This may be a question with no answer, but since the release of the new guidelines that includes "myeloma defining events" as a consideration to treat smoldering patients, this may be a debate.
Having read the many many posts on whether or not to have SCT, I think if I was diagnosed with any of the CRAB symptoms, I wouldn't hesitate. But what about the smoldering patients that are now considered early myeloma? I feel that it's such an aggressive approach for someone who has never had a bone lesion or renal issue, and normal cytogenetics.
I am in the midst of CyBorD and need to decide what to do next (collect stem cells to store, SCT, maintenance, or do nothing and wait for relapse).
Would really appreciate your thoughts and opinions!
Forums
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Stem cell transplant for "early multiple myeloma"?
The thing is that you are more likely to do well and to tolerate the stem cell transplant BEFORE you have any of the CRAB stuff because your body is healthier to start with. The risks of transplant go up the more problems you have at the beginning of it. That is a pro for doing it early.
Another plus for doing it early is that, as myeloma progresses, the genetics change and generally become more difficult to treat. I don't know if there is any evidence that's actually been collected that says that people get better outcomes in terms of controlling the myeloma with early transplant. That would be a good question for your doctor.
I would certainly collect cells early at a minimum. I know that some chemo regimens can decrease your ability to collect enough cells after a while. I think that's Revlimid I'm thinking of. Just because you collect cells doesn't mean you ever have to use them, but at least they'll be there if you decide to pursue transplant.
Another plus for doing it early is that, as myeloma progresses, the genetics change and generally become more difficult to treat. I don't know if there is any evidence that's actually been collected that says that people get better outcomes in terms of controlling the myeloma with early transplant. That would be a good question for your doctor.
I would certainly collect cells early at a minimum. I know that some chemo regimens can decrease your ability to collect enough cells after a while. I think that's Revlimid I'm thinking of. Just because you collect cells doesn't mean you ever have to use them, but at least they'll be there if you decide to pursue transplant.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Stem cell transplant for "early multiple myeloma"?
Before you jump the rabbit, what are your cytogenetics?
Then look at things like the Mayo sMART protocol.
Good luck.
Then look at things like the Mayo sMART protocol.
Good luck.
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Rneb
Re: Stem cell transplant for "early multiple myeloma"?
My cytogenetics were normal, so I am inclined to wait on SCT, but I just wish the specialist would say that's ok!!! I feel as though he is cookbook, so I am actually going for another opinion in 2 months. The other issue is that the specialist that recommends SCT is in a facility where they can collect and store stem cells, but the second specialist is not (they don't collect and store).
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Stem cell transplant for "early multiple myeloma"?
I'll start out by saying that there is no right or wrong answer here, and opinions will differ between different myeloma specialists and patients. In addition, since the definition of "active myeloma" has just recently changed, we of course don't have data yet on long-term outcomes of patients who began treatment solely for one of the new "myeloma-defining events" rather than traditional CRAB criteria.
That being said, autologous stem cell transplant remains a very effective means of consolidating an initial response to therapy, and if it was determined that you have "active" myeloma that requires treatment, then it seems reasonable to me to treat the myeloma in the same fashion regardless of the way the myeloma was defined, at least until we have more data.
This of course is an opinion, and it's worth speaking with your myeloma specialist(s) to discuss the pros and cons of transplant in more detail. At the least, I would recommend collecting stem cells after an initial response is achieved, even if you wish to defer transplant for relapse.
That being said, autologous stem cell transplant remains a very effective means of consolidating an initial response to therapy, and if it was determined that you have "active" myeloma that requires treatment, then it seems reasonable to me to treat the myeloma in the same fashion regardless of the way the myeloma was defined, at least until we have more data.
This of course is an opinion, and it's worth speaking with your myeloma specialist(s) to discuss the pros and cons of transplant in more detail. At the least, I would recommend collecting stem cells after an initial response is achieved, even if you wish to defer transplant for relapse.
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Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Stem cell transplant for "early multiple myeloma"?
My only advice is to collect as many cells as you can.
When I started in 2009, the most common approach was to do transplant early. So I did back-to-back (tandem) SCT's early and am very happy I did.
