Ian
You raise very important issues about the way these trials report and the influence of the drug companies to 'suppress' results that do not put their product in the most favorable light for long term use.
There is a real need for serious critical reviews which bring the scientific and clinical information together to highlight the flaws in research design which suggest favorable outcomes with a treatment. Too many of the studies are from various specialists in the field all having some degree of bias in my view so we need independent pulling together.
Myeloma patients have become something of a 'living laboratory' for drug companies and clinicians in recent times. It gives us hope for treatment options as we rely on this from the drug companies and they rely on us for their profits.
The size of the patient population is small compared to the common cancers so the need for studies which have identical designs, globally, is a necessity to make meaningful / valid statements e.g. about use of a drug for long term maintenance. These drugs may control the disease, but they can give rise to serious side affects which can kill too and since most of us with advanced disease / in relapse do not live in the clinic / hospital, monitoring may not be rapid enough to provide an antidote, even when this is possible.
We as patients should not have to deal with conflicting information, with some clinicians choosing short term maintenance regimes and others choosing long term ones. We also need to know just how many actually have need for increased supportive care / changes in regime due to side affects of the drugs.
How can we make informed decisions?
Forums
Re: Lenalidomide for maintenance therapy in India?
Hi Edna,
While I agree with a lot of what you say, I think we disagree on some things at a fundamental level.
I think it is absolutely great that so much research is going on related to finding better treatments for multiple myeloma, and to building a better understanding of the disease's biology. I also think it's natural in such a dynamic research environment for there to be a lot of uncertainty – for patients and for physicians.
In other words, I see the uncertainty you so dislike as a natural reflection of a dynamic, rapidly expanding knowledge base related to multiple myeloma. If the research field were not so dynamic, you would probably get more of that certainty you seem to want. But, oh, what you'd give up in the process. New treatments. New insights into how the disease works and how best to treat it. In fact, just about everything that has allowed patients today to live years longer, on average, than patients just 10 years ago.
Of course, you also could have less uncertainty if some sort of Grand Council met every year and ruled "This is the way multiple myeloma should be treated, and you shall be banished from the Myeloma Kingdom if you do not treat multiple myeloma that way".
But I'd also hate to see that, because it would eliminate the competition in ideas that is now going on between different treatment centres, research groups, and even myeloma specialists, who are working (and competing with one another) to find new and better ways to extend the survival of myeloma patients. I see this as no different from the competition that goes on in just about every other part of our lives.
I realize that such competition has its downsides, but it also invariably leads to more rapid advances in technology and innovation than any centralised approach could ever hope to deliver. When it comes to multiple myeloma, I definitely want the most rapid advancement in treatment options and insights possible.
While I agree with a lot of what you say, I think we disagree on some things at a fundamental level.
I think it is absolutely great that so much research is going on related to finding better treatments for multiple myeloma, and to building a better understanding of the disease's biology. I also think it's natural in such a dynamic research environment for there to be a lot of uncertainty – for patients and for physicians.
In other words, I see the uncertainty you so dislike as a natural reflection of a dynamic, rapidly expanding knowledge base related to multiple myeloma. If the research field were not so dynamic, you would probably get more of that certainty you seem to want. But, oh, what you'd give up in the process. New treatments. New insights into how the disease works and how best to treat it. In fact, just about everything that has allowed patients today to live years longer, on average, than patients just 10 years ago.
Of course, you also could have less uncertainty if some sort of Grand Council met every year and ruled "This is the way multiple myeloma should be treated, and you shall be banished from the Myeloma Kingdom if you do not treat multiple myeloma that way".
But I'd also hate to see that, because it would eliminate the competition in ideas that is now going on between different treatment centres, research groups, and even myeloma specialists, who are working (and competing with one another) to find new and better ways to extend the survival of myeloma patients. I see this as no different from the competition that goes on in just about every other part of our lives.
I realize that such competition has its downsides, but it also invariably leads to more rapid advances in technology and innovation than any centralised approach could ever hope to deliver. When it comes to multiple myeloma, I definitely want the most rapid advancement in treatment options and insights possible.
