Hi Steve
It certainly is difficult to know what to do. My husband was at the older end of the spectrum when he was diagnosed (71) He was very robust and in good health otherwise he would not have been a candidate for ASCT. Generally it is not offered to folks over 65. We are grateful that he was a candidate. I am delighted to say that he did not have any side effects of the tandem transplants except he found it more difficult to beat me playing cards. As you have likely already discovered there are daily new novel therapies that are helpful for multiple myeloma. If you elect not to have the SCT consider in consultation with your haematologist harvesting and cryo freezing the cells to be used at a later date. It is my understanding that multiple myeloma at this time will always return. The new normal is clearly that and try and be present to your life as it is right now. CU Alexandra
Forums
Re: Steve's story and should I get a SCT?
Reading Alexandra's comment made me think of something.
I think I read somewhere that, for myeloma patients who are older than 65, but still in good health, doctors often recommend doing a transplant sooner rather than later.
The thinking, if I recall correctly, is that waiting to do the transplant later, rather than sooner, with these patients is risky. The patient's health could decline due to age or the myeloma, and transplant might no longer be an option.
So you make sure to do the transplant when the patient is healthy enough to do it.
Is this true? Or am I imagining that I read this someplace?
I think I read somewhere that, for myeloma patients who are older than 65, but still in good health, doctors often recommend doing a transplant sooner rather than later.
The thinking, if I recall correctly, is that waiting to do the transplant later, rather than sooner, with these patients is risky. The patient's health could decline due to age or the myeloma, and transplant might no longer be an option.
So you make sure to do the transplant when the patient is healthy enough to do it.
Is this true? Or am I imagining that I read this someplace?
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TerryH
Re: Steve's story and should I get a SCT?
This was quite a long stream of activity/postings regarding Steve's story. But one that befits this question- one that should not be taken lightly. I will start with what I recommend for all my patients that are transplant eligible and then discuss some of the rationale for chosing trransplant or not, when to get a transplant, and storage of stem cells.
I recommend that all transplant eligible patients undergo transplant at their first line of induction therapy.
Who is eligible? In Europe today, the answer is easy- age <65. In the states age is not an all defining criterion. Physiologic age, the overall fitness of the indvidual is more important. I send a number of my patients for transplant in the early 70s with excellent outcomes. Again, physiologic age is the gage. Your treating doctor and transpant doctors will be able to help assess that for any patient. There are increasing risks with age and issues with cardiac, kidney, lung, and other organ dysfunction that must be taken into account when personalizing this decision.
Why? Some historical perspective is needed. HDM-ASCT (high-dose melphalan with autologous stem cells support) was initially introduced becuase the therapies of the day (e.g. Vincristine, Adriamycin, and Dex) were frequently unable to acheive lasting or meaningful responses. This method was designed to give high-doses of chemotherapy, to acheive better and longer responses. Then with the introduction of Thalidomide and more so Velcade and Revlimid rates and depth of responses only seen with transplant were being observed -with only Revlimid + Dex or Velcade + Dex (with more in triple agent therapy). Thus it was beleived that transplant may no longer be needed- a nice thought because we could give "well" tolerated therapy and acheive the same endpoint. Unfortunately, this is not necessarily the case. There are a number of ongoing clinical trials addressing this question- Can patient receiving only chemotherapy do as well (live as long) as those receiving both? The concrete answer is remains unanswered today. However, much of the preliminary data suggests that the incorporation of HDM-ASCT will improve outcomes for patients (eligible patients). To this end, with currently available therapy transplant should be part of every eligible patient treatment algorithm.
When? I prefer early transplant (after induction/primary therapy). The available data states that patients who receive HDM-ASCT after response 1 ("early") or after response 2 ("delayed" - after initial relapse and subsequent salvage therapy) have the same outcomes. However, there are number of issues to consider. The depth of resopnse matters- so will you acheive the same depth of response? Your physiology matter- will you be in as good a shape at that time? You need an adequate stem cell harvest- will this be compromised by current and subseuqent therapy? There other considerations as well. Remember that every patient is an individual so social, health, and other issues must be put into the equation as well.