Since the melphalan transplants worked for me more than anything else, the doctor said he's glad I have enough cells for a third transplant down the road.
When I started in 2009, the most common approach was to do transplant early. So I did back-to-back (tandem) SCT's early and am very happy I did.
Since the melphalan transplants worked for me more than anything else, the doctor said he's glad I have enough cells for a third transplant down the road.
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Stann
Re: Stem cell transplant for "early multiple myeloma"?
I was diagnosed with smoldering myeloma [SM] in December 2012; it was found by accident, and I was unsymptomatic. Now I am the sort of patient that is very pro-active. My haemotologist decided that he would take stem cells for a future stem cell transplant [SCT] as that suited my personality better, and at the same time gave the SM a bit of a kick in the guts (for a very SMALL amount of time). Since then he has retired, and my new haemotologist said he wouldn't have done that, he would have waited until the SM went active, in other words went to multiple myeloma [multiple myeloma] over SM.
My SM went active to multiple myeloma in Dec 2014, and I am now undergoing induction therapy for the SCT. It's a numbers game - all about your blood counts etc. The signs that the SM has turned to multiple myeloma is based on the numbers & the full body x-rays, and the bone marrow biopsy. Any of the CRAB symptoms means that you MAY have become active, and then that is confirmed by a bone marrow biopsy.
C= elevated calcium. This means your bones are beaning 'eaten' which means you could be developing lytic lesions &/or osteopenia [precursor to osteoporosis] or have osteoporosis.
R = renal, kidney function. This means that the para-proteins that are produced by the multiple myeloma are clogging up your kidneys and causing significant impairment.
A = anaemia. Which was what caused my diagnosis to change from SM to multiple myeloma. Your bone morrow simply is not making enough red blood cells for you to function normally, as red cells carry the oxygen to every other cell to be able to function.
B = bones. A whole body x-ray is done to see if you have lytic lesions (holes developing in your bones).
There is no gain from treating SM, which is why they wait until you have gone active. We, who are diagnosed with SM are very fortunate, in that we have a longer time to get our head around the diagnosis and deal with the reality of it all. It took me a year and a few changes in anti-depressant and anxiety medication for me to get out of depression (I have a terminal illness, so I want to kill myself - I mean REALLY!!!!
) But I KNEW I didn't, I just FELT that way, my emotions were lying to me, like when you wake up from a bad dream.
I cannot urge you enough to GO FOR IT when and IF you become active (my haemotologist knows of one lady who has had SM for 15 YEARS prior to going active). We should be so lucky
.
I am now about to start my 3rd cycle of my induction therapy (each cycle being a month, and I am lucky, I am having a very good response to the therapy, so my STC will be in about 2 months). I cannot say HOW good I feel, I haven't felt this good in a long time.
So - go for it - nothing to lose, and everything to gain.
My SM went active to multiple myeloma in Dec 2014, and I am now undergoing induction therapy for the SCT. It's a numbers game - all about your blood counts etc. The signs that the SM has turned to multiple myeloma is based on the numbers & the full body x-rays, and the bone marrow biopsy. Any of the CRAB symptoms means that you MAY have become active, and then that is confirmed by a bone marrow biopsy.
C= elevated calcium. This means your bones are beaning 'eaten' which means you could be developing lytic lesions &/or osteopenia [precursor to osteoporosis] or have osteoporosis.
R = renal, kidney function. This means that the para-proteins that are produced by the multiple myeloma are clogging up your kidneys and causing significant impairment.
A = anaemia. Which was what caused my diagnosis to change from SM to multiple myeloma. Your bone morrow simply is not making enough red blood cells for you to function normally, as red cells carry the oxygen to every other cell to be able to function.
B = bones. A whole body x-ray is done to see if you have lytic lesions (holes developing in your bones).
There is no gain from treating SM, which is why they wait until you have gone active. We, who are diagnosed with SM are very fortunate, in that we have a longer time to get our head around the diagnosis and deal with the reality of it all. It took me a year and a few changes in anti-depressant and anxiety medication for me to get out of depression (I have a terminal illness, so I want to kill myself - I mean REALLY!!!!
