I am sure that many of you will be interested in this journal article that I came across this evening. The article is titled "Curability of Multiple Myeloma", and is available in full (and free) at this link:
http://www.hindawi.com/journals/bmr/2012/916479/
Here is the abstract:
"Among 792 patients with multiple myeloma treated from 1987 to 2010 and assessed after 18 months, there were 167 patients with complete remission. For those 60 patients treated between 1987–1998 and with long followup, the latest relapse occurred after 11.8 years, so that 13 patients have remained in sustained complete remission for longer than 12 years (range 12–22 years). These results suggest that 3% of all patients treated during that period may be cured of multiple myeloma. In addition to immunofixation, more sensitive techniques for the detection of residual disease should be applied more consistently in patients with apparent complete remission in order to identify those with potential cure."
There are two aspects of this study that will stir a lot of controversy, and I will be curious to hear what people have to say.
First, the patients who achieved a complete response in the earlier period of the study -- 1997-1998 -- lived longer than those who achieved a response in the later period, 1999-2010. The later period corresponds to the period when novel myeloma treatments -- thalidomide, Velcade, and Revlimid -- became available.
Apparently, this result is rather well known. The newer anti-myeloma drugs make it possible for more myeloma patients to achieve a complete response, but the response is less durable than was formerly the case in patients achieving a complete response.
Second, a MUCH higher percentage of patients achieving a complete response in the later years of the study had an early stem cell transplant early compared to those in the earlier years of the study. 35 percent of the patients achieving a complete response before 1999 had a stem cell transplant within 12 months of diagnosis; 82 percent of the patients in the later years had a stem cell transplant within 12 months of diagnosis.
In other words, the patients in the complete response group that lived shorter were much more likely to receive a stem cell transplant early in their treatment.
Useful graphs and tables:
Survival curves for the two patient groups (the top graph is the easiest to understand):
http://www.hindawi.com/journals/bmr/2012/916479/fig2/
Basic information about the two patient groups:
(note: stem cell transplant is denoted "HDT" -- "high-dose therapy"; "No."="number")
http://www.hindawi.com/journals/bmr/2012/916479/tab1/
Forums
Re: Curability of Multiple Myeloma - New Journal Article
Hi Ricardo, Thanks for the abstract and links to that article. That is heartening, to say the least! Since my diagnosis, I became aware that three of my friends had husbands or their Dad who had died of multiple myeloma. They were all being treated before the new drugs were in widespread use. I have reassured these friends that things are getting better now, due to us having the new chemotherapies available....they were very worried about my survival of course, and now , three years later , have relaxed a bit when talking to me. It was rare to have a long survival, let alone CR, in the days before the new drugs, or at least that is my impression. How nice to hear of patients who are in effect 'cured'...hope they continue to track these patients too, and that they continue to do so well.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Curability of Multiple Myeloma - New Journal Article
Thanks for bringing this article to everyone's attention, Ricardo.
As I reviewed your summary of the results, it struck me that they may be part of the rationale for intensive treatment regimens like VDT-PACE that places like Arkansas have used for newly diagnosed patients.
The study you pointed out suggests that something about the older myeloma drugs makes them able to bring about (essentially) a cure in a small number of patients, and the novel agents don't seem to be able to do that ... at least not so far.
But the novel agents give you much higher complete response rates, which is a good thing in terms of extending survival, even if the higher complete response rates may not translate into patients that are effectively cured.
So why not combine older drugs with the novel agents into a combination regimen? That's what regimens like VDT-PACE do.
Interesting stuff.
As I reviewed your summary of the results, it struck me that they may be part of the rationale for intensive treatment regimens like VDT-PACE that places like Arkansas have used for newly diagnosed patients.
The study you pointed out suggests that something about the older myeloma drugs makes them able to bring about (essentially) a cure in a small number of patients, and the novel agents don't seem to be able to do that ... at least not so far.
But the novel agents give you much higher complete response rates, which is a good thing in terms of extending survival, even if the higher complete response rates may not translate into patients that are effectively cured.
So why not combine older drugs with the novel agents into a combination regimen? That's what regimens like VDT-PACE do.
Interesting stuff.
-
Terry H
Re: Curability of Multiple Myeloma - New Journal Article
Hi Ricardo!!
Interesting read.
