Hi Mark,
Your posts are very informative. I just finished my second cycle with dexamethasone + Velcade. Not improving much so far, but I am starting to think about future options and an allo with T depleted is looking more and more interesting. It would have to be an unrelated doner too.
Would you mind to tell me where you were treated? Thank you,
Cassy
Forums
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Cassy66 - Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 55
Re: Will there be a myeloma cure in the next 10 years?
Mark,
Yes, your posts are very informative. What I take an issue with is the statement: "I actually think there is an accepted cure for younger multiple myeloma patients - allo transplant done in first complete response (optimally), or allo done to consolidate initial response."
The City of Hope study presents a sample of typical universe of allo candidates, some in CR and some in initial response other than CR. We are talking median age of 51. These are young people, at least by myeloma average age standard. We are also talking people treated with novel agents. "Thirty patients died: 23 of disease progression or relapse, and 7 from transplant-related complications...The cumulative incidence of relapse was 53% (CI: 0.4, 0.65) at five years and 59% (CI: 0.46, 0.71) at 7 years for the total group of 60 patients. Relapse incidence at 7 years for auto-allo patients was 54% (CI: 0.38, 0.69) and for flu-mel was 67% (CI: 0.43, 0.84)."
There aren't that many patients in the study with CR because not many people achieve CR to begin with, which is also probably why there isn't a specific study about allos with patients only in CR. Also, it is true that only 1 of the late relapse patients was a CR patients (the other 5 were PR at transplant) but that does not count patients who could have died earlier. These are late relapses only (past 6 years), i.e. bolstering the main point of the study that a cure is illusory.
Anyway, just another view. I apologize in advance and I hope my contrary view does not offend. People that consider this stuff should read these studies very carefully and TALK TO THEIR DOCTORS.
Good luck.
Yes, your posts are very informative. What I take an issue with is the statement: "I actually think there is an accepted cure for younger multiple myeloma patients - allo transplant done in first complete response (optimally), or allo done to consolidate initial response."
The City of Hope study presents a sample of typical universe of allo candidates, some in CR and some in initial response other than CR. We are talking median age of 51. These are young people, at least by myeloma average age standard. We are also talking people treated with novel agents. "Thirty patients died: 23 of disease progression or relapse, and 7 from transplant-related complications...The cumulative incidence of relapse was 53% (CI: 0.4, 0.65) at five years and 59% (CI: 0.46, 0.71) at 7 years for the total group of 60 patients. Relapse incidence at 7 years for auto-allo patients was 54% (CI: 0.38, 0.69) and for flu-mel was 67% (CI: 0.43, 0.84)."
There aren't that many patients in the study with CR because not many people achieve CR to begin with, which is also probably why there isn't a specific study about allos with patients only in CR. Also, it is true that only 1 of the late relapse patients was a CR patients (the other 5 were PR at transplant) but that does not count patients who could have died earlier. These are late relapses only (past 6 years), i.e. bolstering the main point of the study that a cure is illusory.
Anyway, just another view. I apologize in advance and I hope my contrary view does not offend. People that consider this stuff should read these studies very carefully and TALK TO THEIR DOCTORS.
Good luck.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Will there be a myeloma cure in the next 10 years?
Hi IvanM,
I am so glad I had my allo transplant. Unlike Mark who's allo was specifically planned to give the best results (one end of the scale) mine was let's say at the other end of the scale.
Prior to my allo I was not in remission, had never been in remission, the myeloma would become refractory to chemotherapy agents usually after the 3rd cycle, melphalan only reduced the cancer load by 16% so essentially I had run out of treatment agents (that were available at the time).
So the specialists (both myeloma specialising in allo transplants) gave me the chance to have an allo & they told me the risks (of having the allo & of not having the allo).
Most of us know about the potential risks & benefits of an allo transplant; we can even find papers that support our arguments for both sides. One thing that you have to remember with papers is that they describe work that was done years ago. For instance " Relapse incidence at 7 years for auto-allo patients was 54% (CI: 0.38, 0.69)" The patients involved in that study had their allo at least 7 years ago.
The myeloma clinic I attend our now offering up front allos (after an auto) to any high risk myeloma patient & any young patients. So they have initial therapy then auto followed by an allo in 3 months. If the patient relapses & requires chemotherapy they are finding that the chemotherapy agents are working for longer (ie resistance to the agent doesn't develop as quickly). Is this info in a paper? We will probably have to wait a couple of years to see it.
Am I remission solely due to the allo transplant? - Yes
Am I cured? - No
My allo was totally different to the one Mark had. If I had had an option of which style of allo I would probably go for the protocol he had. However my "fly by the seat of your pants" allo still got me to remission.
In itself my allo transplant (3 years ago, around the same time that Mark had his) was unique for the following reasons.
