Dee,
If I recall correctly, you also have been treated with prednisone. At least you mention it in some of your earliest postings here.
If we're going to draw conclusions from anecdotal evidence, let's all remember the case of Dave, who joined the forum in December of 2012. He raved here about how well his unconventional therapy was doing for him -- how his friends were telling him how great he looked, and how awesome he felt after his hyperthermia treatments and the juicing that he had been doing.
However, last May he wrote:
"From diagnosis I was adamant that natural supplements and treatments would give the body the strength to fight the myeloma, boost the immune system and not harm the body in the process ... I tried all sorts of treatments, too numerous to mention, until I became gravely ill when about 6 weeks ago ... I was stage 3 and in kidney failure, acute myeloid leukemia, dangerously high calcium, bone marrow failure, and tumor lysis syndrome ... "
"Doctor gave me 2 weeks survival without chemotherapy ... I had no choice but to go straight to DT-PACE, intravenously, for 4 days straight. "
That was his last posting here in the forum.
https://myelomabeacon.org/forum/unconventional-methods-treating-multiple-myeloma-t1574-30.html#p10080
Forums
Re: Why not stop chemo and seek alternative treatment?
Hi Dee, I am sorry if I upset you and it's good to know that you got blood work done from your PCP (that is what they call family physicians in the US i think). Mostly induction chemo is done in conjunction with dexamethasone, I think. I can understand just how worrying any of this to any of us actually, and I hope you find the right balance with treatments too. Probably if the program you are on right now doesn't work out, you would go back to the conventional chemotherapies?
Ricardo mentioned a fellow who posted here about therapies using heat treatments, and as mentioned, he posted back later saying he was very ill. I hope he is OK, but I haven't seen any postings by him either. The whole myeloma experience is scary, that's for sure! I hope that you and your family stay really well. Don't hesitate to post here and ask opinions of any of the very well informed patients and the doctors too!
Nancy
Ricardo mentioned a fellow who posted here about therapies using heat treatments, and as mentioned, he posted back later saying he was very ill. I hope he is OK, but I haven't seen any postings by him either. The whole myeloma experience is scary, that's for sure! I hope that you and your family stay really well. Don't hesitate to post here and ask opinions of any of the very well informed patients and the doctors too!
Nancy
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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: Why not stop chemo and seek alternative treatment?
I took 10 mg of prednisone a couple times a week for two months with the Rev. I stopped in June. Do you think that is what keeping me stable up to now? That is must be it! I told you, I did not go in remission, my IgA was around 6,000 when I canceled my appointments with my last oncologist in September, or Aug? I can't remember. Well, it didn't work out with Dave very well. What he did didn't work did it? Sorry for that. I guess he wasn't taking pancreatic enzymes then. 
Heat treatments? Never heard of anyone curing cancer with heat treatments.
Why would I take chemo? It doesn't cure. Seems a waste of quality of life.
Heat treatments? Never heard of anyone curing cancer with heat treatments.
Why would I take chemo? It doesn't cure. Seems a waste of quality of life.
Re: Why not stop chemo and seek alternative treatment?
There are people on drugs that get worse and you don't read their posts either. As my oncologist yelled over and over, there is no cure. Is'nt that everone's fear, you don 't read some one's post again? When will be it our last post? You are in the same boat. None of you have a guarantee of outliving even me.
Re: Why not stop chemo and seek alternative treatment?
dee777,
Not quite understanding your attitude. I get that you are feeling attacked but, speaking for myself, your posts feel confrontational and smug. You seem to hate everything about conventional treatments for multiple myeloma which is what most of us here utilize yet tout an unconventional treatment as the magic bullet to end all multiple myeloma.
If quality of life is what is most important to you, then that's great ... for you. My quality of life is not some horrible dance of the devil and it is NOT a waste simply because I choose to take chemo. I would do it all again the same way to save my life and give me more years with my family. I have some residual side effects from treatment but the side effects of no treatment would be death. Seems like a good trade off for me.
Your choice of treatment is your choice. No need to ridicule the treatment that the rest of us have chosen to take advantage of.
Not quite understanding your attitude. I get that you are feeling attacked but, speaking for myself, your posts feel confrontational and smug. You seem to hate everything about conventional treatments for multiple myeloma which is what most of us here utilize yet tout an unconventional treatment as the magic bullet to end all multiple myeloma.
If quality of life is what is most important to you, then that's great ... for you. My quality of life is not some horrible dance of the devil and it is NOT a waste simply because I choose to take chemo. I would do it all again the same way to save my life and give me more years with my family. I have some residual side effects from treatment but the side effects of no treatment would be death. Seems like a good trade off for me.
Your choice of treatment is your choice. No need to ridicule the treatment that the rest of us have chosen to take advantage of.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Why not stop chemo and seek alternative treatment?
I'm really sorry about your mum Geramia.
This is only meant as info in general, not directed at you mum.