I was wondering how CR was measured, especially since it was only 3% of patients. when you write:
"First, the patients who achieved a complete response in the earlier period of the study -- 1997-1998 -- lived longer than those who achieved a response in the later period, 1999-2010. The later period corresponds to the period when novel myeloma treatments -- thalidomide, Velcade, and Revlimid -- became available.
Apparently, this result is rather well known. The newer anti-myeloma drugs make it possible for more myeloma patients to achieve a complete response, but the response is less durable than was formerly the case in patients achieving a complete response."
I agree what we have today is far more individuals who have a CR, live a better QOL, vs. the earlier period when basically folks simply died following HDT, and the lucky 3% had a sustained CR? Is that progress? I would say Yes, because we are treating far more patients successfully in terms of PFS.
The study of the earlier period also underscores that hematological surrogate testing is not the best parameter for gauging cure since so few actually survived for 12 years. Whereas today we see far more patients surviving longer since many more achieve a CR even if it is not as sustainable. The clear issue here is the tests that are used as criteria to measure CR are woefully inadequate particularly as pertains to any measure that approaches the term cure.
"35 percent of the patients achieving a complete response before 1999 had a stem cell transplant within 12 months of diagnosis; 82 percent of the patients in the later years had a stem cell transplant within 12 months of diagnosis."
I attribute this to the medical community figuring out how to get re-imbursed for SCT by coding it as 'therapy' vs it being a medical error (lethal doses) and 'salvage' rescue treatment.
Just my 2 cents.
Interesting read.
I was wondering how CR was measured, especially since it was only 3% of patients. when you write:
"First, the patients who achieved a complete response in the earlier period of the study -- 1997-1998 -- lived longer than those who achieved a response in the later period, 1999-2010. The later period corresponds to the period when novel myeloma treatments -- thalidomide, Velcade, and Revlimid -- became available.
Apparently, this result is rather well known. The newer anti-myeloma drugs make it possible for more myeloma patients to achieve a complete response, but the response is less durable than was formerly the case in patients achieving a complete response."
I agree what we have today is far more individuals who have a CR, live a better QOL, vs. the earlier period when basically folks simply died following HDT, and the lucky 3% had a sustained CR? Is that progress? I would say Yes, because we are treating far more patients successfully in terms of PFS.
The study of the earlier period also underscores that hematological surrogate testing is not the best parameter for gauging cure since so few actually survived for 12 years. Whereas today we see far more patients surviving longer since many more achieve a CR even if it is not as sustainable. The clear issue here is the tests that are used as criteria to measure CR are woefully inadequate particularly as pertains to any measure that approaches the term cure.
"35 percent of the patients achieving a complete response before 1999 had a stem cell transplant within 12 months of diagnosis; 82 percent of the patients in the later years had a stem cell transplant within 12 months of diagnosis."
I attribute this to the medical community figuring out how to get re-imbursed for SCT by coding it as 'therapy' vs it being a medical error (lethal doses) and 'salvage' rescue treatment.
Just my 2 cents.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Curability of Multiple Myeloma - New Journal Article
Hi Nancy and Suzierose!
Thanks for your comments.
Suzierose ... I think I didn't describe the results clearly enough.
Many more than just 3 percent in the early sample of myeloma patients achieved CR. In fact, 16 percent achieved CR. Among those 16 percent was a group -- 3 percent of all patients in the early sample -- who sustained their response more than 12 years. This is the group that the authors describe as effectively having been cured.
In comparison, a full 36 percent of the patients in the later sample achieved a CR, more than twice the share of patients that achieved a CR in the earlier period. Yet, if I understand the paper correctly, none of these patients appear likely to sustain their CR for more than 12 years.
You can see these data in the table I linked to before,
http://www.hindawi.com/journals/bmr/2012/916479/tab1/
As to the fact that stem cell transplants are carried out much more frequently now than in the past. Yes, I'm sure that things would have been different if the procedure wasn't reimbursed. I suspect, however, that the reason it got reimbursed is that there were data showing that it increased the share of patients achieving CR, and that achieving CR is linked to longer survival.
Thanks for your comments.
Suzierose ... I think I didn't describe the results clearly enough.
Many more than just 3 percent in the early sample of myeloma patients achieved CR. In fact, 16 percent achieved CR. Among those 16 percent was a group -- 3 percent of all patients in the early sample -- who sustained their response more than 12 years. This is the group that the authors describe as effectively having been cured.
