Hi again Suzie
You are so right: one must be mindful of the difference between progression free survival and overall survival. Another slippery descriptor I have seen is the term "trend" in studies where there is NO significant difference for overall survival. Quite meaningless -- if not deceptive!
Rearding the link I gave, if you do a search for Berenson on the site, numerous videos with him will come up. But it sounds like you have seen some of these; I have not heard them all. But I did hear him assert in one interview that the average survivial in his clinic is now more than ten years.
I also saw the news section on this site that the so-called myeloma vaccine by OncoPep/Dana Farber will enter phase 1/2a this year. So keep hope alive -- and keep your bone marrow as strong as you can.
Forums
Re: carfilzomib responses comparable to BST says Jakubowiak
hI Art...thanks for the interesting info about other clinical trials involving carfilzomib, rev and dex. It does sound like a long process, and hats off to patients who bravely set out with trying new drugs too! I am following all of this with interest, but myself was successfully treated with Velcade/dex, stem cell harvest and then transplant all within a six month timeframe. The maintenance chemo went on for another year. Am now really interested ..have a very personal connection of course. So it is very helpful to get a window into the world of many others who are also going thru treatment for multiple myeloma. And if another chemo drug comes on the market soon, so much the better, n'est-ce pas? Especially if that drug is as good as bortezomib was/is for many of us.
Re: carfilzomib responses comparable to BST says Jakubowiak
More feedback on BSCT outcomes, from ASCO 2010, being comparable to protesome inhibitor plus dex/lenalidomide:
" it was my pleasure to present the results of the RVD study, the combination of bortezomib, lenalidomide, and dexamethasone, in the treatment of newly diagnosed patients. This phase 1/ phase 2 study is now complete and we have a mature follow-up, although some of the clinical benefit outcomes remain relatively early; but we are very pleased to report that the overall response rate in this multicenter trial of 66 evaluable patients has a PR rate or better of 100%. In the phase 2 population, the VGPR rate is 74%; and indeed, the CR and near-CR rate is 52%. These are remarkably high quality in depths of responses in such a population.....snip...
in aggregate, we found that this study was very encouraging to go forward with in the context of very high response rates; durable clinical benefit; the ability to overdrive adverse cytogenetics; and also very interestingly, when we compared those patients who went to transplant with those who did not, we saw with relatively early follow-up, similar progression-free survivals. So, I think this bodes well for this regimen not just for patients eligible for transplant obviously but also for older patients as well, recognizing that it is very active with a good tolerability profile."
Paul G. Richardson, MD
Associate Professor of Medicine
Harvard Medical School
Jerome Lipper Multiple Myeloma Center @
Dana-Farber Cancer Institute
Boston, Massachusetts
" it was my pleasure to present the results of the RVD study, the combination of bortezomib, lenalidomide, and dexamethasone, in the treatment of newly diagnosed patients. This phase 1/ phase 2 study is now complete and we have a mature follow-up, although some of the clinical benefit outcomes remain relatively early; but we are very pleased to report that the overall response rate in this multicenter trial of 66 evaluable patients has a PR rate or better of 100%. In the phase 2 population, the VGPR rate is 74%; and indeed, the CR and near-CR rate is 52%. These are remarkably high quality in depths of responses in such a population.....snip...
in aggregate, we found that this study was very encouraging to go forward with in the context of very high response rates; durable clinical benefit; the ability to overdrive adverse cytogenetics; and also very interestingly, when we compared those patients who went to transplant with those who did not, we saw with relatively early follow-up, similar progression-free survivals. So, I think this bodes well for this regimen not just for patients eligible for transplant obviously but also for older patients as well, recognizing that it is very active with a good tolerability profile."
Paul G. Richardson, MD
Associate Professor of Medicine
Harvard Medical School
Jerome Lipper Multiple Myeloma Center @
Dana-Farber Cancer Institute
Boston, Massachusetts
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
New era of drugs and the old method of bone marrow transplan
Here are two very recent video discussions worth watching:
The first is with Berenson (from the 2011 ASH Meeting) and focuses on current and emerging drugs and treatments – and is worth watching for this aspect alone. What is interesting is his observation (start at 5:20) that the most recent survival curves – looking ten years back now – indicate 130 months. He contrasts this with the median of 30 months a decade ago. This leads Berenson to suggest that moving forward in this decade, multiple myeloma is well on its way to becoming a chronically manageable disease with a high quality of life – with the ultimate goal of a cure.