Re: Lenalidomide for maintenance therapy in India?
Hi Ian
Have you actually worked in clinical scientific research at a competitive level? I have and my thoughts and experiences now as a patient are tempered by this. I do agree basic research into the biology of a disease is of great value, but many lines of approach now hailed as 'new' are less new than people might realise. How drugs come into use is often complex..
I accept being a walking laboratory for multiple myeloma because that is how things are in treatment of this disease and I want to to live a little longer- if possible. As you say there have been advances in life expectancy increase over recent years, But the quality and offering of timely supportive care interventions,as needed, not just increased drug treatment options, has been part of the picture too, I also recognise multiple myeloma is a complex cancer and patient studies limited by the low numbers developing it.
But where I feel much has hampered progress in treatment and the survival of some patients is the fairly long held knowledge that the same treatments given to individual patients do not elicit the same survival outcomes, co-morbidities aside. Much research is undertaken in 'silos' where competition occurs leading to a lot of disparity and difficulty in getting consensus. If people speak to each other rather than compete they learn much more.
That is where the effort in my view has been slower than might have been the case if there was not 'so much competition' to get patients and drug companies to recoup costs. The greatest medical advance for man was the development of antibiotics. Now we have a situation in the over use of these life savers which threatens us all. Where have the medical community and pharmaceutical industry been in this situation to take up the cudgel to a threat so great? The way that scientific 'progress' occurs may hamper the need to respond rapidly.
Have you actually worked in clinical scientific research at a competitive level? I have and my thoughts and experiences now as a patient are tempered by this. I do agree basic research into the biology of a disease is of great value, but many lines of approach now hailed as 'new' are less new than people might realise. How drugs come into use is often complex..
I accept being a walking laboratory for multiple myeloma because that is how things are in treatment of this disease and I want to to live a little longer- if possible. As you say there have been advances in life expectancy increase over recent years, But the quality and offering of timely supportive care interventions,as needed, not just increased drug treatment options, has been part of the picture too, I also recognise multiple myeloma is a complex cancer and patient studies limited by the low numbers developing it.
But where I feel much has hampered progress in treatment and the survival of some patients is the fairly long held knowledge that the same treatments given to individual patients do not elicit the same survival outcomes, co-morbidities aside. Much research is undertaken in 'silos' where competition occurs leading to a lot of disparity and difficulty in getting consensus. If people speak to each other rather than compete they learn much more.
That is where the effort in my view has been slower than might have been the case if there was not 'so much competition' to get patients and drug companies to recoup costs. The greatest medical advance for man was the development of antibiotics. Now we have a situation in the over use of these life savers which threatens us all. Where have the medical community and pharmaceutical industry been in this situation to take up the cudgel to a threat so great? The way that scientific 'progress' occurs may hamper the need to respond rapidly.
Re: Lenalidomide for maintenance therapy in India?
As one of the "walking laboratory" for Revlimid and multiple myeloma, I want to let the Revlimid users know that I was diagnosed this week with macular degeneration is both eyes! I am 58 and there is no family tendency toward macular degeneration. When I looked at an online pamphlet on Revlimid, I see that macular degeneration is a side effect.
My eye doctor suggested I take Viteyes supplement by VH (Vitamin Health)
I am to take 2 tablets - one with breakfast, one with dinner. 2 tablets has:
Vitamin C 500 mg
Vitamin E 400 IU
Zinc 25 mg
Copper 2 mg
Lutein 10 mg
Zeaxanthin 2 mg
Has anyone else had this side effect? I was a bit down about it and talked to a wonderful friend of mine who has ovarian cancer. She said her eyesight had been getting worse and worse – until she had chemo – then her eyesight got better! We had a good laugh about that.
Cathy
My eye doctor suggested I take Viteyes supplement by VH (Vitamin Health)
I am to take 2 tablets - one with breakfast, one with dinner. 2 tablets has:
Vitamin C 500 mg
Vitamin E 400 IU
Zinc 25 mg
Copper 2 mg
Lutein 10 mg
Zeaxanthin 2 mg
Has anyone else had this side effect? I was a bit down about it and talked to a wonderful friend of mine who has ovarian cancer. She said her eyesight had been getting worse and worse – until she had chemo – then her eyesight got better! We had a good laugh about that.