Does depth of response matter? Yes. As i was reading a number of individuals suggested that by acheiving a CR (complete response) the need for transplant lessoned. Interestingly, I would state that those are the individuals that will gain the most from a transplant. Most data suggests that patients acheiving at least a very good partial response (VGPR- 90% reduction in measurable disease) have better outcomes than those acheiving a PR (50%).
How long can you store cells? You can store cells longer than you will need them. But a major question should be: can you store stem cells? Although it is ideal to see store stem cells for every transplant eligible patient (and enough for a second transplant), not all payors (insurance companies and medicare) will pay for collection and storage- they pay for collectino and utilization. I feel that this is a major issue for my patients (all patients), but not one that I have any control over.
Every patient is an individual and every patient and his/her on beliefs, desires, and histories. HDM-ASCT is not for everyone. Therefore, not everyone will want to undergo transplant. But it is a key component in the myeloma treatment algorithm today (maybe-hopefully-someday we will not need it).
I recommend that all transplant eligible patients undergo transplant at their first line of induction therapy.
Who is eligible? In Europe today, the answer is easy- age <65. In the states age is not an all defining criterion. Physiologic age, the overall fitness of the indvidual is more important. I send a number of my patients for transplant in the early 70s with excellent outcomes. Again, physiologic age is the gage. Your treating doctor and transpant doctors will be able to help assess that for any patient. There are increasing risks with age and issues with cardiac, kidney, lung, and other organ dysfunction that must be taken into account when personalizing this decision.
Why? Some historical perspective is needed. HDM-ASCT (high-dose melphalan with autologous stem cells support) was initially introduced becuase the therapies of the day (e.g. Vincristine, Adriamycin, and Dex) were frequently unable to acheive lasting or meaningful responses. This method was designed to give high-doses of chemotherapy, to acheive better and longer responses. Then with the introduction of Thalidomide and more so Velcade and Revlimid rates and depth of responses only seen with transplant were being observed -with only Revlimid + Dex or Velcade + Dex (with more in triple agent therapy). Thus it was beleived that transplant may no longer be needed- a nice thought because we could give "well" tolerated therapy and acheive the same endpoint. Unfortunately, this is not necessarily the case. There are a number of ongoing clinical trials addressing this question- Can patient receiving only chemotherapy do as well (live as long) as those receiving both? The concrete answer is remains unanswered today. However, much of the preliminary data suggests that the incorporation of HDM-ASCT will improve outcomes for patients (eligible patients). To this end, with currently available therapy transplant should be part of every eligible patient treatment algorithm.
When? I prefer early transplant (after induction/primary therapy). The available data states that patients who receive HDM-ASCT after response 1 ("early") or after response 2 ("delayed" - after initial relapse and subsequent salvage therapy) have the same outcomes. However, there are number of issues to consider. The depth of resopnse matters- so will you acheive the same depth of response? Your physiology matter- will you be in as good a shape at that time? You need an adequate stem cell harvest- will this be compromised by current and subseuqent therapy? There other considerations as well. Remember that every patient is an individual so social, health, and other issues must be put into the equation as well.
Does depth of response matter? Yes. As i was reading a number of individuals suggested that by acheiving a CR (complete response) the need for transplant lessoned. Interestingly, I would state that those are the individuals that will gain the most from a transplant. Most data suggests that patients acheiving at least a very good partial response (VGPR- 90% reduction in measurable disease) have better outcomes than those acheiving a PR (50%).
How long can you store cells? You can store cells longer than you will need them. But a major question should be: can you store stem cells? Although it is ideal to see store stem cells for every transplant eligible patient (and enough for a second transplant), not all payors (insurance companies and medicare) will pay for collection and storage- they pay for collectino and utilization. I feel that this is a major issue for my patients (all patients), but not one that I have any control over.
Every patient is an individual and every patient and his/her on beliefs, desires, and histories. HDM-ASCT is not for everyone. Therefore, not everyone will want to undergo transplant. But it is a key component in the myeloma treatment algorithm today (maybe-hopefully-someday we will not need it).
