Hi Nancy S. and K_Shash,
I think those factors may be more important than you think. Higher educational levels lead to having more income to spend for your therapy and the ability to read journal articles, etc to make you a more informed patient. There are many news articles about US patients being unable to afford cancer meds. Every patient does not have the ability to get treated at a center of excellence due to economic reasons.
Take me for example. Do you both think everybody is in a financial position to take a year off from work to do an allogeneic transplant? If you read some of my older posts (2011) I was writing about things like MRD testing and t cell depleted allos before most/anyone here even knew what they were. I could do that because I have the educational background to read and understand journal articles and I am treated by a doctor that used them back in 2010. Those things were extremely beneficial in helping me get into a position to be a long term survivor with an excellent QOL as a high risk patient.
Mark
Forums
Re: Long-term multiple myeloma survivors - case studies
Unfortunately, Mark is correct that issues such as economic and educational status of patients can impact survivability for diseases like myeloma. I hope we can someday get to the point at which such factors are not so important, but we're a very long way away from that.
Of course, race is important from the genetic standpoint as well. It can be a positive or a negative factor in one's ability to survive diseases like myeloma over the long term.
Of course, race is important from the genetic standpoint as well. It can be a positive or a negative factor in one's ability to survive diseases like myeloma over the long term.
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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: Long-term multiple myeloma survivors - case studies
Just to add I agree with Mark and Mike.
I myself was not happy with my first myeloma consultants' approaches. I had read enough and knew enough about my personal situation as a well educated professional to be convinced the plan was not right for me, even though given to most everyone as a 'gold standard'. in myeloma..
My second opinion myeloma specialist, much more well known, listened to me and took on board everything I said. I got the treatment I sought, which, considering the long delay in being diagnosed elsewhere and the damage to my body, worked to give me a VGPR within less than 2 cycles, although I did get seriously ill soon after..
My current specialists have since taken the same view that I initially held regarding my ongoing treatment and have had straight discussions with me allowing me to raise key issues from research findings, that I apply to my case.
Without education and ability one cannot seek out the possible best personal approaches with respect to a disease which is very difficult to treat and has no cure.
The limitations in general are which treatments are available, where and under what conditions. Just because a treatment comes up trumps it cannot always be accessed by everyone who might benefit. Whether it is available depends on cost whether the insurance pays, the government pays,the insitution offers a trial, or you pay for yourself. The latter is only possible if your education has allowed you a very good income.
Health inequalities are rife for many reasons, not always genetic or ethinic based.
I myself was not happy with my first myeloma consultants' approaches. I had read enough and knew enough about my personal situation as a well educated professional to be convinced the plan was not right for me, even though given to most everyone as a 'gold standard'. in myeloma..
My second opinion myeloma specialist, much more well known, listened to me and took on board everything I said. I got the treatment I sought, which, considering the long delay in being diagnosed elsewhere and the damage to my body, worked to give me a VGPR within less than 2 cycles, although I did get seriously ill soon after..
My current specialists have since taken the same view that I initially held regarding my ongoing treatment and have had straight discussions with me allowing me to raise key issues from research findings, that I apply to my case.
Without education and ability one cannot seek out the possible best personal approaches with respect to a disease which is very difficult to treat and has no cure.
The limitations in general are which treatments are available, where and under what conditions. Just because a treatment comes up trumps it cannot always be accessed by everyone who might benefit. Whether it is available depends on cost whether the insurance pays, the government pays,the insitution offers a trial, or you pay for yourself. The latter is only possible if your education has allowed you a very good income.
Health inequalities are rife for many reasons, not always genetic or ethinic based.
Re: Long-term multiple myeloma survivors - case studies
Edna,
I couldn't agree more and I'm glad you were able to pursue the treatments you needed.
I am only MGUS. I do not know how those who are diagnosed with multiple myeloma do it! To receive such a devastating diagnosis and immediately turn around and know how to get the best treatment for your individual needs is mind blowing.
It has taken me a year of reading and researching online to even begin to understand the etiology of this disease and how it wreaks havoc on one's body. This is not easy material for the layperson to comprehend, much less navigate through the treatment options while soaking in the no-cure-yet prognosis.