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Lenalidomide for maintenance therapy in India?
Hi Cathy, Thanks for sharing about the macular degeneration dx. Are you seeing an ophthalmologist for this? I would be worried about this getting to be severe, since it is very disabling for one's vision. I hope that your oncologist would also be considering that Revlimid might not be the right drug for you, if it is giving you eye damage.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Lenalidomide for maintenance therapy in India?
Hi Cathy,
I'm so sorry to hear about your macular degeneration diagnosis. As Nancy said, I definitely would recommend seeing an ophthalmologist about this and having the ophthalmologist and your oncologist coordinate your myeloma treatment in light of the macular degeneration.
For about 8 years, I've been monitored by my ophthalmologist for macular degeneration because I showed some early signs of it. However, I've been fortunate and it has not progressed further in the three or so years that I have been taking Revlimid.
Best wishes to you regarding this new development. Please keep us posted.
Mike
I'm so sorry to hear about your macular degeneration diagnosis. As Nancy said, I definitely would recommend seeing an ophthalmologist about this and having the ophthalmologist and your oncologist coordinate your myeloma treatment in light of the macular degeneration.
For about 8 years, I've been monitored by my ophthalmologist for macular degeneration because I showed some early signs of it. However, I've been fortunate and it has not progressed further in the three or so years that I have been taking Revlimid.
Best wishes to you regarding this new development. Please keep us posted.
Mike
-
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: Lenalidomide for maintenance therapy in India?
Thank you, Nancy and Mike.
I suppose you are right
. I got the diagnosis from my optometrist when I was getting a new pair of prescription glasses. He has a machine that takes a picture of the retina, and something concerned him about that picture, so he had his nurse use a machine that said "OCT" on it and it produced something like an MRI of my retina.
He showed me the computerized image and my retina had just one little blip on one eye, but 2 on the other. He said that I should take these vitamins and wear dark glasses when outside and make sure I come in annually to have it checked. So, it is just barely started, but I suspect you are both right that I should see an ophthalmologist and I know a good one in town. It is encouraging that Mike's eyes have not gotten worse in last 8 years.
I know you can relate to how I hate to have another doctor in the mix - sigh.
That is a benefit of this forum, though. Others can make wise suggestions.
Thank you for your good advice.
Cathy
I suppose you are right
. I got the diagnosis from my optometrist when I was getting a new pair of prescription glasses. He has a machine that takes a picture of the retina, and something concerned him about that picture, so he had his nurse use a machine that said "OCT" on it and it produced something like an MRI of my retina. He showed me the computerized image and my retina had just one little blip on one eye, but 2 on the other. He said that I should take these vitamins and wear dark glasses when outside and make sure I come in annually to have it checked. So, it is just barely started, but I suspect you are both right that I should see an ophthalmologist and I know a good one in town. It is encouraging that Mike's eyes have not gotten worse in last 8 years.
I know you can relate to how I hate to have another doctor in the mix - sigh.
That is a benefit of this forum, though. Others can make wise suggestions.
Thank you for your good advice.
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Lenalidomide for maintenance therapy in India?
I agree with Ian's entire post and especially the last paragraph:
Edna -
I have read the number of patients involved in clinical trials for myeloma is around 5%. How are doctors supposed to have the type of large trials you discuss if patients are not willing to go into the trials? The studies I based my therapy choices on were mostly (very) small, but they seem to have been accurate in terms of outcome/quality of life. Just by chance, have you been involved in a clinical trial? I never have, that is why I do not expect everyone else to get into them since I was not ever in one.
Of the patients that post regularly on this forum, MikeB is about the only one that has a right to complain about not having large randomized trials to answer the questions we have since he is one of the few that actually got into a randomized trial as part of his upfront therapy.