I did not have myeloablative conditioning.
I did not have an auto transplant as part of the treatment. (My auto 9 months prior didn't work)
I did not have stable disease.
My paraprotein level at 16 g/L was considered high (literature on the subject equates high paraprotein levels with poor prognosis).
I had reduced intensity conditioning.
If you take all of the above points to consider the potential outcome for the person undergoing the treatment you would have to say the prognosis is poor.
Why did they offer me an allo? Because they knew, these specialists who have been working with haematological malignancies for the past 18 years, that my only chance at a prolonged life was to have an allo transplant.
All the best,
Libby
I am so glad I had my allo transplant. Unlike Mark who's allo was specifically planned to give the best results (one end of the scale) mine was let's say at the other end of the scale.
Prior to my allo I was not in remission, had never been in remission, the myeloma would become refractory to chemotherapy agents usually after the 3rd cycle, melphalan only reduced the cancer load by 16% so essentially I had run out of treatment agents (that were available at the time).
So the specialists (both myeloma specialising in allo transplants) gave me the chance to have an allo & they told me the risks (of having the allo & of not having the allo).
Most of us know about the potential risks & benefits of an allo transplant; we can even find papers that support our arguments for both sides. One thing that you have to remember with papers is that they describe work that was done years ago. For instance " Relapse incidence at 7 years for auto-allo patients was 54% (CI: 0.38, 0.69)" The patients involved in that study had their allo at least 7 years ago.
The myeloma clinic I attend our now offering up front allos (after an auto) to any high risk myeloma patient & any young patients. So they have initial therapy then auto followed by an allo in 3 months. If the patient relapses & requires chemotherapy they are finding that the chemotherapy agents are working for longer (ie resistance to the agent doesn't develop as quickly). Is this info in a paper? We will probably have to wait a couple of years to see it.
Am I remission solely due to the allo transplant? - Yes
Am I cured? - No
My allo was totally different to the one Mark had. If I had had an option of which style of allo I would probably go for the protocol he had. However my "fly by the seat of your pants" allo still got me to remission.
In itself my allo transplant (3 years ago, around the same time that Mark had his) was unique for the following reasons.
I did not have myeloablative conditioning.
I did not have an auto transplant as part of the treatment. (My auto 9 months prior didn't work)
I did not have stable disease.
My paraprotein level at 16 g/L was considered high (literature on the subject equates high paraprotein levels with poor prognosis).
I had reduced intensity conditioning.
If you take all of the above points to consider the potential outcome for the person undergoing the treatment you would have to say the prognosis is poor.
Why did they offer me an allo? Because they knew, these specialists who have been working with haematological malignancies for the past 18 years, that my only chance at a prolonged life was to have an allo transplant.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Will there be a myeloma cure in the next 10 years?
Id love to say yes, but Im not so sure. 
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Guest1
Re: Will there be a myeloma cure in the next 10 years?
Libby,
I am not disputing that an allo has a potential for cure. I am positing that taking the view that an allo is an accepted form of a cure for young patients (in CR or first PR) is disputable. I believe the City of Hope study (the most recent, longest follow-up, young patients with CR and PR + novel agents, transplant within 12 months from diagnosis) contradicts that view, showing that some of those that did not die in the first 6 years, relapsed (as late as 12 years I believe). Mark reads it differently, which actually is great because as I said, ultimately patients should read the studies for themselves and decide for themselves.
Does this matter? In the end, not so much I think. What matters is the N of 1. Fact of the matter is that allo for young patients is the ONLY meaningful potential for a cure. I think on that we agree. My view is that it is still a crapshoot. In any event, to distance myself from the allo topic, and go back to the more general topic of a cure in the next 10 years, I think the following came from Mayo yesterday at ASCO:
"During the last 6 years for which we have data from the SEER database, the 5-year survival rate has been increasing each year by more than 2%. If we continue at this rate we will reach 100% in about 25 years. Given the new active drugs in development, and immunotherapeutic approaches on the horizon, we can be hopeful that we will reach that goal in an even shorter time, and our children will need to focus their attention on other tumors that have lagged behind the advances made in the field of multiple myeloma." (http://meetinglibrary.asco.org/content/114000199-144)
In other words, a cure - maybe for our children. As I said, a chronic disease, maybe this is something we can realistically aspire towards in the next 10 years. Of course, I wish I am wrong on the big picture. Specifically, I also wish that both you and Mark prove me wrong and are cured.
Best of luck to you.
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Moderator's note: There is a discussion thread that was started yesterday evening about the Mayo/ASCO research that ivanm mentions. The thread includes a key graph from that study. This link will take you to the thread.