I have been in contact with a number of other people with MGUS and SMM and I find it appalling how many patients see generalists who tell them they can follow up in a few years because it's very common in the older population. Or folks who are told they don't need to have thorough testing as a baseline. Many people do not realize how unique multiple myeloma is and how specialized a physician must be even to follow the precursor states. There are constantly newly emerging studies. And thorough testing, even in an apparent low risk case, is quite vital. This is a disease of labs, not symptoms.
So the key with this disease is knowledge and access to specialized healthcare. I think there are some great people out there who are trying to transmit accurate and up-to-date information so we can all be better patients with better care.
I couldn't agree more and I'm glad you were able to pursue the treatments you needed.
I am only MGUS. I do not know how those who are diagnosed with multiple myeloma do it! To receive such a devastating diagnosis and immediately turn around and know how to get the best treatment for your individual needs is mind blowing.
It has taken me a year of reading and researching online to even begin to understand the etiology of this disease and how it wreaks havoc on one's body. This is not easy material for the layperson to comprehend, much less navigate through the treatment options while soaking in the no-cure-yet prognosis.
I have been in contact with a number of other people with MGUS and SMM and I find it appalling how many patients see generalists who tell them they can follow up in a few years because it's very common in the older population. Or folks who are told they don't need to have thorough testing as a baseline. Many people do not realize how unique multiple myeloma is and how specialized a physician must be even to follow the precursor states. There are constantly newly emerging studies. And thorough testing, even in an apparent low risk case, is quite vital. This is a disease of labs, not symptoms.
So the key with this disease is knowledge and access to specialized healthcare. I think there are some great people out there who are trying to transmit accurate and up-to-date information so we can all be better patients with better care.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Long-term multiple myeloma survivors - case studies
Hi I'm not going to get into anyone else statements except to say that I am a non black , moderately educated (high school) some tech training (A/P lic. aircraft mech) and was diagnosed with multiple myeloma in 2004 had ( 1) One treatment for 10 months with Thalidomide & Dex - no I repeat NO stem cell or other treatment since that time - I go in every 6 mo. for blood tests and so far the Myeloma is stable , I think all the factors they quote are very important as for instance your level of schooling may indicate what trades you were involved with and many of the blue collar trades involve contaminates with chemicals that white collar workers never know about much less use. It quite obvious that Genetic back ground ( race) plays a role in this because unfortunately all men are not created equal as far as disease resistance goes - take cycle cell disease there are only certain genetic groups effected by this. I'll end this by saying best of luck to all who suffer from this nasty disease . N.G. 
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Long-term multiple myeloma survivors - case studies
'Patients with multiple myeloma who are considered long survivors are usually young patients, without high-risk cytogenetic features and international staging score (ISS) 1, low tumor burden (absence of severe anemia, hypercalcaemia, renal failure, or multiple bone lesions), absence of Bence-Jones proteinuria, low-plasma cell percentage in bone marrow, mature and intermediate myeloma. Also, a positive response to first-line treatment and to subsequent treatments were related to long-term survival [19-21]. Interestingly, it seems that long-term survival in multiple myeloma is associated with a distinct immunological profile, which includes proliferative cytotoxic T-cell clones and a favorable Treg/Th17 balance [22].'
The above quote is from the paper Edna cited at the start of this thread. This is more of a scientific approach to long term survivorship, as opposed to socioeconomic factors. Of course, I know that socioeconomic factors must also be important in how people do in a health care system and in life in general!
I can only surmise that the descriptions of patient groups comes from a questionnaire issued by participating cancer centres. I still have issues with how groups are described according to their heritage, since all people are more similar than different in our genetics. Also, the gender of patients does not seem to be mentioned! So I can see that 'survivorship' could mean different things to different people!
The above quote is from the paper Edna cited at the start of this thread. This is more of a scientific approach to long term survivorship, as opposed to socioeconomic factors. Of course, I know that socioeconomic factors must also be important in how people do in a health care system and in life in general!
I can only surmise that the descriptions of patient groups comes from a questionnaire issued by participating cancer centres. I still have issues with how groups are described according to their heritage, since all people are more similar than different in our genetics. Also, the gender of patients does not seem to be mentioned! So I can see that 'survivorship' could mean different things to different people!
