Hi there
I've just returned from discussing having an allo transplant with the transplant unit in Wellington New Zealand. The figures and information I was given are a little different to those currently posted in this thread.
I was told that allos are reasonably successful with other types of blood cancers, but not with multiple myeloma, and that the two can't be compared. Something happens with multiple myeloma allo transplants, but "they" don't know what. Additionally, I was told that the high risk components of allos (for multiple myeloma) means that the preference is NOT to do them, unless there is absolutely no other treatment available. There is a 10% chance of success, a 50% chance of developing GVHD, and a 40% mortality rate for people in the 40-60 years age group. Time in hospital was quoted as approximately four weeks, then coming into the hospital daily for 2 months, with a 24/7 carer who must be with you at all times. This is if things are going well. The procedure is tough and people struggle. They can't say when you might go back to work, or even start feeling better, as it's different for everyone and depends how its going, with some people taking up to a year or more to start feeling better. Out of the 10 multiple myeloma allo transplants that the Unit did last year, 2 people are doing well.
There is talk about younger, healthier multiple myeloma patients doing better than people who have "come to the end of the line", however there is little evidence to support this, and research and stats about allos generally is scant.
Clearly, there are people writing on this site who are doing well, so it does become confusing. I got a second opinion from my previous specialist in Australia. His response was definitely not – the risk is too high. His preference was continued drug treatment as long as possible. Luckily, I do have some options.
My discussion In Wellington was an information gathering process, and it was me that was asking most of the questions, so they weren't trying to scare me off with the facts and figures – it was in fact a useful balanced chat – but I wanted to make sure that I was well informed, hence the stats.
I'm currently on The Millennium Trial, with my all markers starting to move up after two years with my M-protein on 0, lambda and kappa in normal ranges. They're still low, despite the upward movement, and I am considered in the "young healthy" group, primarily because I have no organ damage and all my other bloods are good. The only thing I had to deal with during the two years of VGPR was drug side effects, but now I've shifted to PR, the consideration of other treatments is underway. I'm still on the trial as I haven't reached the threshold that suggests the trial is of no use at all - it's a waiting game.
With two lots of frozen stem cells in storage, another auto is also an option, and I'm gathering more information about that possibility.
I've made the decision not to have the allo based on the stats I've been given. The remainder of life on various drug regimens doesn't appeal, but a 10% chance of a good outcome, with the other stats thrown in, are not good odds. And, as I live by myself, getting a 24/7 carer for two months is tricky as well – though that wasn't the basis of deciding not to go ahead. I'm sure that if an allo was a last resort, or was highly recommended, I would go ahead.
Karen
Forums
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kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: Decision time: allogeneic (donor) stem cell transplant
Hi Karen,
While I would agree that there is not a lot of data about allo transplant for myeloma, your doctors do not seem to be aware of the data that is out there.
The most recent study of patients that did allos I could find as part of upfront therapy shows stats that are quite different than those that you posted. The "gold standard" that determines if a therapy is successful is overall survival (OS). Typically transplant eligible patients in the US are told that the median OS for transplant eligible patients is 10 years. That means that half the patients died in the first 10 years. Note in this recent allo study for newly diagnosed patients, the median is not yet reached at 10 years, as the OS is 62% at 10 years in this study.
Here's the abstract for the study:
"Despite survival improvement with novel agents and use of autologous hematopoietic stem cell transplantation (HSCT), cure of patients with multiple myeloma remains anecdotal. Initial observations suggested that chronic GvHD was accompanied by an anti-myeloma effect after myeloablative HSCT, but unfortunately this procedure was hampered by high non-relapse mortality (NRM). To maximize the anti-myeloma effect and minimize NRM, we developed a non-myeloablative (NMA) regimen associated with a high incidence of chronic GvHD and tested its efficacy on patient survival and disease eradication. From 2001 to 2010, 92 patients aged⩽65 years with a compatible sibling donor received autologous HSCT followed by an outpatient NMA allogeneic HSCT using a conditioning of fludarabine and cyclophosphamide. Patient median age was 52 years and 97% presented Durie-Salmon stages II-III disease. After a median follow-up of 8.8 years, probability of 10-year progression free and overall survival were 41% and 62%, respectively. Although the cumulative incidence of extensive chronic GvHD was high (at 79%), the majority of long-term survivors were off immunosuppressive drugs by year 5 and NRM was low (at 10%). Together, our results suggest that potential multiple myeloma cure can be achieved with NMA transplantation regimens that maximize graft-versus-myeloma effect and minimize NRM."
