Great point by Lyn. I will post a link to survival graphs of what are considered high-intermediate risk diffuse large B-cell lymphoma patients treated with R-CHOP or R-CHOP plus an auto for those interested in seeing what successful blood cancer therapy graphs look like. For those not familiar, R-CHOP is the most common chemotherapy combination for this disease.
This is what progression-free survival graphs look like for curable diseases. Note how the risk of relapse is very low after 3 years (other than the high-risk R-CHOP only group) and how the percentage of patients that relapse is less than 50% (other than the high-risk R-CHOP only group, which is right around 50%). Note that in the R-CHOP with auto high intermediate group no relapses after 3 years. Standard-risk myeloma graphs are not even close to looking nearly as good as these.
http://www.newevidence.com/oncology/entries/Randomized_phase_III_U_S_Canadian_intergroup/
Forums
Re: Is the relapse rate for myeloma really 100 percent?
Thanks for posting the link, Mark, it does lead to several studies. I find it interesting that some of the same drugs are used in CLL as are in myeloma, at least in studies. For example, Revlimid (lenalidomide) has been tried in CLL, and it is approved for myeloma. On the other hand, bendamustine [Treanda] is used in CLL, and it is not approved for myeloma, although it has been tried for that.
I guess the main message here is that the rituximab [Rituxan], used in combo with other chemotherapies, is doing a good job. It is an 'antibody'-type of drug.
Truly, CLL seems to have better rates of remission than myeloma.
I guess the main message here is that the rituximab [Rituxan], used in combo with other chemotherapies, is doing a good job. It is an 'antibody'-type of drug.
Truly, CLL seems to have better rates of remission than myeloma.
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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: Is the relapse rate for myeloma really 100 percent?
"Truly, CLL seems to have better rates of remission than myeloma."
I was diagnosed with CLL in 2001 and started seeing an oncologist for it in 2006. It was an appointment for CLL that revealed my my multiple myeloma. I never had any symptoms from the CLL and it was revealed during some blood test for another cancer.
I'm still in remission for the CLL after Velcade / prednisone treatments and a SCT for my multiple myeloma. I have come out of remission for the multiple myeloma however.
At the time of my multiple myeloma diagnosis, which was severe, my CLL had also spiked considerably. I don't know if there is any relationship between the two, but it does spark my curiosity.
I was diagnosed with CLL in 2001 and started seeing an oncologist for it in 2006. It was an appointment for CLL that revealed my my multiple myeloma. I never had any symptoms from the CLL and it was revealed during some blood test for another cancer.
I'm still in remission for the CLL after Velcade / prednisone treatments and a SCT for my multiple myeloma. I have come out of remission for the multiple myeloma however.
At the time of my multiple myeloma diagnosis, which was severe, my CLL had also spiked considerably. I don't know if there is any relationship between the two, but it does spark my curiosity.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Is the relapse rate for myeloma really 100 percent?
Hi Mark11,
I wasn't holding Dr. Lonial's medical opinion higher than any others, or stating that 15-20% is a high percentage. I was just giving one example of an expert who thinks there is a certain percentage who are probably cured using current therapies, since that' what the original poster was asking about.
Mark
I wasn't holding Dr. Lonial's medical opinion higher than any others, or stating that 15-20% is a high percentage. I was just giving one example of an expert who thinks there is a certain percentage who are probably cured using current therapies, since that' what the original poster was asking about.
Mark
Re: Is the relapse rate for myeloma really 100 percent?
"Statistically speaking, is the true relapse rate of multiple myeloma 100%? Everywhere I read that it "always" comes back, but then I also read about long time survivors?"
Having a relapse and being a long-time survivor are not mutually exclusive.
I believe that multiple myeloma is heading toward being a chronic disease similar to the way diabetes is currently. Not curable, but controllable. The overall survival period of patients since the advent of the novel agents has been extended. There are more patients than ever before who have survived 10 years or more. Most of these are not in a true remission, since they have some low level disease. That level of disease, in many cases, is being held in check. In other cases, it has progressed at some point but has been driven back with new drug therapy. A relapse does not mean death, as most patients go through a series of relapses, and then remissions, over the course of the disease. As new drugs, like those being presented at ASH this week, are being developed and new and old combinations being explored, the overall survival period of patients continues to increase.