This man wrote a very interesting book about his journey of making an informed decision not to have chemo for myeloma, in spite of being told that if he didn't he would only last under a year. The case study is in the book. You can also download a copy of the case study at this link:
http://www.canceraction.org.gg/mgus-and-multiple-myeloma/case-study
I figured this could be interesting to read for the medical adviser as well.
blessings
ps the book is called 'living proof, a medical mutiny' by Michael Gearin-Tosh
This is only meant as info in general, not directed at you mum.
This man wrote a very interesting book about his journey of making an informed decision not to have chemo for myeloma, in spite of being told that if he didn't he would only last under a year. The case study is in the book. You can also download a copy of the case study at this link:
http://www.canceraction.org.gg/mgus-and-multiple-myeloma/case-study
I figured this could be interesting to read for the medical adviser as well.
blessings
ps the book is called 'living proof, a medical mutiny' by Michael Gearin-Tosh
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jet - Name: nzgirl
- Who do you know with myeloma?: me
- When were you/they diagnosed?: september 2013
- Age at diagnosis: 55
Re: Why not stop chemo and seek alternative treatment?
I am the one being ridiculed. And why? If there is no cure, then it makes sense for people to look elsewhere. My point is, the cure may very well be outside of conventional, but you will never know as most choose to not believe it could ever be. Some say as my last oncologist, if there was a cure somewhere else we would know about it, no you won't, because you will never believe it.
Re: Why not stop chemo and seek alternative treatment?
Hi Jet, Dee and All,
Jet, Thanks for posting that interesting article about the 'outrider' who defied all odds to survive at least 8 years. The article dates back to 2002 and reads like a history of early myeloma treatments.
Famous myeloma doctors such as Dr. Robert Kyle and Dr. Bart Barlogie are mentioned in the article. At that time, a myeloma prognosis was very dire, since there were not good treatments available targeted specifically to myeloma. The single patient being profiled used diet, supplements, enzymes, and other treatments to hold his myeloma in check. He had extensive bone damage and tried pamidronate briefly. The whole article is very comprehensive and good reading too!
I am sure that the doctors mentioned have moved on since then to the modern treatments available to us now. From thalidomide, which was approved for treating myeloma in 2002, on to Revlimid and pomalyst, which are all in the same category of drug...on to proteasome inhibitors such as Velcade and kyprolis. The category of antibody type treatments being in development even back in those days is mentioned.
Personally, I am very grateful to have been treated in this modern age. Whereas back in 2002 an 8 year survival was considered to be extraordinary, now it has been achieved by many patients.
Jet, Thanks for posting that interesting article about the 'outrider' who defied all odds to survive at least 8 years. The article dates back to 2002 and reads like a history of early myeloma treatments.
Famous myeloma doctors such as Dr. Robert Kyle and Dr. Bart Barlogie are mentioned in the article. At that time, a myeloma prognosis was very dire, since there were not good treatments available targeted specifically to myeloma. The single patient being profiled used diet, supplements, enzymes, and other treatments to hold his myeloma in check. He had extensive bone damage and tried pamidronate briefly. The whole article is very comprehensive and good reading too!
I am sure that the doctors mentioned have moved on since then to the modern treatments available to us now. From thalidomide, which was approved for treating myeloma in 2002, on to Revlimid and pomalyst, which are all in the same category of drug...on to proteasome inhibitors such as Velcade and kyprolis. The category of antibody type treatments being in development even back in those days is mentioned.
Personally, I am very grateful to have been treated in this modern age. Whereas back in 2002 an 8 year survival was considered to be extraordinary, now it has been achieved by many patients.
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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: Why not stop chemo and seek alternative treatment?
That is an interesting link Jet posted about Michael Gearin-Tosch, the case of the 0.005% survivor. Mr. Gearing-Tosch must have been a man of some resources as a British citizen under their health care system to get so many second opinions from some of the leading myeloma specialist at the time, especially those in America, without insurance.
The paper claims to have been peer reviewed which appears to mean that some other oncologist listed read it, but that does not mean it was accepted by them as fact nor for publication in journals like Blood, Science, or The American Journal of Medicine, and they never will.
This paper takes one cherry picked individual using coffee enema and nutritional therapy to treat myeloma and compares that to the results of a much broader population of individuals of the accepted myeloma therapies in 2002. That upfront is bad science. Why not do the reverse and take a cherry picked best individual survivor using conventional accepted treatment and compare them against the population averages for those using coffee enemas and nutritional therapy? What would that comparison look like?
I guess people see what they want to see when they read this. Is the case of one cherry picked individual, diagnosed with myeloma from 1994, 20 years ago from now, who at the time this paper was published was an eight year survivor using coffee enemas and nutritional therapy, and being compared to the standard therapy and treatment for myeloma at the time this paper was published, 2002, now 12 years ago, being made as the case for why coffee enemas and diet are a comparable approach to treating myeloma than the novel agents, thalidomide, Revlimid, Velcade, pomalidomide [Pomalyst], Kyprolis, antibody treatments and more, all developed after 2002, and the numerous clinical trials supporting the use of the agents in myeloma therapy and the real results in extending survival time, with good quality of life that have being achieved? And what about all the individual personal accounts of the people here on the Beacon who have had successes with the new novel agent drugs and SCT today, not from 12 years ago?