In comparison, a full 36 percent of the patients in the later sample achieved a CR, more than twice the share of patients that achieved a CR in the earlier period. Yet, if I understand the paper correctly, none of these patients appear likely to sustain their CR for more than 12 years.
You can see these data in the table I linked to before,
http://www.hindawi.com/journals/bmr/2012/916479/tab1/
As to the fact that stem cell transplants are carried out much more frequently now than in the past. Yes, I'm sure that things would have been different if the procedure wasn't reimbursed. I suspect, however, that the reason it got reimbursed is that there were data showing that it increased the share of patients achieving CR, and that achieving CR is linked to longer survival.
Re: Curability of Multiple Myeloma - New Journal Article
Hi Ricardo,
Seems like we are both keyed on the 3%..I may not have been clear .I did note that many others received CR and I was focused on the 3% as they had the sustained CR for 12 years, which is rare.
"In comparison, a full 36 percent of the patients in the later sample achieved a CR, more than twice the share of patients that achieved a CR in the earlier period. Yet, if I understand the paper correctly, none of these patients appear likely to sustain their CR for more than 12 years."
I am interpreting the sustained CR for 12 years, as rare and not necessarily reproducible. I think there would need to be a more extensive profile of those 3% in terms of disease status when therapy started, age, along with disease aggressiveness in order to assess the common variables for that rare (3%) subset population. Secondly, we would have to know how CR was determined during that period. The paper did not discuss how the CR was determined. So, it is difficult to make a determination if 'twice the share of patients achieved a CR" in that period vs. what we see today. IOW's I think the criteria for CR is more stringent in the later period, as testing and criteria evolved as to what constitutes a CR and thus those CR's are likely to be more meaningful even if not sustainable.
While the CR may not be sustainable survival was longer in latter group.
http://www.hindawi.com/journals/bmr/2012/916479/fig1/
A question we could ask is what percent of CR's today(using the new criteria) are sustainable with/without HDT. Lastly, the CR comparsion between studies retrospectively is soft, due to the inherent bias/flaw of restrospective studies.
"Among all patients treated, frequencies of CR have increased from approximately 5% prior to 1987, to approximately 15% for those treated between 1987–1998, and to approximately 30% for those treated in recent year"
These outcomes parallel the history and use of HDT to result in CR for multiple myeloma as conventional therapy was unable to produce CR. This is what ushered in the use of HDT vs conventional dosed chemotherapy to increase CR. I would also like to see how the mortality rates changed from 1987 to 1998 as well as what doses of HDT were used. One other thought is the age of patients, are older patients (60+) as likely to achieve CR? It seems nowadays that we are seeing "younger" patients with multiple myeloma opt for HDT.
As you know, CR has been traditionally assessed based on level of detectability or sensitivity of the tests. CR was simply not obtainable in high numbers before protesome/IMID therapy, despite HDT. The increase in CR (30%) is a very positive outcome and correlates with the use of new novel agents which is why they were heralded as 'revolutionizing' multiple myeloma therapy outcomes, as a CR was so difficult to achieve even with HDT.
Are you thinking that the 3% warrants using HDT regimens that were popular then vs now OR that how we measure CR today is soft (hematologic vs molecular), thus the higher numbers?
Regarding SCT, the higher CR has not been shown to be attributable to salvage therapy, rather it is essential to reduce mortality from HDT. Coding it as therapy allows the re-imbursement vs it being paid as a treatment to manage a life threatening Adverse event. And you are absolutely right that HDT did result in higher percentages of CR vs. conventional chemotherapy which validated the use of lethal-dose limiting therapy necessitating salvage.
Seems like we are both keyed on the 3%..I may not have been clear .I did note that many others received CR and I was focused on the 3% as they had the sustained CR for 12 years, which is rare.
"In comparison, a full 36 percent of the patients in the later sample achieved a CR, more than twice the share of patients that achieved a CR in the earlier period. Yet, if I understand the paper correctly, none of these patients appear likely to sustain their CR for more than 12 years."
