I've been reading through the pages of this forum all evening and I'm happy to have found such a great pool of resources. Yet still I feel a little lost in my situation.
My mother was diagnosed with multiple myeloma almost two month ago, after she was hospitalised with five broken vertebrae (no damage to the kidneys so far). She started chemo almost immediately, originally it was planned for her to go through 16 cycles. She responded well and as far as I could tell, her side effects weren't as bad as I have seen in other cancer / chemo patients (but that, after all, is also a question of personal perception).
However, as she'd always been rather uncomfortable (or even suspicious) of conventional medicine, she's decided to stop her chemo now after the fourth cycle and is now resorting to alternative treatments. Her healer views illnesses as an expression of unresolved conflicts in the past. According to this view, her myeloma is a way of her body to heal itself. I know that the healer offers a range of treatments, including (astrological) homeopathy as well as biomagnetism and microcurrent treatments. I'm not sure exactly how to picture what such a treatment would look like, really. Apart from all that, she adjusted her diet (e.g. no sugar at all).
Now all this is not in addition to any conventional treatment (apart from painkillers), but as a replacement. According to her, such alternative treatments are not compatible with chemotherapy, which in her view poisons the body and is even a culprit of wiping out some patients (these are not my views, but it seems to be her conviction; I'm not sure in how far she has hopes to find actual cure by these treatments).
I struggle with her decision, but I'll respect whatever path she chooses. However I do wonder what to expect under these circumstances. How long are we looking at – is 1-2 years realistic, or is it a matter of months? Is there any chance the first four rounds of chemo bought her any time at all, even if she didn't do all 16 as planned?
I don't know what drugs exactly she was given, nor any values for her blood. She's rather reluctant to discuss any of this with me as she knows I don't entirely understand her decision at this point.
I know it's impossible to get an exact prognosis, but I would love to get a somewhat clearer picture. Thank you very much!
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mymmother - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 60
Re: Mother ditching all conventional treatment - what next?
Hi, I am not a doctor or a nurse or ANY form of medical advisor whatsoever.
But, I am a myeloma patient with a very active life and a very open mind with respect to medicine and homeopathic remedies.
It is a very hard decision for your mom, and I'm sure many well-meaning people will give her input. And her homeopathic provider truly believes in what he preaches.
That being said, I believe that conventional medicine and homeopathic can go hand in hand in many respects. But, I think it needs to be overseen by a specialist in the myeloma field. There is a reason that studies are performed in very controlled manners with huge groups of very well educated specialists to come up with the best forms of medicine to achieve the best survival outcomes, and an eye to quality of life.
There is a place where I think the two medical approaches can meet. If your mom can see that the conventional medicine can give her the survival that she will want, the homeopathic medicine can help with her quality of life in reducing pain and allowing her body to accept the chemo and various conventional medicines to work against the damage that is being done by the myeloma. Please read my posts about my current journey with my conventional approach to my myeloma. I am now in the midst of a stem cell transplant - which you can read about here in the forum in this thread:
"Debbie's Stem Cell Transplant Journey" (started Feb 11, 2016)
I am not now using homeopathic means, but plan that for my remission stage. My daughter is a Reiki Master and I have very good other providers in my area.
But, I am a myeloma patient with a very active life and a very open mind with respect to medicine and homeopathic remedies.
It is a very hard decision for your mom, and I'm sure many well-meaning people will give her input. And her homeopathic provider truly believes in what he preaches.
That being said, I believe that conventional medicine and homeopathic can go hand in hand in many respects. But, I think it needs to be overseen by a specialist in the myeloma field. There is a reason that studies are performed in very controlled manners with huge groups of very well educated specialists to come up with the best forms of medicine to achieve the best survival outcomes, and an eye to quality of life.
There is a place where I think the two medical approaches can meet. If your mom can see that the conventional medicine can give her the survival that she will want, the homeopathic medicine can help with her quality of life in reducing pain and allowing her body to accept the chemo and various conventional medicines to work against the damage that is being done by the myeloma. Please read my posts about my current journey with my conventional approach to my myeloma. I am now in the midst of a stem cell transplant - which you can read about here in the forum in this thread:
"Debbie's Stem Cell Transplant Journey" (started Feb 11, 2016)
I am not now using homeopathic means, but plan that for my remission stage. My daughter is a Reiki Master and I have very good other providers in my area.
