamethasone (CyBorD). He has achieved a complete response.
From what I've read, there is a bit of a debate among hematologists whether a second plasmacytoma is grounds on it's own to change the diagnosis from solitary plasmacytoma to multiple myeloma.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: New bone lesion after solitary plasmacytoma
Hey NYMom,
I'm just wrestling with a very similar problem and getting lots of prodding and poking from specialists to work out what is happening. I had a major solitary plasmacytoma in my sacrum last year (8 cm x 6 cm x 6 cm) (3.1 in x 2.4 in x 2.4 in). I had radiotherapy in October 15 and my lambda light chain counts dropped from being in the 170's to below 20 after 3 months (well within the reference range - kappa light chains were always within the reference range).
Everybody thought this meant that the disease would be quiet for at least a while. However, a recent PET detected a 1 cm (0.4 in) lesion in my skull that has been biopsied and found to contain "some" plasma cells. The flow cytometry was only 2% plasma cells, but the doctor said that they found "sheets" of plasma cells in the histology. He found that significant, but haven't got a clue why.
Interestingly, the doctor that performed the biopsy took the rather strange step of telling me that he was almost certain that it was going to be benign because it responded just like a lacuna and didn't look at all like an active lesion to him. One question that I don't have answers to yet is what is the difference between a lacuna with a few plasma cells and active plasmacytoma.
My doctor is talking about nonsecretory myeloma just as Little Monkey suggested. I'm not sure if this makes sense for me because just 6 months ago, my disease was clearly secretory. Whilst I appreciate that diseases change their characteristics over time, this doesn't feel like the right explanation to me. I'm going to have to go away and do some research on "oligosecretory" as that is absolutely brand new to me.
When I had my initial diagnosis, the doctor was surprised to find that my tumor biopsy and my plain old bone marrow biopsy had two different disease lines. My tumor was lambda and my bone marrow biopsy (0.5% plasma cells) was kappa. Effectively, the doctors think that I may have this disease twice.
Personally, I think that maybe I have developed a lesion from the second disease line which would explain why I have an extra lesion, but all my blood work looks almost perfect (slightly low WBC - 3.0 and low B12, but ordinary active B12 - everything else within reference range or better). The doctor here is running some more tests on the sample to see how that theory stacks up. I'll get the results in about a week.
I don't know if you feel as confused as I do, but you have all my empathy. It's a hard process to go through. Everyone's experience of the disease seems to be unique, but this seems to be a bit "out there" even for myeloma! I'm getting lots of unwanted practice in "going with the flow" and not living for the next test and results. My disease doesn't seem to be in a rush at the moment and neither am I.
I'm currently waiting on results of a bone marrow biopsy on my sternum – which was a new experience! Depending on what that shows, we're going to work out the next treatment steps. I'm going to get at least one more specialist opinion before making any decision. It's hard to know whether to follow aggressive or minimal treatment protocols. Most doctors here in Australia follow the middle way between the extremes, and I'm not entirely happy about that course of action either! I guess that I'd prefer it if someone came up with a cure
Sorry I can't be of any more concrete assistance, but I'm walking a similar path. I'll keep you posted if anything more useful comes up. Please let me know how you go too.
Best of luck
I'm just wrestling with a very similar problem and getting lots of prodding and poking from specialists to work out what is happening. I had a major solitary plasmacytoma in my sacrum last year (8 cm x 6 cm x 6 cm) (3.1 in x 2.4 in x 2.4 in). I had radiotherapy in October 15 and my lambda light chain counts dropped from being in the 170's to below 20 after 3 months (well within the reference range - kappa light chains were always within the reference range).
Everybody thought this meant that the disease would be quiet for at least a while. However, a recent PET detected a 1 cm (0.4 in) lesion in my skull that has been biopsied and found to contain "some" plasma cells. The flow cytometry was only 2% plasma cells, but the doctor said that they found "sheets" of plasma cells in the histology. He found that significant, but haven't got a clue why.
Interestingly, the doctor that performed the biopsy took the rather strange step of telling me that he was almost certain that it was going to be benign because it responded just like a lacuna and didn't look at all like an active lesion to him. One question that I don't have answers to yet is what is the difference between a lacuna with a few plasma cells and active plasmacytoma.
My doctor is talking about nonsecretory myeloma just as Little Monkey suggested. I'm not sure if this makes sense for me because just 6 months ago, my disease was clearly secretory. Whilst I appreciate that diseases change their characteristics over time, this doesn't feel like the right explanation to me. I'm going to have to go away and do some research on "oligosecretory" as that is absolutely brand new to me.
When I had my initial diagnosis, the doctor was surprised to find that my tumor biopsy and my plain old bone marrow biopsy had two different disease lines. My tumor was lambda and my bone marrow biopsy (0.5% plasma cells) was kappa. Effectively, the doctors think that I may have this disease twice.
