My husband was diagnosed with Solitary Bone Plasmacytoma (SBP) in his spine last October. He is 38 years old.
While our radiologist oncologist is working under the direction of a specialist in Multiple Myeloma, we have not had the opportunity to see the specialist, and our radiologist oncologist, though very helpful, doesn't have much experience with it.
We've not been able to find much information regarding SBP online, and what we have found has differed in terms of the statistical likelihood for it to progress to multiple myeloma.
I've seen suggestions of 59% of people with SBP progressing, to almost all patients with SBP progressing to multiple myeloma at some point, and sometimes in as little as 18 months.
What I would like to know is as doctors, what is your experience of the likelihood of progression?
Also, we've read about supplementing to try and keep the multiple myeloma stable, but is there any suggestion that similar supplementing (curcumin, resveratrol etc) can stop the progression from happening?
Thank you in advance for any input you have on this subject.
Forums
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LeahD - Name: Leah
- Who do you know with myeloma?: My husband has SBP
- When were you/they diagnosed?: Octo 09
- Age at diagnosis: 38
Re: Solitary bone plasmacytoma
The general cited risk of progression to multiple myeloma is often 60-80%, partly related to patients dying from other causes before long term follow-up was possible. I tell my patients that plasmacytoma's are essentially myeloma cells in one spot on their body, the cure for myeloma is not radiation, and hence myeloma is inevitable. That said, the timing is critical. If myeloma is inevitable, but it's 20 years away, that's a big difference from myeloma is going to cause fracture or kidney disease sometime in the next 6 months.
There are no supplements available that can keep myeloma stable or prevent progression from MGUS (monoclonal gammopathy of undetermined significance) to smoldering myeloma to active myeloma. There is early data that obesity seems to increase the risk of myeloma and hence I recommend weight loss to get out of the obesity category -- weight loss decreases mortality from about all causes in the vast majority of U.S. citizens.
There are no supplements available that can keep myeloma stable or prevent progression from MGUS (monoclonal gammopathy of undetermined significance) to smoldering myeloma to active myeloma. There is early data that obesity seems to increase the risk of myeloma and hence I recommend weight loss to get out of the obesity category -- weight loss decreases mortality from about all causes in the vast majority of U.S. citizens.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Solitary bone plasmacytoma
Thank you for your response Dr. Hofmeister. I very much appreciate the information.
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LeahD - Name: Leah
- Who do you know with myeloma?: My husband has SBP
- When were you/they diagnosed?: Octo 09
- Age at diagnosis: 38
Re: Solitary bone plasmacytoma
Hi,
I was diagnosed multiple myeloma two years after having a solitary bone plasmacytoma in my spine at the age of 46.
I was hoping to beat the statistics but failed. Hope you will!
Shay
I was diagnosed multiple myeloma two years after having a solitary bone plasmacytoma in my spine at the age of 46.
I was hoping to beat the statistics but failed. Hope you will!
Shay
Re: Solitary bone plasmacytoma
I was diagnosed with a 5cm x 7cm solitary plasmacytoma exactly 5 years ago. I had radiation treatments and a decompressive laminectomy with tumor reduction. I have remained cancer free since September 2005.
Multiple myeloma may be inevitable at some point, but I live my life and don't wait for it to happen.
Good luck to you.
Multiple myeloma may be inevitable at some point, but I live my life and don't wait for it to happen.
Good luck to you.
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Sundayangel
Re: Solitary bone plasmacytoma
Thank you Shayt and Sundayangel. I appreciate the response. I'm very much hoping we can beat the odds.
At the moment, he's having blood tests every three months, and we're trying to be upbeat and positive and hold on to the fact that he's going to be fine.
On the other hand, with four children, I'm forced into examining the practicalities of every day life should things progress. It's tough some days, but good to hear from others who are facing the same things. Good luck to you both.
At the moment, he's having blood tests every three months, and we're trying to be upbeat and positive and hold on to the fact that he's going to be fine.
On the other hand, with four children, I'm forced into examining the practicalities of every day life should things progress. It's tough some days, but good to hear from others who are facing the same things. Good luck to you both.
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LeahD - Name: Leah
- Who do you know with myeloma?: My husband has SBP
- When were you/they diagnosed?: Octo 09
- Age at diagnosis: 38
Re: Solitary bone plasmacytoma
Hi, Leah,
I'm in a very similar situation as Hayden in that I had my solitary bone plasmacytoma irradiated and am now in 'watch and wait' mode. Also, I had a hour long consultation with Dr. Hofmeister in his Coumbus Ohio office prior to my radiation in March and he certainly makes it plain that he prefers a more aggressive approach to treating multiple myeloma. Maybe not as aggressive as the University of Arkansas folks with their tandem stem cell transplants, but nevertheless believes in two or three drug therapy to start.