Re: Mother ditching all conventional treatment - what next?
Hello, Mymom:
I just thought I would give an opinion and a couple of considerations. First off, it is not for me to say any other adult's seriously considered decisions on their health and their life is wrong. I do not want to be judgmental, and I am sure that there are issues and background that I am not aware of.
The decision to stop induction therapy in favor of the more speculative (unconventional) approaches, however, is potentially one with certain consequences, potentially "final" consequences, that may not afford a person the chance to go back later, to change their mind. You are the one who wrote the post, however, and I just thought I would share a couple of observations that might help you in your discussion with your Mom.
The meds for multiple myeloma are arguably not chemo (in some cases), in case your mother is hung up on that. For instance if the treatment is Revlimid, Velcade, and dexamethasone (RVD), arguably none of those drugs are "chemo". They are chemo in the sense that they all work against the multiple myeloma (the cancer). However, they have a mode of action different from classic chemo.
Revlimid is a derivative of thalidomide. That drug has a very fascinating history, but was originally developed as an anti-nausea drug for pregnant women. In other words, its side effects originally were not as bad as morning sickness. It was discovered by an ophthalmologist researcher to slow down some cellular blood reactions (anti-angiogenic activity). Dex is a steroid, which is an anti-inflammatory. Dex was originally prescribed to handle the side effects of older chemo drugs (as is done in other cancers), but remarkably was found to work against the multiple myeloma. Likewise, Velcade is a newer drug (relatively), but has a mode of action (inhibition of the proteasome) that is different from traditional chemo, which just wipes cells (bad and good). They all have side effects (like any strong medicine), but in a certain sense, its not chemo at all.
Secondly, after a complete induction therapy, particularly if an optimal response was achieved, many doctors in the recent past went without treatment (no maintenance). Patients in some cases were able to go a number of years (say 2 to 4) with no treatment, until it was needed again.
Thirdly, pipeline drugs are expected to further improve results. The new and future monoclonal antibodies (for example elotuzumab and daratumumab) have, it has been reported so far, only short-term side effects (infusion related, like a vaccine for a virus). This could carry the positive results forward for a longer time, potentially.
There are other arguments on the side of using available, established treatments, but I just wanted to give you a flavor of the other side of the coin. I am sure that there will be some benefit to the 4 rounds of treatment that your mother has had so far. However, stopping at that point will probably put her in a situation regarding prognosis to where it was about 10 to 15 years ago, which is not as good as it is today.
Good luck to you both.
I just thought I would give an opinion and a couple of considerations. First off, it is not for me to say any other adult's seriously considered decisions on their health and their life is wrong. I do not want to be judgmental, and I am sure that there are issues and background that I am not aware of.
The decision to stop induction therapy in favor of the more speculative (unconventional) approaches, however, is potentially one with certain consequences, potentially "final" consequences, that may not afford a person the chance to go back later, to change their mind. You are the one who wrote the post, however, and I just thought I would share a couple of observations that might help you in your discussion with your Mom.
The meds for multiple myeloma are arguably not chemo (in some cases), in case your mother is hung up on that. For instance if the treatment is Revlimid, Velcade, and dexamethasone (RVD), arguably none of those drugs are "chemo". They are chemo in the sense that they all work against the multiple myeloma (the cancer). However, they have a mode of action different from classic chemo.
Revlimid is a derivative of thalidomide. That drug has a very fascinating history, but was originally developed as an anti-nausea drug for pregnant women. In other words, its side effects originally were not as bad as morning sickness. It was discovered by an ophthalmologist researcher to slow down some cellular blood reactions (anti-angiogenic activity). Dex is a steroid, which is an anti-inflammatory. Dex was originally prescribed to handle the side effects of older chemo drugs (as is done in other cancers), but remarkably was found to work against the multiple myeloma. Likewise, Velcade is a newer drug (relatively), but has a mode of action (inhibition of the proteasome) that is different from traditional chemo, which just wipes cells (bad and good). They all have side effects (like any strong medicine), but in a certain sense, its not chemo at all.
Secondly, after a complete induction therapy, particularly if an optimal response was achieved, many doctors in the recent past went without treatment (no maintenance). Patients in some cases were able to go a number of years (say 2 to 4) with no treatment, until it was needed again.