And here's the reference:
I Ahmad et al, "Favorable long-term outcome of patients with multiple myeloma using a frontline tandem approach with autologous and non-myeloablative allogeneic transplantation", Bone Marrow Transplantation, December 2015 (abstract)
These stats are even better than they appear because only 18% percent of the patients had access to novel agents prior to transplant:
"In this edition of Bone Marrow Transplantation, Ahmad et al. report on a cohort of 92 newly diagnosed myeloma patients treated at a single institution from 2001 through 2010, with a planned standard autograft followed by an allograft from a HLA-identical sibling. At induction, 75/92 (82%) of patients were treated with VCR-adriamycin-dexamethasone and only a minority, 18/92 (18%), with bortezomib-based therapies."
From: B Bruno, "Allogeneic transplantation for multiple myeloma: yes, no or maybe?", Bone Marrow Transplantation, February, 2016 (abstract)
Having access to novel agents prior to transplant should improve both the cure rate of 41% and the OS of 62% at 10 years.
Maybe the transplant center you went to is not as experienced / successful as others in using allo transplant.
Mark
While I would agree that there is not a lot of data about allo transplant for myeloma, your doctors do not seem to be aware of the data that is out there.
Additionally, I was told that the high risk components of allos (for multiple myeloma) means that the preference is NOT to do them, unless there is absolutely no other treatment available. There is a 10% chance of success, a 50% chance of developing GVHD, and a 40% mortality rate for people in the 40-60 years age group.
The most recent study of patients that did allos I could find as part of upfront therapy shows stats that are quite different than those that you posted. The "gold standard" that determines if a therapy is successful is overall survival (OS). Typically transplant eligible patients in the US are told that the median OS for transplant eligible patients is 10 years. That means that half the patients died in the first 10 years. Note in this recent allo study for newly diagnosed patients, the median is not yet reached at 10 years, as the OS is 62% at 10 years in this study.
Here's the abstract for the study:
"Despite survival improvement with novel agents and use of autologous hematopoietic stem cell transplantation (HSCT), cure of patients with multiple myeloma remains anecdotal. Initial observations suggested that chronic GvHD was accompanied by an anti-myeloma effect after myeloablative HSCT, but unfortunately this procedure was hampered by high non-relapse mortality (NRM). To maximize the anti-myeloma effect and minimize NRM, we developed a non-myeloablative (NMA) regimen associated with a high incidence of chronic GvHD and tested its efficacy on patient survival and disease eradication. From 2001 to 2010, 92 patients aged⩽65 years with a compatible sibling donor received autologous HSCT followed by an outpatient NMA allogeneic HSCT using a conditioning of fludarabine and cyclophosphamide. Patient median age was 52 years and 97% presented Durie-Salmon stages II-III disease. After a median follow-up of 8.8 years, probability of 10-year progression free and overall survival were 41% and 62%, respectively. Although the cumulative incidence of extensive chronic GvHD was high (at 79%), the majority of long-term survivors were off immunosuppressive drugs by year 5 and NRM was low (at 10%). Together, our results suggest that potential multiple myeloma cure can be achieved with NMA transplantation regimens that maximize graft-versus-myeloma effect and minimize NRM."
And here's the reference:
I Ahmad et al, "Favorable long-term outcome of patients with multiple myeloma using a frontline tandem approach with autologous and non-myeloablative allogeneic transplantation", Bone Marrow Transplantation, December 2015 (abstract)
These stats are even better than they appear because only 18% percent of the patients had access to novel agents prior to transplant:
"In this edition of Bone Marrow Transplantation, Ahmad et al. report on a cohort of 92 newly diagnosed myeloma patients treated at a single institution from 2001 through 2010, with a planned standard autograft followed by an allograft from a HLA-identical sibling. At induction, 75/92 (82%) of patients were treated with VCR-adriamycin-dexamethasone and only a minority, 18/92 (18%), with bortezomib-based therapies."