http://www.patientpower.info/video/update-on-the-drug-development-pipeline-for-myeloma?autoplay=1
The second -- posted a few days ago -- is a panel discussion directed to the use of stem cell transplants and featuring several prominent physicians, most notably Dr. Bensiger, the Director of the Autologous Marrow Transplant Program at Seattle. What is striking is that even he acknowledges that in this era of deep responses with the new drugs, the advantage of bone marrow transplants is increasingly questionable. Indeed, a colleague reminds the audience that stem cell transplants only came into being in the mid 1990s because the upfront treatments were not giving high response rates. This has, of course, changed today, and trials are now ongoing to appropriately evalaute this issue.
http://www.patientpower.info/video/stem-cell-transplants-for-myeloma-where-are-we-now-and-where-are-we-going?autoplay=1
The first is with Berenson (from the 2011 ASH Meeting) and focuses on current and emerging drugs and treatments – and is worth watching for this aspect alone. What is interesting is his observation (start at 5:20) that the most recent survival curves – looking ten years back now – indicate 130 months. He contrasts this with the median of 30 months a decade ago. This leads Berenson to suggest that moving forward in this decade, multiple myeloma is well on its way to becoming a chronically manageable disease with a high quality of life – with the ultimate goal of a cure.
http://www.patientpower.info/video/update-on-the-drug-development-pipeline-for-myeloma?autoplay=1
The second -- posted a few days ago -- is a panel discussion directed to the use of stem cell transplants and featuring several prominent physicians, most notably Dr. Bensiger, the Director of the Autologous Marrow Transplant Program at Seattle. What is striking is that even he acknowledges that in this era of deep responses with the new drugs, the advantage of bone marrow transplants is increasingly questionable. Indeed, a colleague reminds the audience that stem cell transplants only came into being in the mid 1990s because the upfront treatments were not giving high response rates. This has, of course, changed today, and trials are now ongoing to appropriately evalaute this issue.
http://www.patientpower.info/video/stem-cell-transplants-for-myeloma-where-are-we-now-and-where-are-we-going?autoplay=1
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Dan D
Re: carfilzomib responses comparable to BST says Jakubowiak
I am glad to see this entire thread. My husband is nearing the time where we need to make a decision about a SCT. This past weekend he told me that he is thinking against it.
My thought is that he ought to harvest those stem cells and have them just remain in storage. I don't think that it will be long before multiple myeloma is a manageable, chronic disease. So, I tend to agree with him. No SCT at this time. But maybe in the future, a SCT will be necessary, if we exhaust all other alternatives. He is young still, 45, and in otherwise good health.
I have to ask if there are a lot other people out there who have opted not to get the SCT? There are some it seems, but it really appears to be the minority, they are few and far between.
My thought is that he ought to harvest those stem cells and have them just remain in storage. I don't think that it will be long before multiple myeloma is a manageable, chronic disease. So, I tend to agree with him. No SCT at this time. But maybe in the future, a SCT will be necessary, if we exhaust all other alternatives. He is young still, 45, and in otherwise good health.
I have to ask if there are a lot other people out there who have opted not to get the SCT? There are some it seems, but it really appears to be the minority, they are few and far between.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: carfilzomib responses comparable to BST says Jakubowiak
Jenn,
I was givent the choice of CRD trial or SCT (as well as a couple other options) and chose to go with the CRD trial. My current plan is to finish the trial (I'm half way through), then possibly maintenance. I will do this until I relapse, then reevaluate options at that time. My goal is to stave off SCT as long as possible. There are a couple others that post regularly to the Beacon that are similarly trying to go with other options rather than the SCT. Regarding the stem cell harvest, I would recommend doing so, particularly while M-Protein levels are down. As you said, might as well get them harvested and in storage in case they're needed later. Also, it can sometimes get harder to harvest them later on, or to get the M-Protein levels down far enough to harvest them.
I was givent the choice of CRD trial or SCT (as well as a couple other options) and chose to go with the CRD trial. My current plan is to finish the trial (I'm half way through), then possibly maintenance. I will do this until I relapse, then reevaluate options at that time. My goal is to stave off SCT as long as possible. There are a couple others that post regularly to the Beacon that are similarly trying to go with other options rather than the SCT. Regarding the stem cell harvest, I would recommend doing so, particularly while M-Protein levels are down. As you said, might as well get them harvested and in storage in case they're needed later. Also, it can sometimes get harder to harvest them later on, or to get the M-Protein levels down far enough to harvest them.
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Kevin J - Name: Kevin J
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: carfilzomib responses comparable to BST says Jakubowiak
Jenn-
Like your husband, I am leaning towards no SCT at this point in my treatment. I have had a good response from Velcade/Cytoxan/Dex therapy with m-spike dropping from 4.1 at diagnosis to 0.6.
Current plan has me going to the transplant clinic for restating tests later this month and then harvest of the stem cells, with SCT postponed until relapse.
Like your husband, I am leaning towards no SCT at this point in my treatment. I have had a good response from Velcade/Cytoxan/Dex therapy with m-spike dropping from 4.1 at diagnosis to 0.6.
