Has anyone experience with having severe curvature of the spine / scoliosis, before multiple myeloma ever hit them, with many multiple myeloma lesions in the spine / bones and also renal disease, and then undergoing chemotherapy with a stem cell transplant?
If so, what was the experience?
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Re: Scoliosis, spinal lesions & renal disease - and then SCT
Hi Edna,
Well, I experienced 2 spinal fractures that required kyphoplasty to somewhat correct them. The fractures caused compression of my spinal chord, which put me in a wheelchair for a few months and now requires me to use a walker. So, yes, my spine is still a bit curved.
I would suspect something going on that you should have further evaluated to determine the issue. It wouldn't hurt to ask your hemo/onco doc to refer you to an interventional radiologist to evaluate you. It is possible that a kyphoplasty or vertebroplasty may help if the vertebrae are collapsed on one side or both sides due to lesions or fractured areas.
It is well worth the effort to catch this early in order to try to minimize the damage and further collapse that might impinge upon the nerve.
I'm not sure I understand the second part of your question, since chemotherapy drugs are typically used prior and during the auto stem cell transplant protocol. For me, they used a high dose of melphalan as part of the protocol to wipe my system clean prior to giving me back my stem cells. Other than nausea and a little loose bowel issue, all went well and I am in complete remission now.
Prior to that, I received Velcade, Revlimid and Cytoxan all chemotherapy agents I believe. I have had no issue with those.
Hope this helps,
BN
Well, I experienced 2 spinal fractures that required kyphoplasty to somewhat correct them. The fractures caused compression of my spinal chord, which put me in a wheelchair for a few months and now requires me to use a walker. So, yes, my spine is still a bit curved.
I would suspect something going on that you should have further evaluated to determine the issue. It wouldn't hurt to ask your hemo/onco doc to refer you to an interventional radiologist to evaluate you. It is possible that a kyphoplasty or vertebroplasty may help if the vertebrae are collapsed on one side or both sides due to lesions or fractured areas.
It is well worth the effort to catch this early in order to try to minimize the damage and further collapse that might impinge upon the nerve.
I'm not sure I understand the second part of your question, since chemotherapy drugs are typically used prior and during the auto stem cell transplant protocol. For me, they used a high dose of melphalan as part of the protocol to wipe my system clean prior to giving me back my stem cells. Other than nausea and a little loose bowel issue, all went well and I am in complete remission now.
Prior to that, I received Velcade, Revlimid and Cytoxan all chemotherapy agents I believe. I have had no issue with those.
Hope this helps,
BN
-
Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Scoliosis, spinal lesions & renal disease - and then SCT
Hello BN
Sorry about your experience with your spine - not sadly an uncommon problem for MMers.
What I am asking is not about bent spines that develop from the myeloma bone disease. I am trying to get some experiences of people who had severe curvature / scoliosis long before they developed multiple myeloma, and if these people had high-dose therapy (HDT) and stem cell transplantation (SCT), whether there were problems from this. I am particularly interested in those whose renal function was also impaired prior to transplant.
There will not likely be more than a handful of such patients, but the pre-existing scoliosis thoracic curve and lower renal function would be co-morbidities which could put them at greater risk of developing more problems during HDT/SCT.
Hope this clarifies.
Edna
Sorry about your experience with your spine - not sadly an uncommon problem for MMers.
What I am asking is not about bent spines that develop from the myeloma bone disease. I am trying to get some experiences of people who had severe curvature / scoliosis long before they developed multiple myeloma, and if these people had high-dose therapy (HDT) and stem cell transplantation (SCT), whether there were problems from this. I am particularly interested in those whose renal function was also impaired prior to transplant.
There will not likely be more than a handful of such patients, but the pre-existing scoliosis thoracic curve and lower renal function would be co-morbidities which could put them at greater risk of developing more problems during HDT/SCT.
Hope this clarifies.
Edna
Re: Scoliosis, spinal lesions & renal disease - and then SCT
Edna-
I'm sorry that I can't answer your question that you've asked. But, a couple of things that might be of concern for the transplant are your lung function and your cardiac status. As I'm sure you know, these both can be compromised by severe curvatures of the spine. Both of these things are evaluated as part of the pre-testing before you are approved for going forward with the transplant process. Many people have transplants with at-risk kidneys. Again, I'm sure that this is something that would be evaluated in your case.
Have you asked these questions of the transplant doctor or of your oncologist?