I am interpreting the sustained CR for 12 years, as rare and not necessarily reproducible. I think there would need to be a more extensive profile of those 3% in terms of disease status when therapy started, age, along with disease aggressiveness in order to assess the common variables for that rare (3%) subset population. Secondly, we would have to know how CR was determined during that period. The paper did not discuss how the CR was determined. So, it is difficult to make a determination if 'twice the share of patients achieved a CR" in that period vs. what we see today. IOW's I think the criteria for CR is more stringent in the later period, as testing and criteria evolved as to what constitutes a CR and thus those CR's are likely to be more meaningful even if not sustainable.
While the CR may not be sustainable survival was longer in latter group.
http://www.hindawi.com/journals/bmr/2012/916479/fig1/
A question we could ask is what percent of CR's today(using the new criteria) are sustainable with/without HDT. Lastly, the CR comparsion between studies retrospectively is soft, due to the inherent bias/flaw of restrospective studies.
"Among all patients treated, frequencies of CR have increased from approximately 5% prior to 1987, to approximately 15% for those treated between 1987–1998, and to approximately 30% for those treated in recent year"
These outcomes parallel the history and use of HDT to result in CR for multiple myeloma as conventional therapy was unable to produce CR. This is what ushered in the use of HDT vs conventional dosed chemotherapy to increase CR. I would also like to see how the mortality rates changed from 1987 to 1998 as well as what doses of HDT were used. One other thought is the age of patients, are older patients (60+) as likely to achieve CR? It seems nowadays that we are seeing "younger" patients with multiple myeloma opt for HDT.
As you know, CR has been traditionally assessed based on level of detectability or sensitivity of the tests. CR was simply not obtainable in high numbers before protesome/IMID therapy, despite HDT. The increase in CR (30%) is a very positive outcome and correlates with the use of new novel agents which is why they were heralded as 'revolutionizing' multiple myeloma therapy outcomes, as a CR was so difficult to achieve even with HDT.
Are you thinking that the 3% warrants using HDT regimens that were popular then vs now OR that how we measure CR today is soft (hematologic vs molecular), thus the higher numbers?
Regarding SCT, the higher CR has not been shown to be attributable to salvage therapy, rather it is essential to reduce mortality from HDT. Coding it as therapy allows the re-imbursement vs it being paid as a treatment to manage a life threatening Adverse event. And you are absolutely right that HDT did result in higher percentages of CR vs. conventional chemotherapy which validated the use of lethal-dose limiting therapy necessitating salvage.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Curability of Multiple Myeloma - New Journal Article
If the criteria for achieving a CR have become more strict over time, then it is all the more impressive that the share of patients achieving a CR was so much higher in the later time period than it was in the earlier time period.
But, as some have already said, that's relatively well known, being the consequence of both the introduction of the novel myeloma therapies and the wider use of stem cell transplantation.
Speaking of stem cell transplants, can we agree to focus on facts and data when discussing them, rather than arguing semantics and using emotional language?
Look, we don't call the stitches that people receive after a major operation a "treatment to manage a life threatening adverse event." Yet the fact is that if we didn't stitch people up after an operation, they would probably bleed out or get an infection and die.
Stem cell transplants are part and parcel of the high dose chemotherapy that is commonly used with myeloma patients. Just like operations aren't done without stitching people up afterwards, high-dose chemo isn't done with myeloma patients without doing an auto (or allo) transplant afterwards.
Moreover, the treatment-related mortality rate from auto transplants is very, very low.
So calling high dose chemotherapy "potentially fatal" is like calling an appendectomy "potentially fatal".
If people here want to keep using emotional language that might scare or confuse people who are less knowledgeable, I think that's unfortunate. I, for one, hope we can stick to facts instead.
But, as some have already said, that's relatively well known, being the consequence of both the introduction of the novel myeloma therapies and the wider use of stem cell transplantation.
Speaking of stem cell transplants, can we agree to focus on facts and data when discussing them, rather than arguing semantics and using emotional language?
Look, we don't call the stitches that people receive after a major operation a "treatment to manage a life threatening adverse event." Yet the fact is that if we didn't stitch people up after an operation, they would probably bleed out or get an infection and die.
Stem cell transplants are part and parcel of the high dose chemotherapy that is commonly used with myeloma patients. Just like operations aren't done without stitching people up afterwards, high-dose chemo isn't done with myeloma patients without doing an auto (or allo) transplant afterwards.
Moreover, the treatment-related mortality rate from auto transplants is very, very low.