From: B Bruno, "Allogeneic transplantation for multiple myeloma: yes, no or maybe?", Bone Marrow Transplantation, February, 2016 (abstract)
Having access to novel agents prior to transplant should improve both the cure rate of 41% and the OS of 62% at 10 years.
Maybe the transplant center you went to is not as experienced / successful as others in using allo transplant.
Mark
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
Hi Karen,
Let me address this point as well:
In the first study from 2011 ASH, patients that did planned upfront allos had an overall survival (OS) of 77% at 5 years and note no patient died between year 2 and year 5. In the not-upfront group, the OS at 5 years is about 20%. I would say that qualifies as a statistically significant difference. I would also note that the progression-free survival curve in the upfront group is flat and looks like it is around 50%. That projects to a cure rate in the 40's as well. I would think a therapy "works" if a patient ends up being cured by it. Also note these patients did not have access to upfront novel agents either.
(You can see the curves in the abstract: S Gerull et al, "Allogeneic Transplantation for Multiple Myeloma – the Swiss Experience," ASH 2011 annual meeting, abstract #3112 (abstract)).
Here is the abstract of a study published in 2014.
"We conducted a study of patients with multiple myeloma undergoing allogeneic transplantation to evaluate outcome parameters. Fifty-seven consecutive patients with multiple myeloma received an allogeneic transplantation between 2004 and 2011 at our institution. Patients who had received at least 1 prior autologous transplantation were included. Twenty-six patients underwent allogeneic transplantation for consolidation after a response to their first autograft, and 30 patients received an allogeneic transplantation as salvage therapy. Donor source was evenly distributed between related and unrelated. The median follow-up was 52 months. Thirty-two (57.1%) patients achieved a complete response (CR). At 5 years, 49.2% of all patients were in CR. Sixteen patients received either donor lymphocyte infusions or immune suppression withdrawal for disease progression, with a 62.5% response rate. The 5-year overall survival (OS) for all patients was 59%. The 5-year OS for the 30 patients in the consolidation group was 82% compared with 38% for those in the salvage group. In multivariate analysis, 3 factors remained significantly associated with OS. These include being in the salvage group (hazard ratio [HR], 4.05; P = .0196), acute graft-versus-host disease (aGVHD) (HR, 2.99; P = .034), and chronic graft-versus-host disease (cGVHD), which was highly protective, with a 5-year OS of 78.8% for patients with cGVHD versus 42.6% for patients without cGVHD (HR .17, P = .008). Our data show that allogeneic transplantation for multiple myeloma can lead to sustained remissions. aGVHD is significantly deleterious to OS and progression-free survival, whereas cGVHD is strongly favorable, supporting an important role for the graft-versus-myeloma effect."
Source:
M Donato et al, "The Graft-Versus-Myeloma Effect: Chronic Graft-Versus-Host Disease but Not Acute Graft-Versus-Host Disease Prolongs Survival in Patients with Multiple Myeloma Receiving Allogeneic Transplantation," Biology of Blood and Marrow Transplantation, August 2014 (full text of article)
Let me highlight the important point again:
"The 5-year OS for the 30 patients in the consolidation group was 82% compared with 38% for those in the salvage group. In multivariate analysis, 3 factors remained significantly associated with OS. These include being in the salvage group (hazard ratio [HR], 4.05; P = .0196), acute graft-versus-host disease (aGVHD) (HR, 2.99; P = .034), and chronic graft-versus-host disease (cGVHD), which was highly protective, with a 5-year OS of 78.8% for patients with cGVHD versus 42.6% for patients without cGVHD (HR .17, P = .008)."
"Minor" difference in OS between the consolidation and salvage group. I would also point out that an OS in low 80% range at 5 years compares favorably to the standard therapies. The patients that do allos get the added advantage of potentially being cured of their disease.