Personally, I think that maybe I have developed a lesion from the second disease line which would explain why I have an extra lesion, but all my blood work looks almost perfect (slightly low WBC - 3.0 and low B12, but ordinary active B12 - everything else within reference range or better). The doctor here is running some more tests on the sample to see how that theory stacks up. I'll get the results in about a week.
I don't know if you feel as confused as I do, but you have all my empathy. It's a hard process to go through. Everyone's experience of the disease seems to be unique, but this seems to be a bit "out there" even for myeloma! I'm getting lots of unwanted practice in "going with the flow" and not living for the next test and results. My disease doesn't seem to be in a rush at the moment and neither am I.
I'm currently waiting on results of a bone marrow biopsy on my sternum – which was a new experience! Depending on what that shows, we're going to work out the next treatment steps. I'm going to get at least one more specialist opinion before making any decision. It's hard to know whether to follow aggressive or minimal treatment protocols. Most doctors here in Australia follow the middle way between the extremes, and I'm not entirely happy about that course of action either! I guess that I'd prefer it if someone came up with a cure
Sorry I can't be of any more concrete assistance, but I'm walking a similar path. I'll keep you posted if anything more useful comes up. Please let me know how you go too.
Best of luck
-
Trae - Name: Trae
- Who do you know with myeloma?: me (plasmacytoma with MGUS)
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 43
Re: New bone lesion after solitary plasmacytoma
Hi Nymom,
Just in case it's relevant to you, I'm posting about some results that have made things more confusing rather than less. Sorry about that. I'm actually pretty happy about it at this point, because I figure that uncertainty leaves more room for positive outcomes than certainty at this point. Time will tell.
As a follow up to the discovery of my skull lesion, I had a sternum biopsy (my pelvis bone marrow biopsy from 12 months ago showed 0.5% clonal plasma cells, but my pelvic bone marrow is currently toast after the radiotherapy). Results show 0% plasma cells on either histology or flow cytometry. Excellent news - probably. But confusing.
Just to add to the confusion, the new skull lesion had some extra histology run on it. The lab couldn't prove that the plasma cells were clonal. Everybody is now scratching their heads about what this means. My original plasmacytoma was lambda restricted. The 0.5% in the bone marrow biopsy were kappa restricted. Now it seems in this lesion the plasma cells were neither. Tentatively, the docs are talking about plasmacytosis rather than a plasmacytoma. I have no idea what this might mean at this point. If anyone could shed some light, it would be greatly appreciated.
All other relevant bloodwork is in normal ranges, except still very slightly low WBC (3.9). My lambda light chains, which were up around 170 before the plasmacytoma was irradiated last year, are still below 20 as are my kappa light chains. The 24-hour urine test picked up very, very slightly elevated protein in urine, about double the reference range, but still very small numbers. This wasn't Bence Jones, just unspecified protein.
The hematologist thinks that my disease has "evolved" following the radiotherapy and is now fully nonsecretory. This doesn't sound right to me, though I acknowledge that it is a possibility. I was favouring a second disease line as an explanation, but now I'm not sure.
Does anybody on here have any thoughts as to what on earth might be going on? This time last week I had a myeloma diagnosis. Not what I wanted, of course, but I could at least start planning a new direction to life. The only certainty that I have at this point is that I will be getting an expert second opinion from a full time myeloma doc in Sydney.
Any comments would be greatly appreciated.
Just in case it's relevant to you, I'm posting about some results that have made things more confusing rather than less. Sorry about that. I'm actually pretty happy about it at this point, because I figure that uncertainty leaves more room for positive outcomes than certainty at this point. Time will tell.
As a follow up to the discovery of my skull lesion, I had a sternum biopsy (my pelvis bone marrow biopsy from 12 months ago showed 0.5% clonal plasma cells, but my pelvic bone marrow is currently toast after the radiotherapy). Results show 0% plasma cells on either histology or flow cytometry. Excellent news - probably. But confusing.
Just to add to the confusion, the new skull lesion had some extra histology run on it. The lab couldn't prove that the plasma cells were clonal. Everybody is now scratching their heads about what this means. My original plasmacytoma was lambda restricted. The 0.5% in the bone marrow biopsy were kappa restricted. Now it seems in this lesion the plasma cells were neither. Tentatively, the docs are talking about plasmacytosis rather than a plasmacytoma. I have no idea what this might mean at this point. If anyone could shed some light, it would be greatly appreciated.
All other relevant bloodwork is in normal ranges, except still very slightly low WBC (3.9). My lambda light chains, which were up around 170 before the plasmacytoma was irradiated last year, are still below 20 as are my kappa light chains. The 24-hour urine test picked up very, very slightly elevated protein in urine, about double the reference range, but still very small numbers. This wasn't Bence Jones, just unspecified protein.