Nancy in Phila
I'm sorry that I can't answer your question that you've asked. But, a couple of things that might be of concern for the transplant are your lung function and your cardiac status. As I'm sure you know, these both can be compromised by severe curvatures of the spine. Both of these things are evaluated as part of the pre-testing before you are approved for going forward with the transplant process. Many people have transplants with at-risk kidneys. Again, I'm sure that this is something that would be evaluated in your case.
Have you asked these questions of the transplant doctor or of your oncologist?
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Scoliosis, spinal lesions & renal disease - and then SCT
Hi Nancy,
Yes, I know of all you mention, and the transplant doctor has also given the higher mortality risk odds from undertaking a transplant and has not pulled any punches.
But, without knowing if anyone has gone through HDT / ASCT and their experiences, all there is is a theoretical risk scenario, of which I was already fully aware.
I note some on the Beacon site have not had transplants. There is no published information I can find in the advent of novel drug regimens of ongoing treatments and their tolerability as well as overall survival data of not so very old people who do not have stem cell transplants.
Also, ASCT is often preferred as it provides a drug-free period (although now with maintenance regimens being introduced, this is changing) and supposedly a longer progression-free survival period (again, not everyone has this, and some relapse very quickly after transplant – data often does not show the proportions of people who relapse at particular periods, just median survival data).
My own assessment is that the very much younger multiple myeloma sufferers, i.e. less than 55 years of age, actually appear to benefit most from HDT/ASCT or other transplants as to long survival with reasonable quality of life.
So my query was to try and get not a theoretical angle, which I have already, but someone's experience after transplant, with these conditions prior to HDT/ASCT.
Edna
Yes, I know of all you mention, and the transplant doctor has also given the higher mortality risk odds from undertaking a transplant and has not pulled any punches.
But, without knowing if anyone has gone through HDT / ASCT and their experiences, all there is is a theoretical risk scenario, of which I was already fully aware.
I note some on the Beacon site have not had transplants. There is no published information I can find in the advent of novel drug regimens of ongoing treatments and their tolerability as well as overall survival data of not so very old people who do not have stem cell transplants.
Also, ASCT is often preferred as it provides a drug-free period (although now with maintenance regimens being introduced, this is changing) and supposedly a longer progression-free survival period (again, not everyone has this, and some relapse very quickly after transplant – data often does not show the proportions of people who relapse at particular periods, just median survival data).
My own assessment is that the very much younger multiple myeloma sufferers, i.e. less than 55 years of age, actually appear to benefit most from HDT/ASCT or other transplants as to long survival with reasonable quality of life.
So my query was to try and get not a theoretical angle, which I have already, but someone's experience after transplant, with these conditions prior to HDT/ASCT.
Edna
Re: Scoliosis, spinal lesions & renal disease - and then SCT
Edna-
Unfortunately, there is no clear answer as to whether not doing a transplant has as good outcomes as doing a transplant in the era of novel agents. As has often been posted, there is research being done to hopefully shed a clearer light on that question. I don't know if any of the research that is being done includes younger people diagnosed with myeloma.
All of us who are faced with the decision as to whether to do a transplant wrestle with this and have to do our research, talk with our doctors, and ask others who have gone before (as you are doing). In the end, it becomes a leap of faith that the decision that you make is the right one for you and leads to the best outcome. Once the decision is made, don't look back and second guess yourself.
One of the things about maybe not doing a transplant early is that you can usually do one later if you change your mind or find that continuing your current treatment begins to not work for you. You should consider harvesting your stem cells now, even if you decide not to go forward with a transplant. Then you know that you have them available if you decide to do a transplant in the future.
All the best in making your decision,
Nancy in Phila
Unfortunately, there is no clear answer as to whether not doing a transplant has as good outcomes as doing a transplant in the era of novel agents. As has often been posted, there is research being done to hopefully shed a clearer light on that question. I don't know if any of the research that is being done includes younger people diagnosed with myeloma.
All of us who are faced with the decision as to whether to do a transplant wrestle with this and have to do our research, talk with our doctors, and ask others who have gone before (as you are doing). In the end, it becomes a leap of faith that the decision that you make is the right one for you and leads to the best outcome. Once the decision is made, don't look back and second guess yourself.
One of the things about maybe not doing a transplant early is that you can usually do one later if you change your mind or find that continuing your current treatment begins to not work for you. You should consider harvesting your stem cells now, even if you decide not to go forward with a transplant. Then you know that you have them available if you decide to do a transplant in the future.
All the best in making your decision,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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