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Steve's story and should I get a SCT?
With all due respect, I am baffled and troubled by your oversimplifed analysis -- which cites (then rejects and twists) the historical rationale for ASCT; is based on speculation only; and completely ignores the risks and long term side effects of transplant, such as brain fog and impotence.
I also see no discussion of how depth of response relates to either quality of life, progression, or overall survival. I ask you: Do patients with MGUS suffer for twenty years despite low-levels of disease. I think not. Why not think about controlling and stabilizing the disease rather than killing every last cell -- and every health dividing cell in the process.
And by simply prescribing a one-size-fits-all approch, you fail to stratify patients by need or likelihood of success with a transplant -- or even address this issue.
Finally, I see no discussion -- and here I am an advocate of transplants -- of combing ASCT with immunomodulatory or other approaches in the bold mission of finding a functional cure or boasting the long-term remission rate. With dozen and dozens of drugs in the pipeline, isn't that where progressive thinking should lie?
Resting on the status-quo is a disservice to patients and doctors for tacking a disease, whose treatment has shown great progress. Equally unsettling is your reliance on scare tactics and financial woes to justify your argument.
I also see no discussion of how depth of response relates to either quality of life, progression, or overall survival. I ask you: Do patients with MGUS suffer for twenty years despite low-levels of disease. I think not. Why not think about controlling and stabilizing the disease rather than killing every last cell -- and every health dividing cell in the process.
And by simply prescribing a one-size-fits-all approch, you fail to stratify patients by need or likelihood of success with a transplant -- or even address this issue.
Finally, I see no discussion -- and here I am an advocate of transplants -- of combing ASCT with immunomodulatory or other approaches in the bold mission of finding a functional cure or boasting the long-term remission rate. With dozen and dozens of drugs in the pipeline, isn't that where progressive thinking should lie?
Resting on the status-quo is a disservice to patients and doctors for tacking a disease, whose treatment has shown great progress. Equally unsettling is your reliance on scare tactics and financial woes to justify your argument.
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Ma Larkey
Re: Steve's story and should I get a SCT?
Hi, Ma Larkey:
This is a forum where patients and caregivers learn from the experts and lean on each other in their struggles against the disease. Therefore we should all strive for more civility, no matter we agree or disagree with others' views and no matter how strongly we do.
Dr. Shain's view on the importance of deep remission is backed by past trials. The rationale is apparently that the lesser the residual disease the longer the patient can be expected to stay in remission after treatment and avoid resistant myeloma cells that can sometimes result from prolonged treatments. Mayo Clinic is a big proponent of treatment by risk stratification. Even there, there are no set rules on whether ASCT should be conducted upfront or as a rescue therapy. Instead it is up to the patient's preference. But at the same time, each doctor is allowed to have his or her own treating philosophy and you can hardly fault Dr. Shain for his. Lastly, I don't see any scare tactics. If one's insurer declines to pay for the storage of stem cells if they are not used for transplantation immediately, stories of which I have heard in the past by the way, it is a problem the patient has to address. It's just a plain fact, fair or not.
Ben
This is a forum where patients and caregivers learn from the experts and lean on each other in their struggles against the disease. Therefore we should all strive for more civility, no matter we agree or disagree with others' views and no matter how strongly we do.
Dr. Shain's view on the importance of deep remission is backed by past trials. The rationale is apparently that the lesser the residual disease the longer the patient can be expected to stay in remission after treatment and avoid resistant myeloma cells that can sometimes result from prolonged treatments. Mayo Clinic is a big proponent of treatment by risk stratification. Even there, there are no set rules on whether ASCT should be conducted upfront or as a rescue therapy. Instead it is up to the patient's preference. But at the same time, each doctor is allowed to have his or her own treating philosophy and you can hardly fault Dr. Shain for his. Lastly, I don't see any scare tactics. If one's insurer declines to pay for the storage of stem cells if they are not used for transplantation immediately, stories of which I have heard in the past by the way, it is a problem the patient has to address. It's just a plain fact, fair or not.