We as patients should all be hopeful and grateful that we are living during a period of intense research and development. A cure is always the goal, but having it become chronic is a huge step forward and we are at the cusp of it.
Having a relapse and being a long-time survivor are not mutually exclusive.
I believe that multiple myeloma is heading toward being a chronic disease similar to the way diabetes is currently. Not curable, but controllable. The overall survival period of patients since the advent of the novel agents has been extended. There are more patients than ever before who have survived 10 years or more. Most of these are not in a true remission, since they have some low level disease. That level of disease, in many cases, is being held in check. In other cases, it has progressed at some point but has been driven back with new drug therapy. A relapse does not mean death, as most patients go through a series of relapses, and then remissions, over the course of the disease. As new drugs, like those being presented at ASH this week, are being developed and new and old combinations being explored, the overall survival period of patients continues to increase.
We as patients should all be hopeful and grateful that we are living during a period of intense research and development. A cure is always the goal, but having it become chronic is a huge step forward and we are at the cusp of it.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Is the relapse rate for myeloma really 100 percent?
Hi Wayne K.,
"At the time of my multiple myeloma diagnosis, which was severe, my CLL had also spiked considerably. I don't know if there is any relationship between the two, but it does spark my curiosity."
That question is way above my technical knowledge, but all blood cancers arise from the same basic problem. Blood cancer patients all have immune systems that are not functioning properly. That is why replacing a blood cancer patients immune system with a healthy donor is considered a potential cure for blood cancer.
"Allogeneic hematopoietic cell transplantation (alloHCT) is a curative therapy for hematologic disorders including acute lymphoblastic and myeloid leukemia, chronic lymphocytic and myeloid leukemia, Hodgkin's and non-Hodgkin lymphoma, multiple myeloma, and myelodysplastic syndrome."
http://www.ncbi.nlm.nih.gov/pubmed/23811537
I did a quick search and an old abstract (1992) co-authored by Dr. Barlogie came up. I am sure there are more up to date papers with more recent knowledge of both diseases out there with a more detailed search.
"Multiple myeloma (multiple myeloma) and chronic lymphocytic leukemia (CLL) are closely related B-cell cancers. Parallel and divergent features of these diseases are reviewed. In multiple myeloma, expression of multiple hemopoietic lineage-associated antigens on the malignant cells and the substantial likelihood of progression to acute myelogenous leukemia suggest transformation of a pluripotent stem cell. In CLL, transformation more likely involves a committed B-cell progenitor. Another difference is that clonal evolution with associated cytogenetic progression is common in multiple myeloma but not CLL. Other data, including studies of proto-oncogenes and tumor suppressor genes, suggest that multiple myeloma results both from increased proliferation and accumulation of tumor cells, whereas tumor cell accumulation is the predominant feature of CLL. These differences may be reflected in the seemingly greater role of cytokine abnormalities in multiple myeloma progression. For example, osteoclast-activating properties of some cytokines account for bone involvement in multiple myeloma but not in CLL. multiple myeloma and CLL share common features such as stage-dependent anemia and immune deficiency. Both diseases respond to alkylating agents but vary markedly in their sensitivity to fludarabine (CLL greater than multiple myeloma) and glucocorticoids (multiple myeloma greater than CLL). Differences between these diseases in progression-free interval and survival may reflect different definitions of premalignant and malignant phases rather than biologic differences. Detailed comparisons between multiple myeloma and CLL may provide additional insights into these and related B-cell cancers."
http://www.amjmed.com/article/0002-9343(92)90176-C/abstract?cc=y
Good luck moving forward. Hope you find a drug more tolerable for you than Revlimid that gets your myeloma back into remission.
Mark
"At the time of my multiple myeloma diagnosis, which was severe, my CLL had also spiked considerably. I don't know if there is any relationship between the two, but it does spark my curiosity."
That question is way above my technical knowledge, but all blood cancers arise from the same basic problem. Blood cancer patients all have immune systems that are not functioning properly. That is why replacing a blood cancer patients immune system with a healthy donor is considered a potential cure for blood cancer.