My experience has been 100% positive with allo transplant in first complete response, done 8 months after diagnosis. They are not for many patients, as most myeloma patients are diagnosed in their late 60's. I have a great quality of life, excellent blood work and I am 2 months short of being in a five-year drug free remission from high risk myeloma.
In my opinion, a therapy that can do that for a patient is an excellent therapy. I thank my doctor at the end of all my visits. I read posts like yours and I really know how fortunate I am to have a doctor that is skilled in the use of immunotherapy and offers her younger patients a chance at the BEST possible outcome as opposed to just having them settle for a lifetime of drugs and no chance at being cured of myeloma.
Mark
Let me address this point as well:
There is talk about younger, healthier multiple myeloma patients doing better than people who have "come to the end of the line", however there is little evidence to support this, and research and stats about allos generally is scant.
In the first study from 2011 ASH, patients that did planned upfront allos had an overall survival (OS) of 77% at 5 years and note no patient died between year 2 and year 5. In the not-upfront group, the OS at 5 years is about 20%. I would say that qualifies as a statistically significant difference. I would also note that the progression-free survival curve in the upfront group is flat and looks like it is around 50%. That projects to a cure rate in the 40's as well. I would think a therapy "works" if a patient ends up being cured by it. Also note these patients did not have access to upfront novel agents either.
(You can see the curves in the abstract: S Gerull et al, "Allogeneic Transplantation for Multiple Myeloma – the Swiss Experience," ASH 2011 annual meeting, abstract #3112 (abstract)).
Here is the abstract of a study published in 2014.
"We conducted a study of patients with multiple myeloma undergoing allogeneic transplantation to evaluate outcome parameters. Fifty-seven consecutive patients with multiple myeloma received an allogeneic transplantation between 2004 and 2011 at our institution. Patients who had received at least 1 prior autologous transplantation were included. Twenty-six patients underwent allogeneic transplantation for consolidation after a response to their first autograft, and 30 patients received an allogeneic transplantation as salvage therapy. Donor source was evenly distributed between related and unrelated. The median follow-up was 52 months. Thirty-two (57.1%) patients achieved a complete response (CR). At 5 years, 49.2% of all patients were in CR. Sixteen patients received either donor lymphocyte infusions or immune suppression withdrawal for disease progression, with a 62.5% response rate. The 5-year overall survival (OS) for all patients was 59%. The 5-year OS for the 30 patients in the consolidation group was 82% compared with 38% for those in the salvage group. In multivariate analysis, 3 factors remained significantly associated with OS. These include being in the salvage group (hazard ratio [HR], 4.05; P = .0196), acute graft-versus-host disease (aGVHD) (HR, 2.99; P = .034), and chronic graft-versus-host disease (cGVHD), which was highly protective, with a 5-year OS of 78.8% for patients with cGVHD versus 42.6% for patients without cGVHD (HR .17, P = .008). Our data show that allogeneic transplantation for multiple myeloma can lead to sustained remissions. aGVHD is significantly deleterious to OS and progression-free survival, whereas cGVHD is strongly favorable, supporting an important role for the graft-versus-myeloma effect."
Source:
M Donato et al, "The Graft-Versus-Myeloma Effect: Chronic Graft-Versus-Host Disease but Not Acute Graft-Versus-Host Disease Prolongs Survival in Patients with Multiple Myeloma Receiving Allogeneic Transplantation," Biology of Blood and Marrow Transplantation, August 2014 (full text of article)
Let me highlight the important point again:
"The 5-year OS for the 30 patients in the consolidation group was 82% compared with 38% for those in the salvage group. In multivariate analysis, 3 factors remained significantly associated with OS. These include being in the salvage group (hazard ratio [HR], 4.05; P = .0196), acute graft-versus-host disease (aGVHD) (HR, 2.99; P = .034), and chronic graft-versus-host disease (cGVHD), which was highly protective, with a 5-year OS of 78.8% for patients with cGVHD versus 42.6% for patients without cGVHD (HR .17, P = .008)."