Ben
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Ben S.
Re: Steve's story and should I get a SCT?
Hello Ma Larkey,
Dr. Shain, provided a well-thought out rationale for why HE, as a multiple myeloma EXPERT, recommends based on his EXTENSIVE clinical experience HDT following induction vs at time of relapse, which WAS the primary question that Steve had.
Were YOU seeking additional information? If so, I am sure a query would be far more likely to achieve that result than condescending indignation.
you write:
"Finally, I see no discussion -- and here I am an advocate of transplants -- of combing ASCT with immunomodulatory or other approaches in the bold mission of finding a functional cure or boasting the long-term remission rate."
Steve did not ask this, is this YOUR issue? if so,
Why are you a proponent of high-dose chemotherapy (HDT)? Let's not hide behind this ridiculous SCT euphemism, as that is not the therapy. It is highly toxic dose limiting lethality chemo that is the treatment.. What makes you believe combining HDT with ANYTHING will produce higher remission rates when it has not in over 30 years? And there have been a plethora of failed combinations. Such that to this day, there is still a 50% failure rate with HDT
What is bold about taking someone to the brink of death and then bringing them back with their own cells as the salvage for their own mortality? I think the B word here is barbaric vs. bold.
Are you unaware of how depth of response (DR) relates to PFS/OS? Many readers of the MB are aware that how DR correlates with PFS/OS is dependent on risk stratification along with cytogenetic abnormalities. IOW's someone with a 'standard risk' multiple myeloma with a PR can have a longer PFS than another patient who has CR and is high risk. So, there are a multiplicity of variables that impact the outcomes of HDT as well as induction therapy, among them age, disease stage, risk stratification along with early diagnosis.
Perhaps you perceive the analysis as oversimplification based on your own depth of knowledge on multiple myeloma? Numerous threads here at the Beacon have discussed how DR correlates with OS and PFS..have you had the opportunity to read them?
Moreover, Dr. Shain stated, as well, that it remains unanswered as to whether present day induction therapy has the same OS as those who opt for HDT...a very balanced and reasoned analysis..which allows a patient to be informed and able to make a decision for themselves when it comes to QOL.
I think I speak for many of us when I say that having a multiple myeloma expert share his or her opinion in this forum is highly valued by the vast majority of forum visitors. And it would be greatly appreciated if you responded in a far more respectful tone.
PS...is this a steroid day for you?
Dr. Shain, provided a well-thought out rationale for why HE, as a multiple myeloma EXPERT, recommends based on his EXTENSIVE clinical experience HDT following induction vs at time of relapse, which WAS the primary question that Steve had.
Were YOU seeking additional information? If so, I am sure a query would be far more likely to achieve that result than condescending indignation.
you write:
"Finally, I see no discussion -- and here I am an advocate of transplants -- of combing ASCT with immunomodulatory or other approaches in the bold mission of finding a functional cure or boasting the long-term remission rate."
Steve did not ask this, is this YOUR issue? if so,
Why are you a proponent of high-dose chemotherapy (HDT)? Let's not hide behind this ridiculous SCT euphemism, as that is not the therapy. It is highly toxic dose limiting lethality chemo that is the treatment.. What makes you believe combining HDT with ANYTHING will produce higher remission rates when it has not in over 30 years? And there have been a plethora of failed combinations. Such that to this day, there is still a 50% failure rate with HDT
What is bold about taking someone to the brink of death and then bringing them back with their own cells as the salvage for their own mortality? I think the B word here is barbaric vs. bold.
Are you unaware of how depth of response (DR) relates to PFS/OS? Many readers of the MB are aware that how DR correlates with PFS/OS is dependent on risk stratification along with cytogenetic abnormalities. IOW's someone with a 'standard risk' multiple myeloma with a PR can have a longer PFS than another patient who has CR and is high risk. So, there are a multiplicity of variables that impact the outcomes of HDT as well as induction therapy, among them age, disease stage, risk stratification along with early diagnosis.