Current plan has me going to the transplant clinic for restating tests later this month and then harvest of the stem cells, with SCT postponed until relapse.
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: carfilzomib responses comparable to BST says Jakubowiak
Hey Dan!
I recently ran across these trial definitions that are worthy of noting:
BY
vs.
AT
Dr. Baccarani, made the distinction...that when the data says BY it can include patients who responded by a certain date but then relapsed...making overall numbers higher.
VS.
when the data says AT, it can only include patients who responded AT that date of cutoff.
So when comparing studies where the terminology of overall outcomes is presented by careful that you are do not believe that one is better simply because it has higher numbers, unless the criteria for inclusion in outcomes is defined the same...eg...both present AT or both present BY data.
http://biotechstrategyblog.com/2011/06/webcasts-of-eha-education-sessions-are-well-worth-watching.html/
The link is for trials that are not on multiple myeloma, however, how trials are designed and written up is key to understanding results you see from multiple myeloma trials.
I recently ran across these trial definitions that are worthy of noting:
BY
vs.
AT
Dr. Baccarani, made the distinction...that when the data says BY it can include patients who responded by a certain date but then relapsed...making overall numbers higher.
VS.
when the data says AT, it can only include patients who responded AT that date of cutoff.
So when comparing studies where the terminology of overall outcomes is presented by careful that you are do not believe that one is better simply because it has higher numbers, unless the criteria for inclusion in outcomes is defined the same...eg...both present AT or both present BY data.
http://biotechstrategyblog.com/2011/06/webcasts-of-eha-education-sessions-are-well-worth-watching.html/
The link is for trials that are not on multiple myeloma, however, how trials are designed and written up is key to understanding results you see from multiple myeloma trials.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: carfilzomib responses comparable to BST says Jakubowiak
Kevin J.
Hope all is well with you. I just noticed this thread. Way back at the beginning of the thread you wrote:
"With a stem cell transplant, you also work to beat back the cancerous M-proteins, but then collect stems cells, take heavy-duty chemo to kill off the remaing stem cells, then reintroduce the collected stem cells. In this case, you've effectively killed off a bunch of the stem cells in addition to the M-proteins, and theoretically, the only cancerous stem cells should be those reintroduced into your system by the transplant. Consequently, it seems like it would take a lot longer to reach critical mass again."
I am not sure if that is case. If you watch this video by Dr. Anderson starting at about 5:15, he states that IMID's and proteasome inhibitors can kill myeloma cells bound to the bone marrow and high dose Melphalan (alkylating agents) and steroids do not. That is basically the concept Total Therapy is based on. Use things like Melphalan early to "de-bulk" and then use your best agents (IMID's - proteasome inhibitors) in a Minimal Residual Disease setting. The rest of the Myeloma world sequences the other way - IMID/proteasome inhibitor/Dex to potential Auto (High dose Melphalan). Not saying one way or the other is better, but your using high dose Melphalan at this point may not do much for you if the the high dose Melphalan cannot kill the Myeloma cells bound to your marrow and what you are currently using and responding to can.
http://myeloma.org/ArticlePage.action?tabId=22&menuId=163&articleId=3295&aTab=-4&gParentType=link&gParentId=5510&parentIndexPageId=317
Mark
Hope all is well with you. I just noticed this thread. Way back at the beginning of the thread you wrote:
"With a stem cell transplant, you also work to beat back the cancerous M-proteins, but then collect stems cells, take heavy-duty chemo to kill off the remaing stem cells, then reintroduce the collected stem cells. In this case, you've effectively killed off a bunch of the stem cells in addition to the M-proteins, and theoretically, the only cancerous stem cells should be those reintroduced into your system by the transplant. Consequently, it seems like it would take a lot longer to reach critical mass again."
I am not sure if that is case. If you watch this video by Dr. Anderson starting at about 5:15, he states that IMID's and proteasome inhibitors can kill myeloma cells bound to the bone marrow and high dose Melphalan (alkylating agents) and steroids do not. That is basically the concept Total Therapy is based on. Use things like Melphalan early to "de-bulk" and then use your best agents (IMID's - proteasome inhibitors) in a Minimal Residual Disease setting. The rest of the Myeloma world sequences the other way - IMID/proteasome inhibitor/Dex to potential Auto (High dose Melphalan). Not saying one way or the other is better, but your using high dose Melphalan at this point may not do much for you if the the high dose Melphalan cannot kill the Myeloma cells bound to your marrow and what you are currently using and responding to can.
http://myeloma.org/ArticlePage.action?tabId=22&menuId=163&articleId=3295&aTab=-4&gParentType=link&gParentId=5510&parentIndexPageId=317
Mark
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Mark
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