"Minor" difference in OS between the consolidation and salvage group. I would also point out that an OS in low 80% range at 5 years compares favorably to the standard therapies. The patients that do allos get the added advantage of potentially being cured of their disease.
My experience has been 100% positive with allo transplant in first complete response, done 8 months after diagnosis. They are not for many patients, as most myeloma patients are diagnosed in their late 60's. I have a great quality of life, excellent blood work and I am 2 months short of being in a five-year drug free remission from high risk myeloma.
In my opinion, a therapy that can do that for a patient is an excellent therapy. I thank my doctor at the end of all my visits. I read posts like yours and I really know how fortunate I am to have a doctor that is skilled in the use of immunotherapy and offers her younger patients a chance at the BEST possible outcome as opposed to just having them settle for a lifetime of drugs and no chance at being cured of myeloma.
Mark
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
Thank you, Karen, for sharing the feedback you got from the doctors you spoke with about the possibility of an allo transplant. That was very helpful.
My sense from having followed myeloma-related research for a number of years is that there are several transplant centers in the U.S. and overseas which believe they have "good" (effective and safe) methods for doing allo transplants in multiple myeloma patients. You could even call some of the myeloma specialists at those centers "advocates" of allo transplantation for (at least some) myeloma patients.
I think it's also fair to say, however, that most of the rest of the myeloma specialist community, especially in the U.S., is wary – if not downright skeptical – about allo transplantation for myeloma patients. They have views that are probably similar to those that Karen heard in her recent discussions.
This does not mean that the specialists who believe in allo transplantation are wrong. It does mean, however, that a lot of very knowledgeable and experienced myeloma specialists are not big believers in allo transplantation for myeloma.
There are probably two or three big, multicenter clinical trials that have influenced opinion among myeloma specialists about allo transplantation for myeloma. One is the BMT CTN 0102 Phase 3 trial that enrolled more than 500 patients. It compared tandem auto-auto transplants to tandem auto-allo transplants. It found no survival benefit to the auto-allo strategy versus the auto-auto strategy. [1]
Another study that has been influential took place in Europe. It just recently reported updated results with close to a 10-year median follow up. The authors of the study noted:
"With the longest follow-up (median 113 months after Auto-SCT therapy) in published studies as yet, we found no benefit for Allo-SCT as part of first-line therapy on PFS and OS." [2]
There are also single-center studies with some scary results for allo transplantation – for example, treatment-related mortality rates as high as 60 percent. [3]
Is it possible to poke holes in these studies? Sure. But that's not the point.
The point is that, because some of the studies are large, multicenter, comparative trials, they influence specialist opinion. Also, the "scary" data from some of the single-center studies matter because, well, they're out there, and they psychologically counterbalance some of the pro-allo single-center studies out there.
So, yes, Karen might have heard something different if she had spoken to myeloma specialists at some of the "pro allo" myeloma treatment centers in the U.S. or overseas. But I also think she might have gotten very similar feedback to what she got if she held the same conversation at many other myeloma treatment centers in the U.S. or abroad.
References:
[1] A Krishnan et al, "Tandem Autologous versus Single Autologous Transplantation Followed by Allogeneic Hematopoietic Cell Transplantation for Patients with Multiple Myeloma: Results from the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) 0102 Trial," The Lancet Oncology, Mar 29, 2013 (abstract; full text at PubMed Central)
[2] HM Lokhorst, "Reduced Relapse Rate In Upfront Tandem Autologous/Reduced-Intensity Allogeneic Transplantation In Multiple Myeloma Only Results In Borderline Non-Significant Prolongation Of Progression-Free But Not Overall Survival," Haematologica, Dec 2015 (full text of article)
[3] L Rosiñol et al, "Allogeneic hematopoietic SCT in multiple myeloma: long-term results from a single institution," Bone Marrow Transplantation, May 2015 (abstract)
My sense from having followed myeloma-related research for a number of years is that there are several transplant centers in the U.S. and overseas which believe they have "good" (effective and safe) methods for doing allo transplants in multiple myeloma patients. You could even call some of the myeloma specialists at those centers "advocates" of allo transplantation for (at least some) myeloma patients.