) But I KNEW I didn't, I just FELT that way, my emotions were lying to me, like when you wake up from a bad dream. I cannot urge you enough to GO FOR IT when and IF you become active (my haemotologist knows of one lady who has had SM for 15 YEARS prior to going active). We should be so lucky
.I am now about to start my 3rd cycle of my induction therapy (each cycle being a month, and I am lucky, I am having a very good response to the therapy, so my STC will be in about 2 months). I cannot say HOW good I feel, I haven't felt this good in a long time.
So - go for it - nothing to lose, and everything to gain.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Stem cell transplant for "early multiple myeloma"?
Hi Salzmav,
I'm glad to hear that your induction therapy is going well. I hope that continues to be the case and that your transplant goes smoothly as well.
I believe GardenGirl was considered to have smoldering myeloma under the older diagnostic criteria for multiple myeloma, which you summarized in your posting. However, with the new criteria that came out this fall (see "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders" by Dr. Rajkumar here at the Beacon), GardenGirl's diagnosis changed from smoldering to active multiple myeloma. It's because her disease doesn't meet the old "CRAB" criteria, but does meet some of the new, additional criteria, that she's talked about herself having "early multiple myeloma". It's also because her disease meets the new criteria that her disease is being actively treated with anti-myeloma therapy.
The new diagnostic criteria for myeloma mean that it's possible for someone to be diagnosed as having active multiple myeloma even if they don't meet the old "CRAB" criteria. Under the new definition, you can be diagnosed with multiple myeloma if you don't have any of the "CRAB" criteria, but you do have one of three new additional criteria:
I'm glad to hear that your induction therapy is going well. I hope that continues to be the case and that your transplant goes smoothly as well.
I believe GardenGirl was considered to have smoldering myeloma under the older diagnostic criteria for multiple myeloma, which you summarized in your posting. However, with the new criteria that came out this fall (see "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders" by Dr. Rajkumar here at the Beacon), GardenGirl's diagnosis changed from smoldering to active multiple myeloma. It's because her disease doesn't meet the old "CRAB" criteria, but does meet some of the new, additional criteria, that she's talked about herself having "early multiple myeloma". It's also because her disease meets the new criteria that her disease is being actively treated with anti-myeloma therapy.
The new diagnostic criteria for myeloma mean that it's possible for someone to be diagnosed as having active multiple myeloma even if they don't meet the old "CRAB" criteria. Under the new definition, you can be diagnosed with multiple myeloma if you don't have any of the "CRAB" criteria, but you do have one of three new additional criteria:
- 60% or more plasma cells in the bone marrow
- An involved / uninvolved free light chain ratio of 100 or more
- A focal bone lesion of 5 multiple myeloma or more as determined by MRI.
Re: Stem cell transplant for "early multiple myeloma"?
Thanks, Ian. The only problem that I can see under the new diagnostic criteria is that it has been proven that treating earlier doesn't improve either longevity or quality. With MY experience, I was fortunate in that it was the anaemia that got me. All other things were good, and anaemia is SO easy to treat - just a few units of irradiated packed red cells every so often.
Even under the new diagnostic criteria, I was not considered 'active', as nothing in the MRI etc showed anything. It was only when my haemoglobin went south, and then only after the bone marrow biopsy was done, that I was considered active.
But, then again, I consider myself very fortunate. At the moment, I am having a debate with my specialist to do another harvest - as I want a tandem transplant this time round (which would take up all of my stored stem cells). Now, a tandem transplant does not necessarily give longevity, but what it does do is give a longer non-symptomatic free period. And my life revolves around horses, and that is a 'bone' dangerous industry / hobby.
We shall see how my argument with my specialist pans out. Because I am fortunate to live in Australia, all my treatment is free (well, apart from helping to make a co-payment towards some of the drugs - but that is a bugger all amount really in the scheme of things). So what I have to do is convince him, AND the rest of the specialists, that it is worthwhile that the government spends that additional money on me.
Even under the new diagnostic criteria, I was not considered 'active', as nothing in the MRI etc showed anything. It was only when my haemoglobin went south, and then only after the bone marrow biopsy was done, that I was considered active.