Thirdly, pipeline drugs are expected to further improve results. The new and future monoclonal antibodies (for example elotuzumab and daratumumab) have, it has been reported so far, only short-term side effects (infusion related, like a vaccine for a virus). This could carry the positive results forward for a longer time, potentially.
There are other arguments on the side of using available, established treatments, but I just wanted to give you a flavor of the other side of the coin. I am sure that there will be some benefit to the 4 rounds of treatment that your mother has had so far. However, stopping at that point will probably put her in a situation regarding prognosis to where it was about 10 to 15 years ago, which is not as good as it is today.
Good luck to you both.
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JPC - Name: JPC
Re: Mother ditching all conventional treatment - what next?
Hi Mymom,
I think Dr. Libby did a pretty good job of addressing this kind of situation some time back.
I know I would be heartbroken if someone close to me chose not to consider any proven multiple myeloma treatment drugs whatsoever, or only for a very short period of time (whether the multiple myeloma drugs were used in combination with an integrative approach that included alternative treatment methods or strictly by themselves).
It's hard to predict what will happen next and when. But left untreated, multiple myeloma will usually end up causing an unnecessarily painful death with debilitating fractures, kidney failure and/or infections such as pneumonia due to having a compromised immune system. Conventional treatment won't likely cure your mother, but it will often allow a person to continue leading a relatively normal life for quite a number of years.
I wish you the best of luck with this delicate situation.
I think Dr. Libby did a pretty good job of addressing this kind of situation some time back.
I know I would be heartbroken if someone close to me chose not to consider any proven multiple myeloma treatment drugs whatsoever, or only for a very short period of time (whether the multiple myeloma drugs were used in combination with an integrative approach that included alternative treatment methods or strictly by themselves).
It's hard to predict what will happen next and when. But left untreated, multiple myeloma will usually end up causing an unnecessarily painful death with debilitating fractures, kidney failure and/or infections such as pneumonia due to having a compromised immune system. Conventional treatment won't likely cure your mother, but it will often allow a person to continue leading a relatively normal life for quite a number of years.
I wish you the best of luck with this delicate situation.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother ditching all conventional treatment - what next?
Hi mymmother,
It is really difficult to say what your mother's prognosis is at this point based on the limited information you have. It would depend on how far her disease had progressed at the time of her diagnosis, whether she has markers for more aggressive ("high-risk") disease, and what sort of treatment she received.
It also is not clear how long your mother was treated. You say that she was treated for 4 "cycles", and the plan was for 16 cycles, which makes me wonder if you are using "cycle" to mean a week. Usually a treatment cycle is 4 weeks, although it can be shorter or longer, depending on the treatment regimen.
I think how long she has been treated is actually the key issue in terms of her prognosis without further conventional treatment. If she was treated for only a month, that really isn't very much treatment. If it was as much as 4 months, then that is a good amount of treatment, even though many myeloma patients these days get treatment for longer than that.
As others already have commented, you are in a difficult position. I wish you and your mother the best.
It is really difficult to say what your mother's prognosis is at this point based on the limited information you have. It would depend on how far her disease had progressed at the time of her diagnosis, whether she has markers for more aggressive ("high-risk") disease, and what sort of treatment she received.
It also is not clear how long your mother was treated. You say that she was treated for 4 "cycles", and the plan was for 16 cycles, which makes me wonder if you are using "cycle" to mean a week. Usually a treatment cycle is 4 weeks, although it can be shorter or longer, depending on the treatment regimen.
I think how long she has been treated is actually the key issue in terms of her prognosis without further conventional treatment. If she was treated for only a month, that really isn't very much treatment. If it was as much as 4 months, then that is a good amount of treatment, even though many myeloma patients these days get treatment for longer than that.
As others already have commented, you are in a difficult position. I wish you and your mother the best.
Re: Mother ditching all conventional treatment - what next?
Hi,
It's been a while since I posted here. I needed some time to think, talk, and also some distance. I wanted to thank you all very for your replies, I really appreciate it! I've read through them and the links you offered, and I think I got a pretty good picture of this terrible (but from a more scientific point of view, quite interesting) cancer.