I think it's also fair to say, however, that most of the rest of the myeloma specialist community, especially in the U.S., is wary – if not downright skeptical – about allo transplantation for myeloma patients. They have views that are probably similar to those that Karen heard in her recent discussions.
This does not mean that the specialists who believe in allo transplantation are wrong. It does mean, however, that a lot of very knowledgeable and experienced myeloma specialists are not big believers in allo transplantation for myeloma.
There are probably two or three big, multicenter clinical trials that have influenced opinion among myeloma specialists about allo transplantation for myeloma. One is the BMT CTN 0102 Phase 3 trial that enrolled more than 500 patients. It compared tandem auto-auto transplants to tandem auto-allo transplants. It found no survival benefit to the auto-allo strategy versus the auto-auto strategy. [1]
Another study that has been influential took place in Europe. It just recently reported updated results with close to a 10-year median follow up. The authors of the study noted:
"With the longest follow-up (median 113 months after Auto-SCT therapy) in published studies as yet, we found no benefit for Allo-SCT as part of first-line therapy on PFS and OS." [2]
There are also single-center studies with some scary results for allo transplantation – for example, treatment-related mortality rates as high as 60 percent. [3]
Is it possible to poke holes in these studies? Sure. But that's not the point.
The point is that, because some of the studies are large, multicenter, comparative trials, they influence specialist opinion. Also, the "scary" data from some of the single-center studies matter because, well, they're out there, and they psychologically counterbalance some of the pro-allo single-center studies out there.
So, yes, Karen might have heard something different if she had spoken to myeloma specialists at some of the "pro allo" myeloma treatment centers in the U.S. or overseas. But I also think she might have gotten very similar feedback to what she got if she held the same conversation at many other myeloma treatment centers in the U.S. or abroad.
References:
[1] A Krishnan et al, "Tandem Autologous versus Single Autologous Transplantation Followed by Allogeneic Hematopoietic Cell Transplantation for Patients with Multiple Myeloma: Results from the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) 0102 Trial," The Lancet Oncology, Mar 29, 2013 (abstract; full text at PubMed Central)
[2] HM Lokhorst, "Reduced Relapse Rate In Upfront Tandem Autologous/Reduced-Intensity Allogeneic Transplantation In Multiple Myeloma Only Results In Borderline Non-Significant Prolongation Of Progression-Free But Not Overall Survival," Haematologica, Dec 2015 (full text of article)
[3] L Rosiñol et al, "Allogeneic hematopoietic SCT in multiple myeloma: long-term results from a single institution," Bone Marrow Transplantation, May 2015 (abstract)
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JimNY
Re: Decision time: allogeneic (donor) stem cell transplant
Hello,
I had a T-cell depleted allo transplant in October 2014. I am currently in the best remission since my diagnosis (February 2011), although not a complete one.
I still have a small M-spike (0.3 g/dL) but was also disappointed that the transplant did not wipe out the myeloma. At the 30-day checkup, the spike was "undetectable." However, at the 3-month checkup, the spike was present again. It hasn't changed much for the past year or so, and my doctors say that it is stable. There is still hope that the T-cell injections from the donor may reduce or eliminate the spike in time.
The T-cell depleted transplant, which was pioneered by my doctor, has spared me the headache of having to deal with graft vs. host disease. I go for my 18-month checkup in April. My bone marrow is still free of disease at this time. Most of my bloodwork has returned to normal, save for the RBC, which still remain a little low (3.6-3.8). My immunoglobulins are all normal.
I have IgG lambda myeloma. My IgG now hovers between 800-900. At its peak, it was up around 5500. I feel pretty good. I continue to work out daily, eat well, as I always have, and try to stay positive, although I do have my days.