Perhaps you perceive the analysis as oversimplification based on your own depth of knowledge on multiple myeloma? Numerous threads here at the Beacon have discussed how DR correlates with OS and PFS..have you had the opportunity to read them?
Moreover, Dr. Shain stated, as well, that it remains unanswered as to whether present day induction therapy has the same OS as those who opt for HDT...a very balanced and reasoned analysis..which allows a patient to be informed and able to make a decision for themselves when it comes to QOL.
I think I speak for many of us when I say that having a multiple myeloma expert share his or her opinion in this forum is highly valued by the vast majority of forum visitors. And it would be greatly appreciated if you responded in a far more respectful tone.
PS...is this a steroid day for you?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Steve's story and should I get a SCT?
To paraphrase something suzierose wrote yesterday, I concur with her and Ben S.
The tone of Ma Larkey's posting was completely uncalled for, and it also misrepresents many important points that Dr. Shain made.
I may not agree with Dr. Shain's approach to treating transplant-eligible patients, but I think he very fairly described the rationale for what he recommends. His explanation was not only detailed, it was balanced.
Also, like many others here, I was happy to see Dr. Shain posting again after "being away" for a while. So I was doubly disappointed when the first response to the doctor's lengthy posting was as rude and inconsiderate as Ma Larkey's.
The tone of Ma Larkey's posting was completely uncalled for, and it also misrepresents many important points that Dr. Shain made.
I may not agree with Dr. Shain's approach to treating transplant-eligible patients, but I think he very fairly described the rationale for what he recommends. His explanation was not only detailed, it was balanced.
Also, like many others here, I was happy to see Dr. Shain posting again after "being away" for a while. So I was doubly disappointed when the first response to the doctor's lengthy posting was as rude and inconsiderate as Ma Larkey's.
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TerryH
Re: Steve's story and should I get a SCT?
"Does depth of response matter? Yes. As i was reading a number of individuals suggested that by achieving a CR (complete response) the need for transplant lessoned. Interestingly, I would state that those are the individuals that will gain the most from a transplant."
This is pretty much what my hematologist/oncologist is telling me and it does make sense. My problem is that my current quality of life is back to being GREAT again. Last fall I never
dreamed that I would ever feel this good again as my recovery from heart surgery/Multiple
Myeloma/pain from my compression fracture has been a borderline miracle to this point.
Alexandra advises me to "try and be present to your life as it is right now" and that's exactly
what I have been doing - enjoying and appreciating EVERY single day.
Honestly, a stem cell transplant scares the heck out of me as there are no guarantees. I know
that some people have SCT's with great success and relatively minor side effects. Others aren't so fortunate as I've seen quite a laundry list of problems that some people have had. In addition to possible side effects what that I worry about most is my immune system as "before I got sick, I never got sick". And I mean never. My last Dr. visit where I had any type of problem at all was almost 20 years ago and it was only a minor infection.
I wish there was more info available that compared people that achieved a CR and had a SCT soon afer diagnosis vs. those who achieved a CR and opted not have a SCT or waited until 1st (or second) relapse. If a SCT gives me an extra 6-12 months I'm not all that interested, If I can get a couple extra years or more of quality life that's another story.
I'd like to thank Dr. Shain for taking the time to respond with such a great post and for answering my question. It's input from experts like him that keeps me reading the Beacon on a daily basis.
--Steve
This is pretty much what my hematologist/oncologist is telling me and it does make sense. My problem is that my current quality of life is back to being GREAT again. Last fall I never
dreamed that I would ever feel this good again as my recovery from heart surgery/Multiple
Myeloma/pain from my compression fracture has been a borderline miracle to this point.
Alexandra advises me to "try and be present to your life as it is right now" and that's exactly
what I have been doing - enjoying and appreciating EVERY single day.
Honestly, a stem cell transplant scares the heck out of me as there are no guarantees. I know
that some people have SCT's with great success and relatively minor side effects. Others aren't so fortunate as I've seen quite a laundry list of problems that some people have had. In addition to possible side effects what that I worry about most is my immune system as "before I got sick, I never got sick". And I mean never. My last Dr. visit where I had any type of problem at all was almost 20 years ago and it was only a minor infection.
