Hi Dee,
There is no test available that can with 100% certaintly say that a myeloma patient will never relapse. That is a testing issue, not a therapy related one. This goes back to the basics of what caused myeloma in the first place. Your immune system produced a plasma cell that turned "rogue" and became myeloma. Your immune system then failed to identify it as a threat and allowed it to grow. An allo transplant puts a healthy donor immune system into your body. The longer a patient that did an allo is in remission the more likely it is that they will never relapse because it shows that the donor immune system is functioning properly. An allo can take care of a myeloma patients real problem - an immune system that is failing to identify the myeloma as a threat and is allowing it grow.
The Doctor that is considered the "Father of Bone Marrow Transplants" died last year. Here are some exerpts of articles discussing his career.
"Dr. Thomas received the 1990 Nobel Prize in Physiology or Medicine with Dr. Joseph E. Murray, who performed the first successful kidney transplant. In announcing the prize, the Karolinska Institute said discoveries by both men were “crucial for those tens of thousands of severely ill patients who either can be cured or given a decent life when other treatment methods are without success.”
Today, bone marrow transplants are an accepted treatment for leukemia and other blood cancers, and can cure some inherited forms of anemia, like sickle cell disease."
"These small successes led him to conduct transplants in patients with less advanced leukemia. In 1979, he reported curing half the leukemia patients who underwent transplantation when their disease was in chemotherapy-induced remission. Bone marrow transplants now can cure 70 to 80 percent of the healthiest children and teenagers with leukemia."
http://www.nytimes.com/2012/10/22/science/e-donnall-thomas-furthered-bone-marrow-transplants-dies.html?pagewanted=all&_r=0
That is a New York Times article that clearly states allos cure patients of blood cancer. Maybe you do not think they are a cure but the rest of the world does.
Mark
Forums
Re: Allo transplant cures?
I understand what you are reading. What I see are people dying from secondary cancers from the transplants and relapses. The doctors say this is incurable. If people are being cured than why is still called incurable? Where are the people that are cured? And I don't consider death from side effects and secondary cancers cured. I don't consider living for 5 years cured. I do understand the idea that transplants may prolong remission time, but I don't see people being cured.
Re: Allo transplant cures?
I think that, even though most doctors say that myeloma is incurable, they would at the same time agree that allo transplantation can be curative in some cases.
However, because allo transplantation isn't done that often in the U.S., most doctors don't feel it necessary to add a qualifier like "except if a patient has an allogeneic transplant" to the typical "myeloma is incurable" statement.
Also, just to make sure we're not confusing things here, it is allogeneic (donor) transplantation that is generally accepted as having the ability to cure a myeloma patient. The most common type of transplant, however, is an autologous (own stem cell) transplant, and (most?) doctors do not claim that auto transplants have the potential to be curative.
However, because allo transplantation isn't done that often in the U.S., most doctors don't feel it necessary to add a qualifier like "except if a patient has an allogeneic transplant" to the typical "myeloma is incurable" statement.
Also, just to make sure we're not confusing things here, it is allogeneic (donor) transplantation that is generally accepted as having the ability to cure a myeloma patient. The most common type of transplant, however, is an autologous (own stem cell) transplant, and (most?) doctors do not claim that auto transplants have the potential to be curative.
Re: Allo transplant cures?
But doesn't the donor come with more side effects? The reason it is not done that often, including a graft donor or some thing disease. Isn't there more chances of death? In other words, a bit risky?
Re: Allo transplant cures?
I just think if what is being done is not curing, perhaps some thing needs to change. I would love to see a cure, but with out a high chance of death trying. I just think some thing different needs to be done so we can see a cure.
Re: Allo transplant cures?
Yes, allo transplants are riskier than auto transplants. Exactly how much riskier they are is the subject of some debate. There's actually an interesting discussion on exactly that topic in the comments to a recent Beacon article:
https://myelomabeacon.org/news/2013/04/05/additional-study-finds-auto-allo-transplants-can-provide-long-term-control-of-myeloma/#comments
The risk associated with allo transplantation are probably an important reason why it's not particularly popular among myeloma specialists, particularly in the U.S. Again, though, one can debate whether those risks are being correctly perceived, and also whether other factors are also playing a role. We can only speculate, since few of us here are actually the physicians making the relevant treatment recommendations.
https://myelomabeacon.org/news/2013/04/05/additional-study-finds-auto-allo-transplants-can-provide-long-term-control-of-myeloma/#comments
The risk associated with allo transplantation are probably an important reason why it's not particularly popular among myeloma specialists, particularly in the U.S. Again, though, one can debate whether those risks are being correctly perceived, and also whether other factors are also playing a role. We can only speculate, since few of us here are actually the physicians making the relevant treatment recommendations.
Re: Allo transplant cures?
I think part of the reason they don't refer to allo's as curative is because they can't consistently replicate the results. It may be curative in some people, but I don't think the reasons why are clearly understood.
When it comes to myeloma, there is a great debate surrounding "cure" vs. "control." While I, too, would like to see a cure, I'll settle for control and a decent quality of life if it means I can have EJ around longer.