I am a high-risk patient. Upon relapse in March 2013, 2 years after my auto transplant, the disease became more aggressive, and I developed the p53 marker, which put me in a very high-risk category. I had no choice but to consider, on my doctors recommendations, an allo transplant. I was on Kyprolis, Revlimid, and dex for 7 months before the transplant, which worked extremely well (M-spike undetectable), although I didn't feel so great while I was on it. I was told that the treatment would not last much longer. Additionally, the Revlimid was affecting my ANC, and the Kyprolis was affecting my platelets and HMG.
I have had some issues with bleeding stomach ulcers, some respiratory infections, and a bout with pneumonia since the transplant. I need to be careful not to be around people that are sick; I get whatever that person has within a week.
But I get through it all the best I can. I try to live my normal life, and have done pretty well thus far. I can do pretty much what I want to do, although certain things still make my back and ribs very sore, and it takes several weeks to calm down once irritated.
Good luck to all. Hope I haven't bored anyone.
I had a T-cell depleted allo transplant in October 2014. I am currently in the best remission since my diagnosis (February 2011), although not a complete one.
I still have a small M-spike (0.3 g/dL) but was also disappointed that the transplant did not wipe out the myeloma. At the 30-day checkup, the spike was "undetectable." However, at the 3-month checkup, the spike was present again. It hasn't changed much for the past year or so, and my doctors say that it is stable. There is still hope that the T-cell injections from the donor may reduce or eliminate the spike in time.
The T-cell depleted transplant, which was pioneered by my doctor, has spared me the headache of having to deal with graft vs. host disease. I go for my 18-month checkup in April. My bone marrow is still free of disease at this time. Most of my bloodwork has returned to normal, save for the RBC, which still remain a little low (3.6-3.8). My immunoglobulins are all normal.
I have IgG lambda myeloma. My IgG now hovers between 800-900. At its peak, it was up around 5500. I feel pretty good. I continue to work out daily, eat well, as I always have, and try to stay positive, although I do have my days.
I am a high-risk patient. Upon relapse in March 2013, 2 years after my auto transplant, the disease became more aggressive, and I developed the p53 marker, which put me in a very high-risk category. I had no choice but to consider, on my doctors recommendations, an allo transplant. I was on Kyprolis, Revlimid, and dex for 7 months before the transplant, which worked extremely well (M-spike undetectable), although I didn't feel so great while I was on it. I was told that the treatment would not last much longer. Additionally, the Revlimid was affecting my ANC, and the Kyprolis was affecting my platelets and HMG.
I have had some issues with bleeding stomach ulcers, some respiratory infections, and a bout with pneumonia since the transplant. I need to be careful not to be around people that are sick; I get whatever that person has within a week.
But I get through it all the best I can. I try to live my normal life, and have done pretty well thus far. I can do pretty much what I want to do, although certain things still make my back and ribs very sore, and it takes several weeks to calm down once irritated.
Good luck to all. Hope I haven't bored anyone.
Re: Decision time: allogeneic (donor) stem cell transplant
Hi JimNY,
Thanks for the well thought out post.
I think the reason so many myeloma specialists tend to discount allo transplant is that they are not allo transplant experts. When you see them doing YouTube videos, appearing at conferences,etc. they are doing them for promotional purposes to get more patients to come to their institution. Honestly I think they go out of their way to make allo transplant sound bad because they have no alternative therapy that is curative. If you notice some of the things they mention as negatives of allo transplant, they are things that I would view as positives. As an example, I heard one state that 20% of allo transplant survivors are taking some type of immunosuppressive therapy five years after their transplant. This particular doctor is a proponent of continuos therapy. Since 100% of his 5-year survivors are taking immune / myelosuppressive drugs, the allo group is actually much less likely to be taking drugs that increase their chance of infection.
If you look at the 3 studies I showed, I can make a good argument that 40-50% of patients that do them in first remission in 2016 will be in remission 10 years later. Only the third one with 82% OS and 57% PFS at 5 years likely had a high percentage of patients that used novel agents. That is impressive data, in my opinion, given that the deeper remission status you are in at the time of transplant translates into a higher likelihood of not relapsing. It certainly would seem the transplant has a better than 10% chance of working if done early in disease course.