I wish there was more info available that compared people that achieved a CR and had a SCT soon afer diagnosis vs. those who achieved a CR and opted not have a SCT or waited until 1st (or second) relapse. If a SCT gives me an extra 6-12 months I'm not all that interested, If I can get a couple extra years or more of quality life that's another story.
I'd like to thank Dr. Shain for taking the time to respond with such a great post and for answering my question. It's input from experts like him that keeps me reading the Beacon on a daily basis.
--Steve
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SouthernYankee - Name: Steve S.
- When were you/they diagnosed?: Sep 29, 2011
- Age at diagnosis: 56
Re: Steve's story and should I get a SCT?
"The achievement of complete response (CR) after high-dose therapy/autologous stem cell transplantation (HDT/ASCT) is a surrogate for prolonged survival in multiple myeloma; however, patients who lose their CR status within 1 year of HDT/ASCT (unsustained CR) have poor prognosis.
Thus, the identification of these patients is highly relevant.
Here, we investigate which prognostic markers can predict unsustained CR in a series of 241 patients in CR at day +100 after HDT/ASCT who were enrolled in the Spanish GEM2000 (n = 140) and GEM2005 < 65y (n = 101) trials. Twenty-nine (12%) of the 241 patients showed unsustained CR and a dismal outcome (median overall survival 39 months).
The presence of baseline high-risk cytogenetics by FISH (hazard ratio 17.3; P = .002) and persistent minimal residual disease by multiparameter flow cytometry at day +100 after HDT/ASCT (hazard ratio 8.0; P = .005) were the only independent factors that predicted unsustained CR.
Thus, these 2 parameters may help to identify patients in CR at risk of early progression after HDT/ASCT in whom novel treatments should be investigated."
http://bloodjournal.hematologylibrary.org/content/119/3/687.full
Thus, the identification of these patients is highly relevant.
Here, we investigate which prognostic markers can predict unsustained CR in a series of 241 patients in CR at day +100 after HDT/ASCT who were enrolled in the Spanish GEM2000 (n = 140) and GEM2005 < 65y (n = 101) trials. Twenty-nine (12%) of the 241 patients showed unsustained CR and a dismal outcome (median overall survival 39 months).
The presence of baseline high-risk cytogenetics by FISH (hazard ratio 17.3; P = .002) and persistent minimal residual disease by multiparameter flow cytometry at day +100 after HDT/ASCT (hazard ratio 8.0; P = .005) were the only independent factors that predicted unsustained CR.
Thus, these 2 parameters may help to identify patients in CR at risk of early progression after HDT/ASCT in whom novel treatments should be investigated."
http://bloodjournal.hematologylibrary.org/content/119/3/687.full
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Steve's story and should I get a SCT?
Hi Steve!
You write:
"I wish there was more info available that compared people that achieved a CR and had a SCT soon afer diagnosis vs. those who achieved a CR and opted not have a SCT or waited until 1st (or second) relapse"
Hopefully, one of our Beacon advisors will give us feedback on this.
I don't know if there are studies that did this type of breakout..but I agree with you this would be very useful information.
I know that there is data on outcomes following induction CR but don't know if there is data that compares those who opted for HDT following CR vs those who waited. What I do know is that the data shows HDT early or after relapse has not shown a difference. But the data, I've seen, was not necessarily broken down by those with/without CR prior to undergoing HDT.
You write:
"I wish there was more info available that compared people that achieved a CR and had a SCT soon afer diagnosis vs. those who achieved a CR and opted not have a SCT or waited until 1st (or second) relapse"
Hopefully, one of our Beacon advisors will give us feedback on this.
I don't know if there are studies that did this type of breakout..but I agree with you this would be very useful information.
I know that there is data on outcomes following induction CR but don't know if there is data that compares those who opted for HDT following CR vs those who waited. What I do know is that the data shows HDT early or after relapse has not shown a difference. But the data, I've seen, was not necessarily broken down by those with/without CR prior to undergoing HDT.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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