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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: Long-term multiple myeloma survivors - case studies
Interesting discussion here, but wait a second!
From Mark11's Monday post, where he was quoting from the ASH 2013 abstract that the Beacon Staff mentioned:
So lower education level predicted longer survival (!), which is the opposite of what I would have predicted, and the opposite of what several commenters here in this thread have been saying. I think the folks here who pointed out why higher education level should be correlated with longer survival have made good points, the kinds of things I'd been thinking myself. But that's not what the study found, if you take that quote at face value.
However, the abstract also says (earlier): "...the long-term survivor subgroup had a significantly higher proportion of patients with high educational level." That would seem to directly contradict the above quote. So I'm confused. Maybe "lower education level" was a typo in the abstract, and they really meant "higher."
Mike
From Mark11's Monday post, where he was quoting from the ASH 2013 abstract that the Beacon Staff mentioned:
Multivariable analyses showed that younger age, non-Black race, lower education level, non-Medicare/Medicaid primary payor, treatment at academic centers, and receipt of ASCT as part of initial treatment were significant independent predictors of survival > 10 years."
So lower education level predicted longer survival (!), which is the opposite of what I would have predicted, and the opposite of what several commenters here in this thread have been saying. I think the folks here who pointed out why higher education level should be correlated with longer survival have made good points, the kinds of things I'd been thinking myself. But that's not what the study found, if you take that quote at face value.
However, the abstract also says (earlier): "...the long-term survivor subgroup had a significantly higher proportion of patients with high educational level." That would seem to directly contradict the above quote. So I'm confused. Maybe "lower education level" was a typo in the abstract, and they really meant "higher."
Mike
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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: Long-term multiple myeloma survivors - case studies
Hi Mikeb,
I think the way the conclusion is written is being misread. It means the variables listed either negatively, or positively, have been assessed to be predictors of survival > 10 years. ASCT predicts positively, low educational level negatively etc. The way the paragraph has been written is not clear on this.
Hope this clarifies.
Edna
I think the way the conclusion is written is being misread. It means the variables listed either negatively, or positively, have been assessed to be predictors of survival > 10 years. ASCT predicts positively, low educational level negatively etc. The way the paragraph has been written is not clear on this.
Hope this clarifies.
Edna
Re: Long-term multiple myeloma survivors - case studies
Mikeb and Edna,
I would be interested in hearing your thoughts about what the reference to non-Medicare / Medicaid primary payor is supposed to signify (although I have the impression that Edna may not be from the U.S.A. and therefore may not be familiar with our system).
I would be interested in hearing your thoughts about what the reference to non-Medicare / Medicaid primary payor is supposed to signify (although I have the impression that Edna may not be from the U.S.A. and therefore may not be familiar with our system).
Re: Long-term multiple myeloma survivors - case studies
mrozdav
This Beacon forum thread indicates the issue:
"Medicare coverage of Revlimid," (started Jan 10, 2012)
Those in the USA who cannot be adequately covered by insurance for their whole journey with myeloma would not likely be long term survivors - makes logical sense.
Not just the costs of drugs such as Revlimid are involved, but also the supporting chemo drugs and other medical costs have to come from somewhere and the Medicare system it seems may not cover all these elements – as this thread suggests – so charities too are approached. What patients will get on these insurance programmes no doubt depends on the level of cover paid for, as for most insurance schemes. Access to myeloma specialists may involve travel which is another cost.
It is true I do not live in the USA, but might consider seeking opinions / treatment there if necessary there. This is only possible with either relevant insurance or personal resources.
This Beacon forum thread indicates the issue:
"Medicare coverage of Revlimid," (started Jan 10, 2012)
Those in the USA who cannot be adequately covered by insurance for their whole journey with myeloma would not likely be long term survivors - makes logical sense.
Not just the costs of drugs such as Revlimid are involved, but also the supporting chemo drugs and other medical costs have to come from somewhere and the Medicare system it seems may not cover all these elements – as this thread suggests – so charities too are approached. What patients will get on these insurance programmes no doubt depends on the level of cover paid for, as for most insurance schemes. Access to myeloma specialists may involve travel which is another cost.
It is true I do not live in the USA, but might consider seeking opinions / treatment there if necessary there. This is only possible with either relevant insurance or personal resources.
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