But, then again, I consider myself very fortunate. At the moment, I am having a debate with my specialist to do another harvest - as I want a tandem transplant this time round (which would take up all of my stored stem cells). Now, a tandem transplant does not necessarily give longevity, but what it does do is give a longer non-symptomatic free period. And my life revolves around horses, and that is a 'bone' dangerous industry / hobby.
We shall see how my argument with my specialist pans out. Because I am fortunate to live in Australia, all my treatment is free (well, apart from helping to make a co-payment towards some of the drugs - but that is a bugger all amount really in the scheme of things). So what I have to do is convince him, AND the rest of the specialists, that it is worthwhile that the government spends that additional money on me.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Stem cell transplant for "early multiple myeloma"?
Hey garderngirl,
When I was diagnosed with multiple myeloma, I was not expected to survive my 11-day stay in the hospital. Three rounds of RVD (Revlimid, Velcade, and dex) later, and I had responded miraculously. Getting a SCT at that point really didn't require much consideration on my part. In some ways, I am grateful for that. Had I had a less severe initial diagnosis than it was – advanced chromosome 17p deletion, 12% healthy blood cells, bones that looked like Swiss cheese – the decision would have been a lot more difficult.
Looking back, what I have discerned is that everyone responds differently to SCT. For me, it was a very debilitating process, one that I really hoped to never have to repeat. On the other hand, a man I met at the hospital had a SCT at the same time as I did and, for him, it was a relatively easy process. Additionally, like my initial therapy, I responded miraculously to the SCT. Today, 1 1/2 years later, I am off all multiple myeloma meds and my blood work, M-spike, bones, etc. are very nearly normal.
The question for me, and the part of my journey that may apply to you, is whether I would consider another SCT if I relapse. I am grateful that the most recent research where the new multiple myeloma meds are combined, PKD (Pomalyst, Kyprolis, dex) replacing RVD, are yielding the same longevity results as a SCT in relapsed patients. Unfortunately, I have not seen any research that indicates the same for pre-SCT patients. Still, it seems reasonable to me to assume that the results could be similar.
All of this being said, if I were in your place, I would give serious consideration to trying the new regimens first. If it doesn't work, then make the decision to get a SCT. The problem you will undoubtedly be confronted with is that your insurance will probably not be willing to pay for the new regimen, at least not until you've exhausted the potential effectiveness of RVD.
Please keep us all posted as your decision making process progresses.
Daniel
When I was diagnosed with multiple myeloma, I was not expected to survive my 11-day stay in the hospital. Three rounds of RVD (Revlimid, Velcade, and dex) later, and I had responded miraculously. Getting a SCT at that point really didn't require much consideration on my part. In some ways, I am grateful for that. Had I had a less severe initial diagnosis than it was – advanced chromosome 17p deletion, 12% healthy blood cells, bones that looked like Swiss cheese – the decision would have been a lot more difficult.
Looking back, what I have discerned is that everyone responds differently to SCT. For me, it was a very debilitating process, one that I really hoped to never have to repeat. On the other hand, a man I met at the hospital had a SCT at the same time as I did and, for him, it was a relatively easy process. Additionally, like my initial therapy, I responded miraculously to the SCT. Today, 1 1/2 years later, I am off all multiple myeloma meds and my blood work, M-spike, bones, etc. are very nearly normal.
The question for me, and the part of my journey that may apply to you, is whether I would consider another SCT if I relapse. I am grateful that the most recent research where the new multiple myeloma meds are combined, PKD (Pomalyst, Kyprolis, dex) replacing RVD, are yielding the same longevity results as a SCT in relapsed patients. Unfortunately, I have not seen any research that indicates the same for pre-SCT patients. Still, it seems reasonable to me to assume that the results could be similar.
All of this being said, if I were in your place, I would give serious consideration to trying the new regimens first. If it doesn't work, then make the decision to get a SCT. The problem you will undoubtedly be confronted with is that your insurance will probably not be willing to pay for the new regimen, at least not until you've exhausted the potential effectiveness of RVD.
Please keep us all posted as your decision making process progresses.
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
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