At least this paper does not make the claim that Michael Gearin-Tosch was cured and from what I can tell is not claiming his results are superior to the conventional therapies of 2002, just comparable, but remember, this is just one guy from 12 years ago.
I would not make my decision about treatment just based on the results of one individual. Two years ago I attended the Multiple Myeloma Research Foundation (MMRF) Symposia in San Francisco. I would say there were about 300 people there with myeloma. A speaker asked people to raise their hand based on the number of years they had been living with myeloma. As expected as he ticked up in years the number hands held up where fewer and fewer, and eventually there were a few people who were 20 year survivors, about right for a crowd of 300.
There still is no cure for myeloma. There was one man, an 18 year survivor, who had only been treated with 3 stem cell transplants (SCT) and nothing else. He was an older man at the table next to me and looked to be in good shape for his age. His doctor was from UCSF and a speaker at the symposia. I did not know why he was only treated with SCT, I was very curious and still am. But I would not want to only use SCT only as my treatment protocol just because he made it to 18 years doing that.
The paper claims to have been peer reviewed which appears to mean that some other oncologist listed read it, but that does not mean it was accepted by them as fact nor for publication in journals like Blood, Science, or The American Journal of Medicine, and they never will.
This paper takes one cherry picked individual using coffee enema and nutritional therapy to treat myeloma and compares that to the results of a much broader population of individuals of the accepted myeloma therapies in 2002. That upfront is bad science. Why not do the reverse and take a cherry picked best individual survivor using conventional accepted treatment and compare them against the population averages for those using coffee enemas and nutritional therapy? What would that comparison look like?
I guess people see what they want to see when they read this. Is the case of one cherry picked individual, diagnosed with myeloma from 1994, 20 years ago from now, who at the time this paper was published was an eight year survivor using coffee enemas and nutritional therapy, and being compared to the standard therapy and treatment for myeloma at the time this paper was published, 2002, now 12 years ago, being made as the case for why coffee enemas and diet are a comparable approach to treating myeloma than the novel agents, thalidomide, Revlimid, Velcade, pomalidomide [Pomalyst], Kyprolis, antibody treatments and more, all developed after 2002, and the numerous clinical trials supporting the use of the agents in myeloma therapy and the real results in extending survival time, with good quality of life that have being achieved? And what about all the individual personal accounts of the people here on the Beacon who have had successes with the new novel agent drugs and SCT today, not from 12 years ago?
At least this paper does not make the claim that Michael Gearin-Tosch was cured and from what I can tell is not claiming his results are superior to the conventional therapies of 2002, just comparable, but remember, this is just one guy from 12 years ago.
I would not make my decision about treatment just based on the results of one individual. Two years ago I attended the Multiple Myeloma Research Foundation (MMRF) Symposia in San Francisco. I would say there were about 300 people there with myeloma. A speaker asked people to raise their hand based on the number of years they had been living with myeloma. As expected as he ticked up in years the number hands held up where fewer and fewer, and eventually there were a few people who were 20 year survivors, about right for a crowd of 300.
There still is no cure for myeloma. There was one man, an 18 year survivor, who had only been treated with 3 stem cell transplants (SCT) and nothing else. He was an older man at the table next to me and looked to be in good shape for his age. His doctor was from UCSF and a speaker at the symposia. I did not know why he was only treated with SCT, I was very curious and still am. But I would not want to only use SCT only as my treatment protocol just because he made it to 18 years doing that.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Why not stop chemo and seek alternative treatment?
Dee,
AIDS is not curable. If an AIDS patient is not treated life expectancy is about 1 year. If treated early, life expectancy is 30-50 years.. Not curable but very treatable.
If you look at life expectancy of myeloma patients over the last 20 years, it is beginning to look more and more like a treatable, chronic disease. I emphasis "beginning".
I hope your alternative treatment works for 100 years for you. But if your numbers do start moving in a negative direction, I hope you will seek modern treatment. Treatments that weren't available just 10 years ago.
And I now promise to get off your back!!
And I hope your first post of the year 2050 is "see I told you so"!
Take care
AIDS is not curable. If an AIDS patient is not treated life expectancy is about 1 year. If treated early, life expectancy is 30-50 years.. Not curable but very treatable.
If you look at life expectancy of myeloma patients over the last 20 years, it is beginning to look more and more like a treatable, chronic disease. I emphasis "beginning".
I hope your alternative treatment works for 100 years for you. But if your numbers do start moving in a negative direction, I hope you will seek modern treatment. Treatments that weren't available just 10 years ago.
And I now promise to get off your back!!
And I hope your first post of the year 2050 is "see I told you so"!
Take care
-
stann
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