I am not disputing that an allo has a potential for cure. I am positing that taking the view that an allo is an accepted form of a cure for young patients (in CR or first PR) is disputable. I believe the City of Hope study (the most recent, longest follow-up, young patients with CR and PR + novel agents, transplant within 12 months from diagnosis) contradicts that view, showing that some of those that did not die in the first 6 years, relapsed (as late as 12 years I believe). Mark reads it differently, which actually is great because as I said, ultimately patients should read the studies for themselves and decide for themselves.
Does this matter? In the end, not so much I think. What matters is the N of 1. Fact of the matter is that allo for young patients is the ONLY meaningful potential for a cure. I think on that we agree. My view is that it is still a crapshoot. In any event, to distance myself from the allo topic, and go back to the more general topic of a cure in the next 10 years, I think the following came from Mayo yesterday at ASCO:
"During the last 6 years for which we have data from the SEER database, the 5-year survival rate has been increasing each year by more than 2%. If we continue at this rate we will reach 100% in about 25 years. Given the new active drugs in development, and immunotherapeutic approaches on the horizon, we can be hopeful that we will reach that goal in an even shorter time, and our children will need to focus their attention on other tumors that have lagged behind the advances made in the field of multiple myeloma." (http://meetinglibrary.asco.org/content/114000199-144)
In other words, a cure - maybe for our children. As I said, a chronic disease, maybe this is something we can realistically aspire towards in the next 10 years. Of course, I wish I am wrong on the big picture. Specifically, I also wish that both you and Mark prove me wrong and are cured.
Best of luck to you.
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Moderator's note: There is a discussion thread that was started yesterday evening about the Mayo/ASCO research that ivanm mentions. The thread includes a key graph from that study. This link will take you to the thread.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Will there be a myeloma cure in the next 10 years?
Hi Mark, your answer was very helpful. Thank you very much. Anyway I'm not sure, if I "take" the allo or the double auto. I talked with two well known specialists in two German centers. One is a fan of allo, the other doc facors an auto. He refers to the Total Therapy Protocol of UAMS, that's for a subgroup of patients "nearly curative". But will I fit in the low group patients? Even if the genetically profiling says you're low risk, I know fellow patients, who had a relapse.
Myeloma is a so complex and devastating disease. Because this post is about curative therapies, I feel, that we're not yet there. So many therapies - but transplants seem to be the gold standard at date. Again - thank you! All the best for your journey. Thomas
Myeloma is a so complex and devastating disease. Because this post is about curative therapies, I feel, that we're not yet there. So many therapies - but transplants seem to be the gold standard at date. Again - thank you! All the best for your journey. Thomas
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Thomas
Re: Will there be a myeloma cure in the next 10 years?
IvanM - You definitely wrote nothing offensive. I thought that was an informative discussion. Two people can read the same study and come to different conclusions. I think it is great when patients link peer reviewed studies as opposed to just stating some doctors opinion with no study/trial to back up what they are saying.
Thomas - You have to do what you feel most comfortable with. Some of my replies were long because I wanted everyone to know how I read the data. As I mentioned doing the allo was not a difficult decision for me due to the views that I mentioned above. I know I would have always been thinking "what if" if had chosen to not do the allo. The decision was made easier when I found out that my donor was a female. The female donor to male recipient pair is the one that had the best chance of not relapsing.
Out of curiosity does the doctor that is proposing the tandem auto protocol think an upfront allo is curative? I saw two other doctors beside the one that treats me and they both agreed that I could possibly be cured with an upfront allo because they both thought I would get to CR. Only one of the other doctors thought I should do an upfront allo though. I actually went to him thinking he would help me decide on if I should do a tandem auto - allo with reduced intensity or go straight from induction to an allo with myeloablative (full) conditioning. Due to my insurance company I ended up doing a tandem auto - allo with full conditioning. While I am not a believer in using twice as much melphalan I certainly hope it does provide a benefit!
Thomas - You have to do what you feel most comfortable with. Some of my replies were long because I wanted everyone to know how I read the data. As I mentioned doing the allo was not a difficult decision for me due to the views that I mentioned above. I know I would have always been thinking "what if" if had chosen to not do the allo. The decision was made easier when I found out that my donor was a female. The female donor to male recipient pair is the one that had the best chance of not relapsing.
Out of curiosity does the doctor that is proposing the tandem auto protocol think an upfront allo is curative? I saw two other doctors beside the one that treats me and they both agreed that I could possibly be cured with an upfront allo because they both thought I would get to CR. Only one of the other doctors thought I should do an upfront allo though. I actually went to him thinking he would help me decide on if I should do a tandem auto - allo with reduced intensity or go straight from induction to an allo with myeloablative (full) conditioning. Due to my insurance company I ended up doing a tandem auto - allo with full conditioning. While I am not a believer in using twice as much melphalan I certainly hope it does provide a benefit!
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Mark
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