With respect to Karen personally, those stats she gave may apply to her. My doctor would not do an allo for her since she is relapsed and she commented that she has no caregivers. Caregivers are a key factor to having a successful allo transplant. Patients play a key role in having a successful therapy outcome, particularly after allo transplant. They have to avoid infection, take their meds, relay side effects to their doctor, etc. It takes a mature, motivated patient to have a successful allo transplant.
Mark
Thanks for the well thought out post.
I think the reason so many myeloma specialists tend to discount allo transplant is that they are not allo transplant experts. When you see them doing YouTube videos, appearing at conferences,etc. they are doing them for promotional purposes to get more patients to come to their institution. Honestly I think they go out of their way to make allo transplant sound bad because they have no alternative therapy that is curative. If you notice some of the things they mention as negatives of allo transplant, they are things that I would view as positives. As an example, I heard one state that 20% of allo transplant survivors are taking some type of immunosuppressive therapy five years after their transplant. This particular doctor is a proponent of continuos therapy. Since 100% of his 5-year survivors are taking immune / myelosuppressive drugs, the allo group is actually much less likely to be taking drugs that increase their chance of infection.
If you look at the 3 studies I showed, I can make a good argument that 40-50% of patients that do them in first remission in 2016 will be in remission 10 years later. Only the third one with 82% OS and 57% PFS at 5 years likely had a high percentage of patients that used novel agents. That is impressive data, in my opinion, given that the deeper remission status you are in at the time of transplant translates into a higher likelihood of not relapsing. It certainly would seem the transplant has a better than 10% chance of working if done early in disease course.
With respect to Karen personally, those stats she gave may apply to her. My doctor would not do an allo for her since she is relapsed and she commented that she has no caregivers. Caregivers are a key factor to having a successful allo transplant. Patients play a key role in having a successful therapy outcome, particularly after allo transplant. They have to avoid infection, take their meds, relay side effects to their doctor, etc. It takes a mature, motivated patient to have a successful allo transplant.
Mark
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
Hi Mantle7,
I did a partially T cell-depleted allo and, yes, not having a problem with extensive chronic GVHD is a great thing with respect to quality of life.
If you do not mind my asking, were you offered the opportunity to do the allo as part of your upfront therapy? I had spent 2 weeks in the hospital after diagnosis with 3 compression fractures, multiple broken ribs, fungal pneumonia, etc. so it was easy decision for me to do one in first complete response. I wanted to do all I could to avoid ever being like that again! That seems like a lifetime ago now.
Mark
I did a partially T cell-depleted allo and, yes, not having a problem with extensive chronic GVHD is a great thing with respect to quality of life.
If you do not mind my asking, were you offered the opportunity to do the allo as part of your upfront therapy? I had spent 2 weeks in the hospital after diagnosis with 3 compression fractures, multiple broken ribs, fungal pneumonia, etc. so it was easy decision for me to do one in first complete response. I wanted to do all I could to avoid ever being like that again! That seems like a lifetime ago now.
Mark
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
Well it's been some time since I posted anything. I'm that big on writing about this. But I really should because sometimes what you have to say could help others. Finally after dozens of treatments, both in and out of hospital, then two auto stem cell transplants, I am officially in remission.
Yes, this last one took a while to get my strength back, but I'm now doing projects around the house, riding the MC a bit if sightseeing, and just living life. All of us with multiple myeloma know very well that at this time there is no cure, but they come out with new drugs every year, so hopefully we can hang in there until they do find a cure. Seems like most of the publicity towards cancer is not towards multiple myeloma, and maybe if they focused on it like they do with other cancers they might find a cure.
Be well everyone and stay healthy.
Gary
Yes, this last one took a while to get my strength back, but I'm now doing projects around the house, riding the MC a bit if sightseeing, and just living life. All of us with multiple myeloma know very well that at this time there is no cure, but they come out with new drugs every year, so hopefully we can hang in there until they do find a cure. Seems like most of the publicity towards cancer is not towards multiple myeloma, and maybe if they focused on it like they do with other cancers they might find a cure.
Be well everyone and stay healthy.
Gary
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
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