My Uncle just received updated test results show progress in treatment. He will now be having discussions with his doctors regarding his SCT and if it would be after the current round of Chemo or if they would do another round before transplant. Is there a standard or guideline as to treatment progression and when they typically go through with the transplant?
A little background, and I don't know if this makes a difference, but the transplant will be syngeneic, as oppossed to atuologus, as my dad is his identical twin.
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Re: when? SCT
What you are describing is a Doner based stem cell transplant. It is used less often and is a higher risk proceedure. To learn more read Arnies post on the opinion page. Arnie has been battling multiple myeloma for years trying many different treatments. The doner based transplant is high risk but also potentially high reward. Basically all of the bone marrow is destroyed and regrown with a matching doners marrow. Their is a high risk of Graft vs host disease which means the recipients body rejects as a foreign object the doner's cells. On the reward side, if the proceedure is successful there is the potential for "cure". Generally this type of transplant is not recommended unless the patient is considered high risk and normal treatments will not work.
https://myelomabeacon.org/headline/2012/12/12/arnies-rebounding-world-the-donor-transplant-the-first-100-days-and-beyond/
Ron H
https://myelomabeacon.org/headline/2012/12/12/arnies-rebounding-world-the-donor-transplant-the-first-100-days-and-beyond/
Ron H
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: when? SCT
Ron is right, twinkies. Your uncle apparently is being considered for a donor / allogeneic / allo stem cell transplant.
If you search the forums using the keywords "allo" or "allogeneic", you will find a number of discussions on the subject. You also can search the main part of the site for additional information.
In addition to Arnie, who Ron just mentioned, there are a few people here in the forum who have had allo transplants. They are much less common than own (auto) transplants.
If your uncle is going to get an allo transplant, it would be best if he had it done at a cancer center that regularly does that sort of transplant. The more experience the center has, the less risky the procedure probably will be.
If you search the forums using the keywords "allo" or "allogeneic", you will find a number of discussions on the subject. You also can search the main part of the site for additional information.
In addition to Arnie, who Ron just mentioned, there are a few people here in the forum who have had allo transplants. They are much less common than own (auto) transplants.
If your uncle is going to get an allo transplant, it would be best if he had it done at a cancer center that regularly does that sort of transplant. The more experience the center has, the less risky the procedure probably will be.
Re: when? SCT
It's my understanding that syngeneic transplants are less risky than regular donor transplants as there is less risk of graft vs host disease but I could be wrong. Kathy Giusti founder of the multiple myeloma research foundation underwent a successful syngeneic transplant from her twin sister in 2006 and remains in remission today.
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Ronald
Re: when? SCT
Hi Twinkies,
As I mentioned in my other post, syngeneic transplants do not carry a risk of GVHD. Since there are so few syngeneic transplants there is little published data about them.
Allos are typically recommended as consolidation of first complete response. Well known transplant specialist Dr. Sergio Giralt (Robin Roberts transplant Doctor) recommends patients consider the allo to consolidate the patients first complete response (CR) or stringent complete response (sCR).
"Oncologists frequently see multiple myeloma patients in their practice who have achieved a stringent complete response (CR) after receiving several cycles of combination therapy, such as bortezomib plus thalidomide plus dexamethasone, followed by an autologous SCT. “These patients ask, ‘Can I be cured? What is my life expectancy? Will my disease come back?’” Dr. Giralt said in his presentation at the meeting. “There is a chance these patients will be cured, but more likely the disease will come back and will be more difficult to control due to clonal evolution, and will be more difficult to control with chemotherapy.”
The question for these patients is “would replacement of their bone marrow with the bone marrow and immune system of someone else be able to achieve long-term disease control? That is, can I do SCT and exploit the graft-versus-myeloma [GvM] effect that will prevent the disease from coming back. Is the risk of the procedure worth the benefit?”"
"Dr. Giralt summarized his view as follows, that current results with both autologous and allogeneic SCT justify the following patterns of care:
* In standard practice allogeneic SCT can be offered to patients with high-risk disease, or younger patients with standard-risk disease who are highly motivated and well-informed.
* Allogeneic SCT as consolidation of a first remission should preferentially be performed under the auspices of a clinical trial.