"Not surprisingly, you don't hear as much about the IFM trial results these days because, I suspect, the trial investigators aren't getting as much financial support to write updates about it compared, for example, to the investigators leading the one (flawed) trial that is showing an overall survival benefit."
Edna -
I have read the number of patients involved in clinical trials for myeloma is around 5%. How are doctors supposed to have the type of large trials you discuss if patients are not willing to go into the trials? The studies I based my therapy choices on were mostly (very) small, but they seem to have been accurate in terms of outcome/quality of life. Just by chance, have you been involved in a clinical trial? I never have, that is why I do not expect everyone else to get into them since I was not ever in one.
Of the patients that post regularly on this forum, MikeB is about the only one that has a right to complain about not having large randomized trials to answer the questions we have since he is one of the few that actually got into a randomized trial as part of his upfront therapy.
-
Mark11
Re: Lenalidomide for maintenance therapy in India?
Mark 11
It is clear you have come to treatment for yourself based on the papers you have read. That is not a problem, as I did exactly the same. But I get the impression you see myeloma patients as more similar than dissimilar and see certain aspects of the affects of treatment with drugs to be negative.
Before myeloma I never took medicines readily and held off taking suggested ones until I had done my own research into risks and benefits to ME. The same may not be applicable to another patient. I was brought up to be anti conventional drugs because they cause harm and do not cure.
My choice of treatments is more limited and transplants ruled out. So yes I do look at trials and asked if there were any suitable, I was told not. But I object to trials only for newly diagnosed, the easiest to get positive results with usually. We need more trials where people who have relapsed several times can be tried with newer therapies.
How we interpret the same studies can be biased towards seeking those that confirm our own thinking in terms of treatment for ourselves.. That is choice, but it does not mean we will be right. We may be lucky, another person may not in deciding on the same treatment that we chose. So as a once scientist I try to look at the whole picture and complexity of myeloma and the fact treatments are less based on exact science, but often opposing views leading to guesswork due to the philosophies of treating doctors who sometimes themselves base their views on the studies that fit their own treating methods.
That is why I do not inform about my treatment. I cannot predict outcome for myself let alone anyone else. You are looking back with hindsight which suggests your treatment was right for you. Hindsight often informs what none of could predict at the outset.
It is clear you have come to treatment for yourself based on the papers you have read. That is not a problem, as I did exactly the same. But I get the impression you see myeloma patients as more similar than dissimilar and see certain aspects of the affects of treatment with drugs to be negative.
Before myeloma I never took medicines readily and held off taking suggested ones until I had done my own research into risks and benefits to ME. The same may not be applicable to another patient. I was brought up to be anti conventional drugs because they cause harm and do not cure.
My choice of treatments is more limited and transplants ruled out. So yes I do look at trials and asked if there were any suitable, I was told not. But I object to trials only for newly diagnosed, the easiest to get positive results with usually. We need more trials where people who have relapsed several times can be tried with newer therapies.
How we interpret the same studies can be biased towards seeking those that confirm our own thinking in terms of treatment for ourselves.. That is choice, but it does not mean we will be right. We may be lucky, another person may not in deciding on the same treatment that we chose. So as a once scientist I try to look at the whole picture and complexity of myeloma and the fact treatments are less based on exact science, but often opposing views leading to guesswork due to the philosophies of treating doctors who sometimes themselves base their views on the studies that fit their own treating methods.
That is why I do not inform about my treatment. I cannot predict outcome for myself let alone anyone else. You are looking back with hindsight which suggests your treatment was right for you. Hindsight often informs what none of could predict at the outset.
Re: Lenalidomide for maintenance therapy in India?
Well, since my name was invoked by Mark11 ...
I think Ian, Edna, and Mark11 have all made good points in this discussion (which by now is pretty far removed from Shukla's original question about Revlimid in India).
In my career, I worked as a researcher, an engineer, and a manager (in a non-medical field). All of these roles color how I view what is going on in the myeloma world.