So calling high dose chemotherapy "potentially fatal" is like calling an appendectomy "potentially fatal".
If people here want to keep using emotional language that might scare or confuse people who are less knowledgeable, I think that's unfortunate. I, for one, hope we can stick to facts instead.
-
TerryH
Re: Curability of Multiple Myeloma - New Journal Article
Hi Terry,
I agree the outcomes are more impressive in latter group.
"Speaking of stem cell transplants, can we agree to focus on facts and data when discussing them, rather than arguing semantics and using emotional language?"
Sure.
However, I know it is factual (not semantics) to state what the therapy is and to distinguish HDT lethal doses as the therapy vs auto stem transplants. Terry, do you find those facts disputable? Is it emotional or factual to state what therapy is or is not? Is your language emotional vs mine?
Let's be clear, autoSCT is not therapy and the issue is that too many patients believe that the SCT is therapy, it is not. If those facts are disconcerting, they should be and no one should labor under the delusion that autoSCT is therapy, based on facts clearly demonstrating otherwise. IOW's what you appear to be calling emotional language is actually facts and the entire problem IS that folks see it as 'emotional". If you are able to show or demonstrate otherwise, I am ALL ears.
"Look, we don't call the stitches that people receive after a major operation a "treatment to manage a life threatening adverse event." Yet the fact is that if we didn't stitch people up after an operation, they would probably bleed out or get an infection and die."
NOPE. No physician recommends 'stiches" That is the issue. No physician says to a patient you should consider 'stitches'...why is that? Because stitches are NOT the therapy. Let's suppose the surgeon failed to do a great job and it DID result in a life-threatening infection...you would be WARNED prior to the surgery and there is a disclosure form for you to sign. What the physician does not do is "recommend" taking powerful antibiotics as a result of his surgical technique PRIOR to the therapy. Nor does the operation result in you 'needing stitches' because the surgery created a life threatening event or the patient thinking being stitched WAS THE therapy. While I recognize that patients do like the delusion of thinking SCT is therapy it is not. That is not emotion.
IOW's the physician would have to 'recommend' a life threatening infection as 'therapy' due to the surgical technique that precedes the operation. That would result in the patient asking more questions about the 'surgical procedure" (HDT) and not simply acquiesing to what they believe is therapy. An ADVERSE EVENT is NOT therapy.
Patients have choices and every patient should know what they are selecting. Making informed choices is the entire point of not being swept up in what is ACTUALLY the emotional language of 'recommending" a SCT.
"Moreover, the treatment-related mortality rate from auto transplants is very, very low."
But the failure rate is 50%...that is not low...even if you do not die.
"So calling high dose chemotherapy "potentially fatal" is like calling an appendectomy "potentially fatal".
FALSE. Patients receive FATAL doses!! They are RESCUED with their own stem cells. An appendectomy is 'potentially' fatal but that is due to error! It is not due to intentionally doing a procedure that is KNOWN to be lethal and PLANNING to RESCUE you. That is a huge difference. And the fact that patients are laboring under a wholly false assumption when they select the FATAL doses is nowhere near comparable. IOW's you do not go into the appendectomy planning to be rescued as part of 'therapy'.
Additionally, I should state that had I not asked, I too would have labored under the completely FALSE belief that autoSCT was therapy. Being informed makes a difference.
"If people here want to keep using emotional language that might scare or confuse people who are less knowledgeable, I think that's unfortunate. I, for one, hope we can stick to facts instead."
The language I've used is FACTUAL, the emotional part is the deception.
No one should be scared or confused.
What they should be, hopefully, is informed as to what the choice is in terms of therapy. The way you are speaking about this underscores why the FACTS are not known and folks think they are getting something else. Physicians recognized that folks have far more reservations about lethal doses of chemotherapy, which is the travesty of playing on patients emotions to make them 'feel' the autoSCT is therapy. Sounds soooooo much better to 'recommend' autoSCT vs lethal high doses, doesn't it? ...which is why language and FACTS are inDEED important. So just who is using emotional/semantic language? IOW's no one should be scared or confused..they should understand the real choice. If I choose Lethal doses that is my decision to make vs believing I am choosing a SALVAGE procedure to save me from the true lethal dose therapy.
Just curious, what are the FACTS, you would stick to?
Do you believe the autoSCT is therapy?
"Recommending" auto SCT as therapy is the problem.