* Autologous SCT remains the most reasonable consolidative therapy for myeloma patients today."
http://journals.lww.com/oncology-times/Fulltext/2011/12100/Sergio_Giralt__Allogeneic_Transplant_Remains.4.aspx
Since a syngeneic transplant is kind of a hybrid between an allo and an auto, I would think they would recommend the syngeneic as consolidation of first CR. In allo transplants, the goal is to upgrade the response to an Immunophenotypic Response (IR) or a Molecular Response. Those response levels tend to hold remissions longer than a stringent complete response. Hopefully your Fathers immune system will be able to hold your Uncles remission for a long time!
Mark
As I mentioned in my other post, syngeneic transplants do not carry a risk of GVHD. Since there are so few syngeneic transplants there is little published data about them.
Allos are typically recommended as consolidation of first complete response. Well known transplant specialist Dr. Sergio Giralt (Robin Roberts transplant Doctor) recommends patients consider the allo to consolidate the patients first complete response (CR) or stringent complete response (sCR).
"Oncologists frequently see multiple myeloma patients in their practice who have achieved a stringent complete response (CR) after receiving several cycles of combination therapy, such as bortezomib plus thalidomide plus dexamethasone, followed by an autologous SCT. “These patients ask, ‘Can I be cured? What is my life expectancy? Will my disease come back?’” Dr. Giralt said in his presentation at the meeting. “There is a chance these patients will be cured, but more likely the disease will come back and will be more difficult to control due to clonal evolution, and will be more difficult to control with chemotherapy.”
The question for these patients is “would replacement of their bone marrow with the bone marrow and immune system of someone else be able to achieve long-term disease control? That is, can I do SCT and exploit the graft-versus-myeloma [GvM] effect that will prevent the disease from coming back. Is the risk of the procedure worth the benefit?”"
"Dr. Giralt summarized his view as follows, that current results with both autologous and allogeneic SCT justify the following patterns of care:
* In standard practice allogeneic SCT can be offered to patients with high-risk disease, or younger patients with standard-risk disease who are highly motivated and well-informed.
* Allogeneic SCT as consolidation of a first remission should preferentially be performed under the auspices of a clinical trial.
* Autologous SCT remains the most reasonable consolidative therapy for myeloma patients today."
http://journals.lww.com/oncology-times/Fulltext/2011/12100/Sergio_Giralt__Allogeneic_Transplant_Remains.4.aspx
Since a syngeneic transplant is kind of a hybrid between an allo and an auto, I would think they would recommend the syngeneic as consolidation of first CR. In allo transplants, the goal is to upgrade the response to an Immunophenotypic Response (IR) or a Molecular Response. Those response levels tend to hold remissions longer than a stringent complete response. Hopefully your Fathers immune system will be able to hold your Uncles remission for a long time!
Mark
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Mark
delaying SCT and clinical trials
My friend Amy has completed RVD induction with CR and has had her stem cells harvested. She is on maintenance Velcade sq. Now we are trying to determine if/when to go to SCT. Are there any clinical trials with RVD induction with immediate SCT vs RVD induction and delaying SCT ? All we hear about is going to SCT after induction as the evidence based approach to treatment but with these new novel therapies our question is what is the risk vs benefit of delaying SCT?
Re: when? SCT
With respect to AUTOLOGOUS stem cell transplants, there is currently NO definitive evidence to show any significant benefits on survival of an immediate versus a delayed transplant. See, for example, papers and posts from Rajkumar. There are controlled studies now to resolve this issue of immediate versus delayed - but the results are not in yet.
And complicating matters, there are also studies in progress to examine whether in this modern era of novel drugs, transplants are necessary at all - at least for some patients. Dr. James Berenson, who is completely opposed to transplants, has asserted a cure of some patients with his low-dose, low toxcity, approach. And even Ken Anderson, who most consder to be the leader in all things myeloma - has suggested that modern drugs may obviate the need for transplants, and when used in maintenance, may just result in a median survival of 15 years or much more; we just don't know yet, he says.