I've also talked to half a dozen other hemoncs about solitary bone plasmacytoma and some of the others are much less inclined to dismiss the precision of radiation.
In short, within the multiple myeloma medical community, there are generally two schools of thought, or philosophies if you will, 1. go for the cure, or 2. go for sequential control. I would add that many multiple myeloma specialists are viewing drug therapy with novel agents to be of equal efficacy to stem cell transplants ... that is a change in medical disposition in just the last 8 to 10 months, it appears.
Hope some of this helps and that you and Hayden continue to be well.
Regards,
Steve
I'm in a very similar situation as Hayden in that I had my solitary bone plasmacytoma irradiated and am now in 'watch and wait' mode. Also, I had a hour long consultation with Dr. Hofmeister in his Coumbus Ohio office prior to my radiation in March and he certainly makes it plain that he prefers a more aggressive approach to treating multiple myeloma. Maybe not as aggressive as the University of Arkansas folks with their tandem stem cell transplants, but nevertheless believes in two or three drug therapy to start.
I've also talked to half a dozen other hemoncs about solitary bone plasmacytoma and some of the others are much less inclined to dismiss the precision of radiation.
In short, within the multiple myeloma medical community, there are generally two schools of thought, or philosophies if you will, 1. go for the cure, or 2. go for sequential control. I would add that many multiple myeloma specialists are viewing drug therapy with novel agents to be of equal efficacy to stem cell transplants ... that is a change in medical disposition in just the last 8 to 10 months, it appears.
Hope some of this helps and that you and Hayden continue to be well.
Regards,
Steve
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Steve
Re: Solitary bone plasmacytoma
Hey Steve,
Hayd is doing well, and I am glad to hear that you are having luck speaking to specialists. He is having blood tests every three months now, and will have a skeletal survey again in December. (because I asked for it)
I wish I could say we'd seen lots of specialists and heard lots of opinions, but the truth is, here in Edmonton, Alberta, Canada, you only get to see a specialist once you have multiple myeloma, and solitary bone plasmacytoma, as a related condition doesn't get you in to that category.
Had I not done lots of reading myself, I suspect our oncologist wouldn't even have told us about the possibility of progression to multiple myeloma, and as a radiologist oncologist, I don't actually think he's seen a lot of SBP. When I asked for Hayd to have a repeat MRI, after the completion of radiation treatment, they said they didn't usually do that, but agreed to let him have one. It was good that they did, as his vertebra had completely collapsed, and fragments were still pressing on his spinal cord.
They did a flex study and determined his spine looked fairly stable, but we are now waiting to see a neurologist. A stand in oncologist admitted that they are not used to dealing with someone of Hayd's age with this type of cancer, and it would seem with much older people, they don't bother much about their spinal damage as they may not be as active anyway.
I've been incredibly frustrated this last few weeks, we attended a multiple myeloma conference of sorts at the cancer centre, organised by the local multiple myeloma support group. During the session, there was a very short amount of time allocated to asking the local specialist questions. Another man with SBP asked about his chances of progression, and the specialist basically blew him off. He actually said he was lucky, most of the people in the room where dealing with multiple myeloma now, and it may be ten or fifteen years before he ever got it again. I suspect that man like us, was there to find out anything he could about the disease, as most pamphlets on multiple myeloma dedicate a passage or two to SBP and that is it.
I appreciate Hayden is lucky in that his cancer was found before he lost the use of his legs (just) and he's alive, and his bloods are now within normal ranges. There is absolutely no doubt he is lucky to not be dealing with multiple myeloma right now. On the other hand, he is 39 years old, concerned about his future and being here to see his children grow up etc, and unlike the multiple myeloma patients in the area, doesn't even get the opportunity to speak to a specialist in the disease. We have to rely on information we can find on the internet, which I am sure you found is fairly sparse.
While it may be that some people get to ten or fifteen years without progression, I've read cases of people who have progressed within 18 months. The lack of available information can be quite frightening at times.
I can't fault the staff who have taken care of Hayden, they have been wonderful, and the cancer centre itself is amazing, however, I can't help feeling there should be a way for SBP patients in the area to be given some information on their type of cancer, someone to guide us through the possibilities of progression etc. I know there are no certainties, but I feel like some information from someone with experience of the disease, who had seen other patients with SBP would have given us some relief, but it would appear the local specialist deems us too lucky to get that information.
My impression was that as SBP didn't fall within a category currently being studied here, it is uninteresting to them.