Worst of all it is false hope...since 50% of autoSCT's fail.
Patients 'emotionally' think getting their own diseased stem cells back is therapy when it is not. That is a big problem. I do not try to scare or confuse people. My issue is to be informed, know your choices and make your decision accordingly. Don't however, believe that 'recommending' autoSCT is therapy. Point of fact, any patient asking their physician what I have stated FACTUALLY will learn precisely that.
Now, if you would simply like me to refrain from giving the FACTS ..ok....but unless you demonstrate the FACTS are otherwise...please do not categorize it as emotional language. I emphasize this because the FACTS are the discussion each patient should have with their physician. ...and they don't because they are lulled into a false perception that the autoSCT is the therapy and it is not. Also, knowing these FACTS should make every single patient informed, rather than confused or scared. It should empower them to make the best choice for themselves.
I am more than happy to discuss any FACTS that show otherwise.
I want to acquiese to your compassion yet it is difficult since I believe in informed choices.
Forgive me for that.
...
I agree the outcomes are more impressive in latter group.
"Speaking of stem cell transplants, can we agree to focus on facts and data when discussing them, rather than arguing semantics and using emotional language?"
Sure.
However, I know it is factual (not semantics) to state what the therapy is and to distinguish HDT lethal doses as the therapy vs auto stem transplants. Terry, do you find those facts disputable? Is it emotional or factual to state what therapy is or is not? Is your language emotional vs mine?
Let's be clear, autoSCT is not therapy and the issue is that too many patients believe that the SCT is therapy, it is not. If those facts are disconcerting, they should be and no one should labor under the delusion that autoSCT is therapy, based on facts clearly demonstrating otherwise. IOW's what you appear to be calling emotional language is actually facts and the entire problem IS that folks see it as 'emotional". If you are able to show or demonstrate otherwise, I am ALL ears.
"Look, we don't call the stitches that people receive after a major operation a "treatment to manage a life threatening adverse event." Yet the fact is that if we didn't stitch people up after an operation, they would probably bleed out or get an infection and die."
NOPE. No physician recommends 'stiches" That is the issue. No physician says to a patient you should consider 'stitches'...why is that? Because stitches are NOT the therapy. Let's suppose the surgeon failed to do a great job and it DID result in a life-threatening infection...you would be WARNED prior to the surgery and there is a disclosure form for you to sign. What the physician does not do is "recommend" taking powerful antibiotics as a result of his surgical technique PRIOR to the therapy. Nor does the operation result in you 'needing stitches' because the surgery created a life threatening event or the patient thinking being stitched WAS THE therapy. While I recognize that patients do like the delusion of thinking SCT is therapy it is not. That is not emotion.
IOW's the physician would have to 'recommend' a life threatening infection as 'therapy' due to the surgical technique that precedes the operation. That would result in the patient asking more questions about the 'surgical procedure" (HDT) and not simply acquiesing to what they believe is therapy. An ADVERSE EVENT is NOT therapy.
Patients have choices and every patient should know what they are selecting. Making informed choices is the entire point of not being swept up in what is ACTUALLY the emotional language of 'recommending" a SCT.
"Moreover, the treatment-related mortality rate from auto transplants is very, very low."
But the failure rate is 50%...that is not low...even if you do not die.
"So calling high dose chemotherapy "potentially fatal" is like calling an appendectomy "potentially fatal".
FALSE. Patients receive FATAL doses!! They are RESCUED with their own stem cells. An appendectomy is 'potentially' fatal but that is due to error! It is not due to intentionally doing a procedure that is KNOWN to be lethal and PLANNING to RESCUE you. That is a huge difference. And the fact that patients are laboring under a wholly false assumption when they select the FATAL doses is nowhere near comparable. IOW's you do not go into the appendectomy planning to be rescued as part of 'therapy'.
Additionally, I should state that had I not asked, I too would have labored under the completely FALSE belief that autoSCT was therapy. Being informed makes a difference.
"If people here want to keep using emotional language that might scare or confuse people who are less knowledgeable, I think that's unfortunate. I, for one, hope we can stick to facts instead."
The language I've used is FACTUAL, the emotional part is the deception.
No one should be scared or confused.