And speaking of novel drugs, in addition to the ones currently approved (Velcade, Revlimid, and just recently, Carfilzombib), I expect approval of pomalidomide within a year. And in the not too distant future (less than a few years I bet), I anticipate approval of therapeutic antibodies (elotouzumab) and a pill form of Velcade, and in a few years after that, I further anticipate at least another approved antibody (Daratumumab), just maybe the first vaccine/immunomodulatory based therapy that will allow your body to search and destroy the myeloma cells (Onco-Pep, as well as several other rnaturally and synthetically agents directed to other targets and mechanisms evoked in myeloma.
Incurable diseases spur a lot of research -- especially when, as here - the culprit is one type of cell - a Plasma Cell. Indeed, this is a disease where many clinicians do beleive that a cure is in the not-too-distant future. I think we need at least 7-10 years. But if not that, we should have a chronic disease management plan, akin to, say, diabetes. So there IS a lot of hope - but the future is still uncertain and yes, scary.
All that said, Mark is absolutely right and appears to be a living testament of the optimal efficacy of ALLOGENIC transplant. When administered immediately, it may just be a CURE - even now. What I don't know is what the optimal patient characteristics are, so that one is moderately confident it will be curative for them. Age? Cytogenetics? Type of Induction?
For me, I am taking a slow and steady approach - -but I am not ruling out an allogenic transplant -- if I have the gumption, right profile, and frankly, faith and courage. On the other hand, I also believe - especially for low risk patients such as myself - that by shrewedly applying a low toxicity, minimal drug treament plan, coupled with exercise, the right diet, supplements, and the right attitude, one can do well for many years without when the next set of options will be plentiful and well-defined. Indeed, a recent news update on this site reveals that BiRD therapy without a transplant results in a median progresison free survival of FIVE years - and strikingly, almost a year longer than that observed in similarly treated patients who DID have a transplant.
Good luck.
And complicating matters, there are also studies in progress to examine whether in this modern era of novel drugs, transplants are necessary at all - at least for some patients. Dr. James Berenson, who is completely opposed to transplants, has asserted a cure of some patients with his low-dose, low toxcity, approach. And even Ken Anderson, who most consder to be the leader in all things myeloma - has suggested that modern drugs may obviate the need for transplants, and when used in maintenance, may just result in a median survival of 15 years or much more; we just don't know yet, he says.
And speaking of novel drugs, in addition to the ones currently approved (Velcade, Revlimid, and just recently, Carfilzombib), I expect approval of pomalidomide within a year. And in the not too distant future (less than a few years I bet), I anticipate approval of therapeutic antibodies (elotouzumab) and a pill form of Velcade, and in a few years after that, I further anticipate at least another approved antibody (Daratumumab), just maybe the first vaccine/immunomodulatory based therapy that will allow your body to search and destroy the myeloma cells (Onco-Pep, as well as several other rnaturally and synthetically agents directed to other targets and mechanisms evoked in myeloma.
Incurable diseases spur a lot of research -- especially when, as here - the culprit is one type of cell - a Plasma Cell. Indeed, this is a disease where many clinicians do beleive that a cure is in the not-too-distant future. I think we need at least 7-10 years. But if not that, we should have a chronic disease management plan, akin to, say, diabetes. So there IS a lot of hope - but the future is still uncertain and yes, scary.
All that said, Mark is absolutely right and appears to be a living testament of the optimal efficacy of ALLOGENIC transplant. When administered immediately, it may just be a CURE - even now. What I don't know is what the optimal patient characteristics are, so that one is moderately confident it will be curative for them. Age? Cytogenetics? Type of Induction?
For me, I am taking a slow and steady approach - -but I am not ruling out an allogenic transplant -- if I have the gumption, right profile, and frankly, faith and courage. On the other hand, I also believe - especially for low risk patients such as myself - that by shrewedly applying a low toxicity, minimal drug treament plan, coupled with exercise, the right diet, supplements, and the right attitude, one can do well for many years without when the next set of options will be plentiful and well-defined. Indeed, a recent news update on this site reveals that BiRD therapy without a transplant results in a median progresison free survival of FIVE years - and strikingly, almost a year longer than that observed in similarly treated patients who DID have a transplant.
Good luck.
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Joey
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