The researcher in me appreciates the scientific work that is going on to move the knowledge base forward, as Ian pointed out. It also helps me see some of the flaws in the design of some of the clinical trials that are conducted. So I know we need to weigh some trials more heavily than others as we make decisions. I think this is a point both Ian and Edna made, or close to, at least.
The engineer in me is accustomed to making design decisions based on data. But all too often those data are incomplete or not exactly what you need for the situation you're dealing with. So you have to make design decisions based on the best data available, knowing that it is not perfect. That's a fact of life when you're an engineer, even though you don't like it. This goes hand in hand with Mark's point about the small percentage of patients participating in clinical trials. Edna's point about the large differences between patients resonates with the engineer in me as well.
I see our doctors as engineers in this respect too. They have to make decisions about treatment, or suggest treatments, based on limited and uncertain knowledge. Strangely enough, multiple myeloma may be one of the forms of cancer where doctors have the most data points to use when making a decision about a patient, with M-spikes, and immunoglobulin numbers, and free light chain numbers, and FISH results, and ... to consider. But even with all these numbers there are so many individual differences and so many as yet unknown important factors that it's essentially impossible to predict any individual patient's long-term myeloma prognosis with much specificity or accuracy. This, I think, was another of Edna's points of discomfort. We all share this, I'm sure.
Finally, the manager in me understands how (unfortunately!) funding dictates what results get published, as Ian pointed out. And, at a larger level, what research gets conducted in the first place. And it also makes me aware of the competition that both Edna and Ian discussed. There is good and bad that comes from that competition. Not only competition between pharma companies, but also between research centers (though there is also a fair amount of cooperation in multi-center trials). And even competition between the various myeloma-related non-profit organizations.
It's all a very complicated situation when you want to make the best decision for yourself. So we (or at least I) muddle forward the best that we/I can. At least we have some data to use. I'm happy about that.
Now I've really moved us way away from the original question!
Mike
I think Ian, Edna, and Mark11 have all made good points in this discussion (which by now is pretty far removed from Shukla's original question about Revlimid in India).
In my career, I worked as a researcher, an engineer, and a manager (in a non-medical field). All of these roles color how I view what is going on in the myeloma world.
The researcher in me appreciates the scientific work that is going on to move the knowledge base forward, as Ian pointed out. It also helps me see some of the flaws in the design of some of the clinical trials that are conducted. So I know we need to weigh some trials more heavily than others as we make decisions. I think this is a point both Ian and Edna made, or close to, at least.
The engineer in me is accustomed to making design decisions based on data. But all too often those data are incomplete or not exactly what you need for the situation you're dealing with. So you have to make design decisions based on the best data available, knowing that it is not perfect. That's a fact of life when you're an engineer, even though you don't like it. This goes hand in hand with Mark's point about the small percentage of patients participating in clinical trials. Edna's point about the large differences between patients resonates with the engineer in me as well.
I see our doctors as engineers in this respect too. They have to make decisions about treatment, or suggest treatments, based on limited and uncertain knowledge. Strangely enough, multiple myeloma may be one of the forms of cancer where doctors have the most data points to use when making a decision about a patient, with M-spikes, and immunoglobulin numbers, and free light chain numbers, and FISH results, and ... to consider. But even with all these numbers there are so many individual differences and so many as yet unknown important factors that it's essentially impossible to predict any individual patient's long-term myeloma prognosis with much specificity or accuracy. This, I think, was another of Edna's points of discomfort. We all share this, I'm sure.
Finally, the manager in me understands how (unfortunately!) funding dictates what results get published, as Ian pointed out. And, at a larger level, what research gets conducted in the first place. And it also makes me aware of the competition that both Edna and Ian discussed. There is good and bad that comes from that competition. Not only competition between pharma companies, but also between research centers (though there is also a fair amount of cooperation in multi-center trials). And even competition between the various myeloma-related non-profit organizations.
It's all a very complicated situation when you want to make the best decision for yourself. So we (or at least I) muddle forward the best that we/I can. At least we have some data to use. I'm happy about that.
Now I've really moved us way away from the original question!
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
20 posts
• Page 2 of 2 • 1, 2
Return to Treatments & Side Effects