"Allogeneic hematopoietic cell transplantation (alloHCT) is a curative therapy for hematologic disorders including acute lymphoblastic and myeloid leukemia, chronic lymphocytic and myeloid leukemia, Hodgkin's and non-Hodgkin lymphoma, multiple myeloma, and myelodysplastic syndrome."
http://www.ncbi.nlm.nih.gov/pubmed/23811537
I did a quick search and an old abstract (1992) co-authored by Dr. Barlogie came up. I am sure there are more up to date papers with more recent knowledge of both diseases out there with a more detailed search.
"Multiple myeloma (multiple myeloma) and chronic lymphocytic leukemia (CLL) are closely related B-cell cancers. Parallel and divergent features of these diseases are reviewed. In multiple myeloma, expression of multiple hemopoietic lineage-associated antigens on the malignant cells and the substantial likelihood of progression to acute myelogenous leukemia suggest transformation of a pluripotent stem cell. In CLL, transformation more likely involves a committed B-cell progenitor. Another difference is that clonal evolution with associated cytogenetic progression is common in multiple myeloma but not CLL. Other data, including studies of proto-oncogenes and tumor suppressor genes, suggest that multiple myeloma results both from increased proliferation and accumulation of tumor cells, whereas tumor cell accumulation is the predominant feature of CLL. These differences may be reflected in the seemingly greater role of cytokine abnormalities in multiple myeloma progression. For example, osteoclast-activating properties of some cytokines account for bone involvement in multiple myeloma but not in CLL. multiple myeloma and CLL share common features such as stage-dependent anemia and immune deficiency. Both diseases respond to alkylating agents but vary markedly in their sensitivity to fludarabine (CLL greater than multiple myeloma) and glucocorticoids (multiple myeloma greater than CLL). Differences between these diseases in progression-free interval and survival may reflect different definitions of premalignant and malignant phases rather than biologic differences. Detailed comparisons between multiple myeloma and CLL may provide additional insights into these and related B-cell cancers."
http://www.amjmed.com/article/0002-9343(92)90176-C/abstract?cc=y
Good luck moving forward. Hope you find a drug more tolerable for you than Revlimid that gets your myeloma back into remission.
Mark
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Mark11
Re: Is the relapse rate for myeloma really 100 percent?
Good discussion!
Mark K and Mark11,
Thanks for the additional links.
Rneb,
So the good news is just before you get hit by the bus at age 74, you can think, "Hey, at least now I know I was cured of multiple myeloma."
Mark K and Mark11,
Thanks for the additional links.
Rneb,
So the good news is just before you get hit by the bus at age 74, you can think, "Hey, at least now I know I was cured of multiple myeloma."
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Is the relapse rate for myeloma really 100 percent?
I think it's pretty clear that we can't yet consider myeloma to be a curable disease or even a completely manageable disease. It seems to me that you'd have to have some sort of general consensus among the experts before we could say we'd hit either of those goals, and we definitely don't have that.
On the other hand. as Mark K points out, there ARE some experts who are beginning to feel that we have reached those goals with at least some myeloma patients. From everything I understand, this represents a significant change from where things were ten years ago.
The progress is slow (and way too slow for those of us with the disease), but it's happening. I find that to be very encouraging.
On the other hand. as Mark K points out, there ARE some experts who are beginning to feel that we have reached those goals with at least some myeloma patients. From everything I understand, this represents a significant change from where things were ten years ago.
The progress is slow (and way too slow for those of us with the disease), but it's happening. I find that to be very encouraging.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Is the relapse rate for myeloma really 100 percent?
If you get the chance to attend a myeloma conference, I'd encourage you to do so. The hosts that they bring in from these research centers really lay out what is going on behind the scenes to save as many of us as they can.
We are not aware of the troubles these research centers have getting funding to test new treatments and then find an economical way to bring some of the treatments to the market. They can find a cure for the disease and then not get to market because of it being cost prohibitive. It boils down to fact that a human life does have a particular value as viewed from the insurance and drug companies.
The focus is on new drugs that are not in the same family as the existing drugs to provide more combinations of treatments. Patient tolerance for drugs varies, so the more combinations you have available the better the chance for you to find something tolerable by the patient.
I was surprised to learn that transplants are still recommended for relapsed patients if they had a good response to a transplant on initial treatment. Mayo considers a good response to be two years of remission post transplant. They also strongly recommend maintenance after transplant as all studies have shown extended remission times with patients who took maintenance.