Lyn
When it comes to myeloma, there is a great debate surrounding "cure" vs. "control." While I, too, would like to see a cure, I'll settle for control and a decent quality of life if it means I can have EJ around longer.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Allo transplant cures?
dee777 wrote:
> I just think if what is being done is not curing, perhaps some thing needs
> to change. I would love to see a cure, but with out a high chance of death
> trying. I just think some thing different needs to be done so we can see a
> cure.
This is what the Black Swan Initiative is trying to address.
> I just think if what is being done is not curing, perhaps some thing needs
> to change. I would love to see a cure, but with out a high chance of death
> trying. I just think some thing different needs to be done so we can see a
> cure.
This is what the Black Swan Initiative is trying to address.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Allo transplant cures?
Hi Dee777,
Cure vs control. Would anyone who has/had myeloma actually believe their doctor if they say you are "cured". My first question would be "how do you know? to be followed with "what proof do you have? I would be more likely to believe that the myeloma is controlled. As Lyn said "While I, too, would like to see a cure, I'll settle for control and a decent quality of life if it means I can have EJ around longer." In my current position of being in remission solely from the allograft I dont particularly care if I am cured of the myeloma or if it is simply being controlled. It doesn't really change my life at present.
I can definitely say that my myeloma has been controlled by my donors immune system because of the following:
My conditioning for the allo was non-myeloablative using reduced intensity total body irradiation with a reduced dose of fludarabine. My paraprotein remained at the same before the chemo as 1 month after.
My myeloma grew as evidenced by the rise in the paraprotein level (16 g/L to 20 g/L) while I waited for the donor immune system to implant. I was on immunosuppressors at this stage. This was ~ 3 months after the allo.
I have taken no chemotherapy agents targetting myeloma since Jan 2011. The allo was late April 2011.
At the time that I experienced acute liver graft vs host disease (GVHD) my paraprotein dropped from ~ 17 g/L down to 4 g/L. (that was in the space of ~3 weeks)
Why do allos work in some people and not others? Essentially we are trying to control/cure an individuals myeloma (that can be a unique set of malignant clones) with another individuals complex immune system (that is also unique). What the new immune system will target can not be predetermined (at present). Another way of saying that is it cannot be controlled to specifically target only the myeloma cells. Therefore results are not replicated (in the short term due to insufficient data because allos are not recommended). A doctor will probably not recommend a mode of treatment that he/she will not be able to control unless it is a last option (as it was with me). Before a chemotherapy agent is approved it has been trialled extensively and the side effects associated with them will be known - but not everyone will have the same side effects. What would you recommend - something that is known (but it has limits ie can only extend life and the extension is unknown and there possibly will be some side effects) or the unknown (can extend life and cure but the target cannot be controlled and there are risks associated).
One of the major risks associated with allografts is GVHD, both chronic and acute. I think that the majority of people (doctors and patients) dont realise how quickly acute GVHD can develop. Educating patients/doctors regarding acute GVHD, when it can occur, what organs are likely to be targetted, how quickly it can develop and what the symptoms are likely to be and having action plans in place could decrease the risk associated with allos.
Libby
Cure vs control. Would anyone who has/had myeloma actually believe their doctor if they say you are "cured". My first question would be "how do you know? to be followed with "what proof do you have? I would be more likely to believe that the myeloma is controlled. As Lyn said "While I, too, would like to see a cure, I'll settle for control and a decent quality of life if it means I can have EJ around longer." In my current position of being in remission solely from the allograft I dont particularly care if I am cured of the myeloma or if it is simply being controlled. It doesn't really change my life at present.
I can definitely say that my myeloma has been controlled by my donors immune system because of the following:
My conditioning for the allo was non-myeloablative using reduced intensity total body irradiation with a reduced dose of fludarabine. My paraprotein remained at the same before the chemo as 1 month after.
My myeloma grew as evidenced by the rise in the paraprotein level (16 g/L to 20 g/L) while I waited for the donor immune system to implant. I was on immunosuppressors at this stage. This was ~ 3 months after the allo.
I have taken no chemotherapy agents targetting myeloma since Jan 2011. The allo was late April 2011.
At the time that I experienced acute liver graft vs host disease (GVHD) my paraprotein dropped from ~ 17 g/L down to 4 g/L. (that was in the space of ~3 weeks)
Why do allos work in some people and not others? Essentially we are trying to control/cure an individuals myeloma (that can be a unique set of malignant clones) with another individuals complex immune system (that is also unique). What the new immune system will target can not be predetermined (at present). Another way of saying that is it cannot be controlled to specifically target only the myeloma cells. Therefore results are not replicated (in the short term due to insufficient data because allos are not recommended). A doctor will probably not recommend a mode of treatment that he/she will not be able to control unless it is a last option (as it was with me). Before a chemotherapy agent is approved it has been trialled extensively and the side effects associated with them will be known - but not everyone will have the same side effects. What would you recommend - something that is known (but it has limits ie can only extend life and the extension is unknown and there possibly will be some side effects) or the unknown (can extend life and cure but the target cannot be controlled and there are risks associated).
One of the major risks associated with allografts is GVHD, both chronic and acute. I think that the majority of people (doctors and patients) dont realise how quickly acute GVHD can develop. Educating patients/doctors regarding acute GVHD, when it can occur, what organs are likely to be targetted, how quickly it can develop and what the symptoms are likely to be and having action plans in place could decrease the risk associated with allos.
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
29 posts
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