The hematologist thinks that my disease has "evolved" following the radiotherapy and is now fully nonsecretory. This doesn't sound right to me, though I acknowledge that it is a possibility. I was favouring a second disease line as an explanation, but now I'm not sure.
Does anybody on here have any thoughts as to what on earth might be going on? This time last week I had a myeloma diagnosis. Not what I wanted, of course, but I could at least start planning a new direction to life. The only certainty that I have at this point is that I will be getting an expert second opinion from a full time myeloma doc in Sydney.
Any comments would be greatly appreciated.
-
Trae - Name: Trae
- Who do you know with myeloma?: me (plasmacytoma with MGUS)
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 43
Re: New bone lesion after solitary plasmacytoma
Trae,
If you were nonsecretory, I would think that you would still have a bone marrow plasma cell percentage reading above 0%, especially if you were developing plasmacytomas due to the multiple myeloma (although I suppose you could have had a dry tap on your most recent bone marrow biopsy). But I'm not a doctor.
But it's also curious that your recent plasmacytoma biopsy yielded no clonal cells. I can therefore see why you might be thinking that there is some secondary disease that might be in play here. Did the doctors offer any explanation for the potential cause of plasmacytosis (TB, pneumonia, etc)?
In any case, it's good you are getting a second opinion. Let us know what happens.
If you were nonsecretory, I would think that you would still have a bone marrow plasma cell percentage reading above 0%, especially if you were developing plasmacytomas due to the multiple myeloma (although I suppose you could have had a dry tap on your most recent bone marrow biopsy). But I'm not a doctor.
But it's also curious that your recent plasmacytoma biopsy yielded no clonal cells. I can therefore see why you might be thinking that there is some secondary disease that might be in play here. Did the doctors offer any explanation for the potential cause of plasmacytosis (TB, pneumonia, etc)?
In any case, it's good you are getting a second opinion. Let us know what happens.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New bone lesion after solitary plasmacytoma
Trae,
I just recalled a good commentary by Dr. Siegel that may apply (at least in part) to your situation.
I just recalled a good commentary by Dr. Siegel that may apply (at least in part) to your situation.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New bone lesion after solitary plasmacytoma
Wow, Multibilly. You have an absolutely archival memory of old threads here. Are you plugged directly into the server?
That's a great link, thanks. I think that the line "Often in a newly diagnosed multiple myeloma pt the tumor cells will look like normal healthy plasma cells" might be particularly relevant to me and the results coming back at this moment.
The lesion is tiny and probably pretty new. It is slightly destructive of the bone already though, so something not particularly great is happening. Interesting that the doctor that performed the biopsy was so sure that it wasn't a tumour he told me it was going to be clear as soon as he had the needle out of my head. He was an experienced guy (even if he shouldn't really have voiced his opinions without the actual results) and so something slightly bizarre is happening. As I said before, he felt it was a lacunae (sp?) based on the MRI images, the PET and the results of sticking a needle into it.
I don't think we hit a disease free pocket - I had a similar result from my hip last year, so we have at least two spots without signs of BM involvement. The chances of disease free pockets being the cause are getting slimmer.
The doctor couldn't offer any other explanation for the plasmacytosis. He did see me grinning as I thought that I might just have wriggled off of the hook of a myeloma diagnosis and cautioned me in very stern terms that not knowing what this was wasn't actually good news. For me, at this stage, unconfirmed is fine. It still leaves room for wriggling and that will do!
The bit that confuses me is how I can (probably) have effectively zero bone marrow involvement. I thought that even if your disease was nonsecretory, it should be detectable through clonal bone marrow involvement in a biopsy. Unless I've produced another "solitary" plasmacytoma, I don't quite follow how that works. Am I missing something?
That's a great link, thanks. I think that the line "Often in a newly diagnosed multiple myeloma pt the tumor cells will look like normal healthy plasma cells" might be particularly relevant to me and the results coming back at this moment.
The lesion is tiny and probably pretty new. It is slightly destructive of the bone already though, so something not particularly great is happening. Interesting that the doctor that performed the biopsy was so sure that it wasn't a tumour he told me it was going to be clear as soon as he had the needle out of my head. He was an experienced guy (even if he shouldn't really have voiced his opinions without the actual results) and so something slightly bizarre is happening. As I said before, he felt it was a lacunae (sp?) based on the MRI images, the PET and the results of sticking a needle into it.
I don't think we hit a disease free pocket - I had a similar result from my hip last year, so we have at least two spots without signs of BM involvement. The chances of disease free pockets being the cause are getting slimmer.