With all this said, the disease is not considered manageable at this point as the death rate is still very high for this disease. Certain patients with a set of particular markers respond well and have long remissions but many patients are not that fortunate.
The one question that I could not get a good answer on was when a younger patient like myself comes down with the disease, is it really possible for the body to hold up to 10+ years of treatment? Knowing that the relapse rate is 100%, we'd be going through multiple treatment periods during a 10 year span and just how much of these chemicals can the body take?
Jerry.
We are not aware of the troubles these research centers have getting funding to test new treatments and then find an economical way to bring some of the treatments to the market. They can find a cure for the disease and then not get to market because of it being cost prohibitive. It boils down to fact that a human life does have a particular value as viewed from the insurance and drug companies.
The focus is on new drugs that are not in the same family as the existing drugs to provide more combinations of treatments. Patient tolerance for drugs varies, so the more combinations you have available the better the chance for you to find something tolerable by the patient.
I was surprised to learn that transplants are still recommended for relapsed patients if they had a good response to a transplant on initial treatment. Mayo considers a good response to be two years of remission post transplant. They also strongly recommend maintenance after transplant as all studies have shown extended remission times with patients who took maintenance.
With all this said, the disease is not considered manageable at this point as the death rate is still very high for this disease. Certain patients with a set of particular markers respond well and have long remissions but many patients are not that fortunate.
The one question that I could not get a good answer on was when a younger patient like myself comes down with the disease, is it really possible for the body to hold up to 10+ years of treatment? Knowing that the relapse rate is 100%, we'd be going through multiple treatment periods during a 10 year span and just how much of these chemicals can the body take?
Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Is the relapse rate for myeloma really 100 percent?
There are a number of cites, texts, Books, that all point to the fact that: - Quite a number of people have tumors, cancer, and Neoplasms in their bodies at Autopsy.
Completely unknown to them.
See: to your immediate right--"The Emperor of All Maladies : A Biography of Cancer."
Assuming that many of us do indeed have cancer within us, the fact that I can live a nearly full life, with quality, restoration of abilities, Health enough to work and enjoy life--is already quite close to a cure.
ie Diagnosed at 54-58 and 20 years gained by reasonable treatments, maintenance therapy, etc--so that I live to 74-78, is an acceptable trade off.
Why do you multiple myeloma people "Demand Complete Cure" ?? Especially when you are more than likely to develop another cancer, be hit by a bus, have a massive M.I., etc ??
There is cancer survival, relative survival...and there are other kinds of survival.
I know if I'm 75 and about to be hit by a bus--do I really give a rats-ass what my M Spike is, or if I'm "Cured of multiple myeloma" , only to simply die from another Cause ???
No, I'm worried about the damn Bus.
"Cure" sometimes Sounds like a Monty Python sketch gone awry..
Sometimes multiple myeloma folks just refuse to see any perspective, in all their disease.
Some folks suffering from 1950's Polio are still around--that disease sure isn't fair, either.
Good Luck
Completely unknown to them.
See: to your immediate right--"The Emperor of All Maladies : A Biography of Cancer."
Assuming that many of us do indeed have cancer within us, the fact that I can live a nearly full life, with quality, restoration of abilities, Health enough to work and enjoy life--is already quite close to a cure.
ie Diagnosed at 54-58 and 20 years gained by reasonable treatments, maintenance therapy, etc--so that I live to 74-78, is an acceptable trade off.
Why do you multiple myeloma people "Demand Complete Cure" ?? Especially when you are more than likely to develop another cancer, be hit by a bus, have a massive M.I., etc ??
There is cancer survival, relative survival...and there are other kinds of survival.
I know if I'm 75 and about to be hit by a bus--do I really give a rats-ass what my M Spike is, or if I'm "Cured of multiple myeloma" , only to simply die from another Cause ???
No, I'm worried about the damn Bus.
"Cure" sometimes Sounds like a Monty Python sketch gone awry..
Sometimes multiple myeloma folks just refuse to see any perspective, in all their disease.
Some folks suffering from 1950's Polio are still around--that disease sure isn't fair, either.
Good Luck
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Rneb
34 posts
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