What they should be, hopefully, is informed as to what the choice is in terms of therapy. The way you are speaking about this underscores why the FACTS are not known and folks think they are getting something else. Physicians recognized that folks have far more reservations about lethal doses of chemotherapy, which is the travesty of playing on patients emotions to make them 'feel' the autoSCT is therapy. Sounds soooooo much better to 'recommend' autoSCT vs lethal high doses, doesn't it? ...which is why language and FACTS are inDEED important. So just who is using emotional/semantic language? IOW's no one should be scared or confused..they should understand the real choice. If I choose Lethal doses that is my decision to make vs believing I am choosing a SALVAGE procedure to save me from the true lethal dose therapy.
Just curious, what are the FACTS, you would stick to?
Do you believe the autoSCT is therapy?
"Recommending" auto SCT as therapy is the problem.
Worst of all it is false hope...since 50% of autoSCT's fail.
Patients 'emotionally' think getting their own diseased stem cells back is therapy when it is not. That is a big problem. I do not try to scare or confuse people. My issue is to be informed, know your choices and make your decision accordingly. Don't however, believe that 'recommending' autoSCT is therapy. Point of fact, any patient asking their physician what I have stated FACTUALLY will learn precisely that.
Now, if you would simply like me to refrain from giving the FACTS ..ok....but unless you demonstrate the FACTS are otherwise...please do not categorize it as emotional language. I emphasize this because the FACTS are the discussion each patient should have with their physician. ...and they don't because they are lulled into a false perception that the autoSCT is the therapy and it is not. Also, knowing these FACTS should make every single patient informed, rather than confused or scared. It should empower them to make the best choice for themselves.
I am more than happy to discuss any FACTS that show otherwise.
I want to acquiese to your compassion yet it is difficult since I believe in informed choices.
Forgive me for that.
...
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Curability of Multiple Myeloma - New Journal Article
TerryH,
I think you make some great points in this thread. With respect to using VTD-PACE early, I think it brings up the issue of how do we use alkylators (Melphalan, Cytoxan, etc) in the era of novel agents. I did not ever do VTD PACE so I have never experienced the side effects, etc. It does have the advantage of being done quickly - I believe it is given over a week. I think the alkylators are very good at debulking, meaning they are good during Induction. Take this study on Velcade/Cytoxan/DEX for instance. Here are the results for patients that did 4 cycles:
"For the 28 patients who completed all four cycles of therapy, the CR/nCR rate was 46% and VGPR rate was 71%. All patients undergoing stem cell harvest had a successful collection."
http://www.ncbi.nlm.nih.gov/pubmed/19225538
With respect to why there were long term survivors in the earlier era, IMO long cycles of novel agents are training the cancer cells and patients immune systems to fight off Chemo. In the earlier time period patients did not do never ending cycles of therapy. I have posted this before, but I need to repost to back up my comment that the novel agents may be training the patients immune system to help the cancer survive long term:
"Multiple myeloma cancer cells thwart many of the drugs used against them by causing nearby cells to turn traitor – to switch from defending the body against disease to shielding the myeloma cells from harm – Dana-Farber Cancer Institute scientists report in the October issue of Cancer Cell."
"The researchers found that immune-system cells known as plasmacytoid dendritic cells (pDCs) essentially assume a new identity in the presence of myeloma – promoting the growth and survival of malignant myeloma cells, helping them fend off drugs, and depleting the overall strength of the immune system."
http://www.sciencedaily.com/releases/2009/10/091005123043.htm
IMO the way Myeloma Doctors, mostly US based ones, are using the novel agents are why we see that in the above study. You do not cure patients with low doses and never ending cycles of therapy. I found it refreshing to hear Robin Roberts discuss her battle with MDS. There is no "low and slow" and "lets try and turn this into something chronic" in her. She rocks! She has the right attitude - lets cure it now, not hope something better comes along in the future.