Hayd is doing well, and I am glad to hear that you are having luck speaking to specialists. He is having blood tests every three months now, and will have a skeletal survey again in December. (because I asked for it)
I wish I could say we'd seen lots of specialists and heard lots of opinions, but the truth is, here in Edmonton, Alberta, Canada, you only get to see a specialist once you have multiple myeloma, and solitary bone plasmacytoma, as a related condition doesn't get you in to that category.
Had I not done lots of reading myself, I suspect our oncologist wouldn't even have told us about the possibility of progression to multiple myeloma, and as a radiologist oncologist, I don't actually think he's seen a lot of SBP. When I asked for Hayd to have a repeat MRI, after the completion of radiation treatment, they said they didn't usually do that, but agreed to let him have one. It was good that they did, as his vertebra had completely collapsed, and fragments were still pressing on his spinal cord.
They did a flex study and determined his spine looked fairly stable, but we are now waiting to see a neurologist. A stand in oncologist admitted that they are not used to dealing with someone of Hayd's age with this type of cancer, and it would seem with much older people, they don't bother much about their spinal damage as they may not be as active anyway.
I've been incredibly frustrated this last few weeks, we attended a multiple myeloma conference of sorts at the cancer centre, organised by the local multiple myeloma support group. During the session, there was a very short amount of time allocated to asking the local specialist questions. Another man with SBP asked about his chances of progression, and the specialist basically blew him off. He actually said he was lucky, most of the people in the room where dealing with multiple myeloma now, and it may be ten or fifteen years before he ever got it again. I suspect that man like us, was there to find out anything he could about the disease, as most pamphlets on multiple myeloma dedicate a passage or two to SBP and that is it.
I appreciate Hayden is lucky in that his cancer was found before he lost the use of his legs (just) and he's alive, and his bloods are now within normal ranges. There is absolutely no doubt he is lucky to not be dealing with multiple myeloma right now. On the other hand, he is 39 years old, concerned about his future and being here to see his children grow up etc, and unlike the multiple myeloma patients in the area, doesn't even get the opportunity to speak to a specialist in the disease. We have to rely on information we can find on the internet, which I am sure you found is fairly sparse.
While it may be that some people get to ten or fifteen years without progression, I've read cases of people who have progressed within 18 months. The lack of available information can be quite frightening at times.
I can't fault the staff who have taken care of Hayden, they have been wonderful, and the cancer centre itself is amazing, however, I can't help feeling there should be a way for SBP patients in the area to be given some information on their type of cancer, someone to guide us through the possibilities of progression etc. I know there are no certainties, but I feel like some information from someone with experience of the disease, who had seen other patients with SBP would have given us some relief, but it would appear the local specialist deems us too lucky to get that information.
My impression was that as SBP didn't fall within a category currently being studied here, it is uninteresting to them.
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LeahD - Name: Leah
- Who do you know with myeloma?: My husband has SBP
- When were you/they diagnosed?: Octo 09
- Age at diagnosis: 38
Re: Solitary bone plasmacytoma
While I do not have a SBP I do have a enchondriod (ostolytic cyst) in my disatal femur on my left leg. It has been there for at least 2 years without causing problems. In the last 6 months i have had pain ranging from severe couldn't walk on leg to less severe. The last few days now has been getting more painful feels like a deep ache inside my left leg... and the whole leg hurts... down into my ankle. My blood work comes back all clear of any plasma protiens esp the M protien. But in 08 i had BC and was treated with surgery and chemo. I also have what appears to be lumps or some type of cysts on the inside of my left knee and it hurts sometimes to.
Any kind of help suggestions would be good they want me to see a rhumatologist in jan 11... could this be rhumatiod Arthritus??
Any kind of help suggestions would be good they want me to see a rhumatologist in jan 11... could this be rhumatiod Arthritus??
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Anonymous
Re: Solitary bone plasmacytoma
I wrote some yesterday but wanted to add a bit more... Last night while sleeping my knee seemed to just lockup and was very very painful to try to move it in any direction. I know i woke up and tried to roll over and just was able to say ow ow ow it hurt so bad. I think i had to use my arms to reach down and get it moved to a comfortable postion. I saw an orthopedic surgeon and was told by him that he could not / would not do a knee replacement as shots of steriod did not relive the pain. I also went to see the surgeon who did the mastectomy and he said to not let anyone do surgery on the knee... so how come have 2 surgeons said even though i have severe pain and getting worse that surgery is not an option...
I am about ready to ask about fentynal as pain control as the low dose oxycodone and the lodiderm patches are not keeping me comfortable. Thanks for help and or suggestions..
Can multiple myeloma be a non secreting type???
I am about ready to ask about fentynal as pain control as the low dose oxycodone and the lodiderm patches are not keeping me comfortable. Thanks for help and or suggestions..
Can multiple myeloma be a non secreting type???
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slee
25 posts
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