That being said, I've had a long and honest talk with my mother. I do think one of the points is that all the unintelligible 'doctor-talk' scares her to some point, and to be honest I'm under the impression that she has a limited, i.e. not very detailed, understanding of what's actually happening in her body as well as about the options that conventional methods could offer her. I have offered to have a look at all that together, maybe in a language she could better understand. She doesn't want to; she feels she's well informed and has all the information she needs from her practitioner, who she says is very experienced (she told me he has successfully treated myeloma patients - I'm not so sure about that, but I have no way of telling). She uses homeopathic remedies complementary to her/her practitioner's approach, which is very esoteric (and, as I find, highly dubious, and taking a closer look at it really didn't make me feel any better). She feels that this way of treatment is not combinable with any conventional treatment, although she does take painkillers.
She couldn't give me any more detail about the progression of her disease, nor about the markers. I also couldn't find out what exactly her treatment consisted of, but it was for no more than four weeks. When I ever so cautiously tried to inquire about the specifics of her myeloma and the treatment she had received, she looked at me as if she'd never heard these words before. And she declined my offer to have a look at her patient's report together - I think the alternative is just much simpler to understand and therefore maybe, in a sense, more comforting and more credible to her mind.
All that being said, at the moment (two months after ditching conventional treatment) she seems fine. After our talk she did at least go in to her (medical) doctor for some blood tests; she says her doctor was amazed by the excellent values. She does still have a little backache and a bit of a hunch. She refers to that as 'aftereffects' and treats it with the Feldenkrais Method. At this point it somehow feels as if this was all just a nightmare and things are almost back to normal - this however is the vibe I get when I listen to her. I'm not so sure about that yet, I fear there might be a big backlash lurking around the corner. But who am I to tell, maybe miracles happen after all.
Again, I want to thank you all for your support, it's a great help even if I'm not a very active replyer at the moment. I'll keep you posted, and if this thing turns out to work against all odds, I'll share the methods and I'll want them researched!
All the best to you and your loved ones. Stay strong and take care!
It's been a while since I posted here. I needed some time to think, talk, and also some distance. I wanted to thank you all very for your replies, I really appreciate it! I've read through them and the links you offered, and I think I got a pretty good picture of this terrible (but from a more scientific point of view, quite interesting) cancer.
That being said, I've had a long and honest talk with my mother. I do think one of the points is that all the unintelligible 'doctor-talk' scares her to some point, and to be honest I'm under the impression that she has a limited, i.e. not very detailed, understanding of what's actually happening in her body as well as about the options that conventional methods could offer her. I have offered to have a look at all that together, maybe in a language she could better understand. She doesn't want to; she feels she's well informed and has all the information she needs from her practitioner, who she says is very experienced (she told me he has successfully treated myeloma patients - I'm not so sure about that, but I have no way of telling). She uses homeopathic remedies complementary to her/her practitioner's approach, which is very esoteric (and, as I find, highly dubious, and taking a closer look at it really didn't make me feel any better). She feels that this way of treatment is not combinable with any conventional treatment, although she does take painkillers.
She couldn't give me any more detail about the progression of her disease, nor about the markers. I also couldn't find out what exactly her treatment consisted of, but it was for no more than four weeks. When I ever so cautiously tried to inquire about the specifics of her myeloma and the treatment she had received, she looked at me as if she'd never heard these words before. And she declined my offer to have a look at her patient's report together - I think the alternative is just much simpler to understand and therefore maybe, in a sense, more comforting and more credible to her mind.
All that being said, at the moment (two months after ditching conventional treatment) she seems fine. After our talk she did at least go in to her (medical) doctor for some blood tests; she says her doctor was amazed by the excellent values. She does still have a little backache and a bit of a hunch. She refers to that as 'aftereffects' and treats it with the Feldenkrais Method. At this point it somehow feels as if this was all just a nightmare and things are almost back to normal - this however is the vibe I get when I listen to her. I'm not so sure about that yet, I fear there might be a big backlash lurking around the corner. But who am I to tell, maybe miracles happen after all.
Again, I want to thank you all for your support, it's a great help even if I'm not a very active replyer at the moment. I'll keep you posted, and if this thing turns out to work against all odds, I'll share the methods and I'll want them researched!
All the best to you and your loved ones. Stay strong and take care!
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mymmother - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 60
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