The doctor couldn't offer any other explanation for the plasmacytosis. He did see me grinning as I thought that I might just have wriggled off of the hook of a myeloma diagnosis and cautioned me in very stern terms that not knowing what this was wasn't actually good news. For me, at this stage, unconfirmed is fine. It still leaves room for wriggling and that will do!
The bit that confuses me is how I can (probably) have effectively zero bone marrow involvement. I thought that even if your disease was nonsecretory, it should be detectable through clonal bone marrow involvement in a biopsy. Unless I've produced another "solitary" plasmacytoma, I don't quite follow how that works. Am I missing something?
-
Trae - Name: Trae
- Who do you know with myeloma?: me (plasmacytoma with MGUS)
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 43
Re: New bone lesion after solitary plasmacytoma
Trae,
Well, I think Dr. Siegel said it well in his statement:
It would seem that once myeloma has gained a foothold in the body in the form of a plasmacytoma, that it can continue to evolve and cause problems in the future, regardless of what may be happening in the bone marrow and one's resulting biological / tumor markers.
I don't pretend to understand the biology of this kind of occurrence at all. But it does beg one to be vigilant and get appropriately imaged even when they think they are in the clear.
Well, I think Dr. Siegel said it well in his statement:
[Patients] can have a local plasmacytoma that causes great harm with a bone marrow and tumor markers that are entirely negative. Sometimes when we treat multiple myeloma we will kill the diffuse disease but the local plasmacytoma will be more resistant and continue to grow, or progress more rapidly than the rest of the disease as we see a relapse.
It would seem that once myeloma has gained a foothold in the body in the form of a plasmacytoma, that it can continue to evolve and cause problems in the future, regardless of what may be happening in the bone marrow and one's resulting biological / tumor markers.
I don't pretend to understand the biology of this kind of occurrence at all. But it does beg one to be vigilant and get appropriately imaged even when they think they are in the clear.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New bone lesion after solitary plasmacytoma
Multibilly,
Yeah, that makes sense - effectively a bone-focused disease with few or no other markers. Certainly could be what's going on.
The fact that the lab couldn't prove whether the plasma cells in the lesion were clonal, plus the absence of any other disease markers, has me really scratching my head though. If a plasma cell is non-clonal and neither lambda nor kappa restricted, does that mean it is probably healthy?
The hematologist thinks that I'm going to start developing more and more tumours. That would be an unwelcome but conclusive answer.
I'll be off for a specialist opinion in Sydney over the next month or so. That might help. For now I guess it's just watching and waiting.
Thanks for your comments though. They're really appreciated.
Yeah, that makes sense - effectively a bone-focused disease with few or no other markers. Certainly could be what's going on.
The fact that the lab couldn't prove whether the plasma cells in the lesion were clonal, plus the absence of any other disease markers, has me really scratching my head though. If a plasma cell is non-clonal and neither lambda nor kappa restricted, does that mean it is probably healthy?
The hematologist thinks that I'm going to start developing more and more tumours. That would be an unwelcome but conclusive answer.
I'll be off for a specialist opinion in Sydney over the next month or so. That might help. For now I guess it's just watching and waiting.
Thanks for your comments though. They're really appreciated.
-
Trae - Name: Trae
- Who do you know with myeloma?: me (plasmacytoma with MGUS)
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 43
Re: New bone lesion after solitary plasmacytoma
Thank you for all the replies and helpful information!
Little Monkey, you are correct about the debate about how to treat me. My doctor said he feels radiation is the proper course of treatment so long as the bone marrow biopsy (scheduled tomorrow) shows less than 10% plasma cells. However, since this is less than 2 years after first plasmacytoma, he said some doctors he consulted with did suggest systemic treatment, but he said those were in the minority. I have a second opinion scheduled for Monday.
Trae, it does seem like there are similarities in out situations and thank you for sharing your story. I have learned much useful info reading your posts and Multibilly's input. I am assuming that the bone marrow biopsy will indicate if this is nonsecretory myeloma or a second plasmacytoma (which I hope). Please keep me updated on what course of treatment you go with. There's so much info to respond to, I need to re-read posts before commenting more!
Little Monkey, you are correct about the debate about how to treat me. My doctor said he feels radiation is the proper course of treatment so long as the bone marrow biopsy (scheduled tomorrow) shows less than 10% plasma cells. However, since this is less than 2 years after first plasmacytoma, he said some doctors he consulted with did suggest systemic treatment, but he said those were in the minority. I have a second opinion scheduled for Monday.
Trae, it does seem like there are similarities in out situations and thank you for sharing your story. I have learned much useful info reading your posts and Multibilly's input. I am assuming that the bone marrow biopsy will indicate if this is nonsecretory myeloma or a second plasmacytoma (which I hope). Please keep me updated on what course of treatment you go with. There's so much info to respond to, I need to re-read posts before commenting more!
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nymom - Who do you know with myeloma?: ME
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 43
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