Mark
I think you make some great points in this thread. With respect to using VTD-PACE early, I think it brings up the issue of how do we use alkylators (Melphalan, Cytoxan, etc) in the era of novel agents. I did not ever do VTD PACE so I have never experienced the side effects, etc. It does have the advantage of being done quickly - I believe it is given over a week. I think the alkylators are very good at debulking, meaning they are good during Induction. Take this study on Velcade/Cytoxan/DEX for instance. Here are the results for patients that did 4 cycles:
"For the 28 patients who completed all four cycles of therapy, the CR/nCR rate was 46% and VGPR rate was 71%. All patients undergoing stem cell harvest had a successful collection."
http://www.ncbi.nlm.nih.gov/pubmed/19225538
With respect to why there were long term survivors in the earlier era, IMO long cycles of novel agents are training the cancer cells and patients immune systems to fight off Chemo. In the earlier time period patients did not do never ending cycles of therapy. I have posted this before, but I need to repost to back up my comment that the novel agents may be training the patients immune system to help the cancer survive long term:
"Multiple myeloma cancer cells thwart many of the drugs used against them by causing nearby cells to turn traitor – to switch from defending the body against disease to shielding the myeloma cells from harm – Dana-Farber Cancer Institute scientists report in the October issue of Cancer Cell."
"The researchers found that immune-system cells known as plasmacytoid dendritic cells (pDCs) essentially assume a new identity in the presence of myeloma – promoting the growth and survival of malignant myeloma cells, helping them fend off drugs, and depleting the overall strength of the immune system."
http://www.sciencedaily.com/releases/2009/10/091005123043.htm
IMO the way Myeloma Doctors, mostly US based ones, are using the novel agents are why we see that in the above study. You do not cure patients with low doses and never ending cycles of therapy. I found it refreshing to hear Robin Roberts discuss her battle with MDS. There is no "low and slow" and "lets try and turn this into something chronic" in her. She rocks! She has the right attitude - lets cure it now, not hope something better comes along in the future.
Mark
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Mark
Re: Curability of Multiple Myeloma - New Journal Article
Hi Mark!
I love Robin Roberts courage...and her attitude does rock!
OTOH, you likely also know she had breast cancer and developing a secondary cancer post therapy for that is not uncommon?
"Therapy-related myelodysplasia (t-MDS) and acute myeloid leukemia (t-AML) after high-dose chemotherapy (HD-CT) and autologous stem cell transplantation (ASCT) for malignant diseases have become an important problem. The actuarial risk has varied, but has often been high if compared to the risk after conventional therapy. Prior chemotherapy with large cumulative doses of alkylating agents is the most important risk factor."
http://bloodjournal.hematologylibrary.org/content/95/11/3273.long
https://docs.google.com/viewer?a=v&q=cache:x9Ji28h-QWgJ:www.biomedcentral.com/content/pdf/1471-2407-11-260.pdf+MDS+post+breast+cancer+therapy+incidence&hl=en&gl=us&pid=bl&srcid=ADGEEShjguOBh2xzPp_TEksuZHNhnzZE5-ct41eB-Ug4Kj7LTWIiqMVq1JTRQjNIy4Dny_0Maf3loW75GyzB9ax_ZEcURB9_S2atI_HQKFjYWs0SA-dbFXY0BPktSa9BzzYp_MamfEi5&sig=AHIEtbRWHH56ypbJQCQjw5zqu0s8uki-Ww
Secondary cancers post HDT with akylators and post autoSCT is real.
I love Robin Roberts courage...and her attitude does rock!
OTOH, you likely also know she had breast cancer and developing a secondary cancer post therapy for that is not uncommon?
"Therapy-related myelodysplasia (t-MDS) and acute myeloid leukemia (t-AML) after high-dose chemotherapy (HD-CT) and autologous stem cell transplantation (ASCT) for malignant diseases have become an important problem. The actuarial risk has varied, but has often been high if compared to the risk after conventional therapy. Prior chemotherapy with large cumulative doses of alkylating agents is the most important risk factor."
http://bloodjournal.hematologylibrary.org/content/95/11/3273.long
https://docs.google.com/viewer?a=v&q=cache:x9Ji28h-QWgJ:www.biomedcentral.com/content/pdf/1471-2407-11-260.pdf+MDS+post+breast+cancer+therapy+incidence&hl=en&gl=us&pid=bl&srcid=ADGEEShjguOBh2xzPp_TEksuZHNhnzZE5-ct41eB-Ug4Kj7LTWIiqMVq1JTRQjNIy4Dny_0Maf3loW75GyzB9ax_ZEcURB9_S2atI_HQKFjYWs0SA-dbFXY0BPktSa9BzzYp_MamfEi5&sig=AHIEtbRWHH56ypbJQCQjw5zqu0s8uki-Ww
Secondary cancers post HDT with akylators and post autoSCT is real.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
24 posts
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