Is it typical behavior for an oncologist to not want to treat a multiple myeloma patient if the patient just prefers to use alternative treatments for a period of time before resorting to chemo?
My M spike has been fairly stable since my diagnosis in January 2014. I have had little problems in the last 7 months and am continuing to use some enzymes and a drug used to treat malaria and seem to be holding my own. I am 76 years old.
I wanted to just go every 2 months to the doctor to get blood work done and check in, but I seem to be getting the idea that he only is interested in treating me if I use chemo.
If this is the common practice, who does one go to to be checked occasionally? Is this a family doctor thing?
Thanks for any input.
Forums
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
Hi Barbara,
You say "but I SEEM to be getting the idea that he only is interested in treating me if I use chemo".
Have you asked the doctor point blank in plain terms whether he would periodically monitor you if you choose to put off chemo for now?
I'll avoid commenting on the subject of chemo treatment versus no treatment if you are symptomatic
You say "but I SEEM to be getting the idea that he only is interested in treating me if I use chemo".
Have you asked the doctor point blank in plain terms whether he would periodically monitor you if you choose to put off chemo for now?
I'll avoid commenting on the subject of chemo treatment versus no treatment if you are symptomatic
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
I have not point out asked him, but I notice I have not gotten returned calls from his office and the doctor that referred me to him asked me when I was in to him what the diagnosis was. He had not heard from him either and that had been in a 7 month time period.
I have an appointment September 3rd so we'll see what happens then. In the meantime, I should have said that I have no symptoms of multiple myeloma yet. No CRAB -- just the M spike, and he said it was multiple myeloma because my bone morrow was over 10%, but just slightly.
I have an appointment September 3rd so we'll see what happens then. In the meantime, I should have said that I have no symptoms of multiple myeloma yet. No CRAB -- just the M spike, and he said it was multiple myeloma because my bone morrow was over 10%, but just slightly.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
OK, to be clear, you are smoldering and your current oncologist is not currently suggesting treatment, right? You are simply doing some preventative steps like taking anti-malarial drugs in the hope that you wont' progress? None of the docs I've come across would abandon me if I were exploring alternative measures under these circumstances (I am smoldering, take fenofibrate (Tricor) and quite a few supplements ... which I guess you could put in the same sort of category as far as what you are doing).
I guess I could see there being a potential issue with some docs if you were indeed symptomatic and doing something like the Gonzalez protocol .... but I still think that the vast majority of multiple myeloma docs would still agree to continue to monitor you even under those circumstances ... and catch you if you should fall down with your alternative attempts .
To me it sounds more like a case of you having a generally unresponsive doctor. Therefore, you might be well advised to find somebody that is more responsive to your inquiries?
BTW, which anti-malarial are you taking?
I guess I could see there being a potential issue with some docs if you were indeed symptomatic and doing something like the Gonzalez protocol .... but I still think that the vast majority of multiple myeloma docs would still agree to continue to monitor you even under those circumstances ... and catch you if you should fall down with your alternative attempts .
To me it sounds more like a case of you having a generally unresponsive doctor. Therefore, you might be well advised to find somebody that is more responsive to your inquiries?
BTW, which anti-malarial are you taking?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
I am going to side step the debate of Holistic v Chemo, to provide some insight into Doctor -Patient.
The late Steve McQueen tried this tactic, too, with his very treatable cancer. Tried Laetrile, enemas, holisitic, etc and then at the 11th hour turned to conventional oncology, and tried to blame his oncologist, for his then terminal condition.
I think the MD is well within his rights to refuse to treat you, or atleast express ambivalence.
If you are going to design your own treatment program, ignore his/her suggestions, and only use his/her lab--then you can just as well use the lab of your GP to mark your progress.
The common Law holds that there is no breach of the standard of care, and no action will lie, if a Doctor refuses to treat you--and you are not presenting in extremis.
Most MD's will also likely refuse to treat under these circumstances, as they are having their professional judgment subjugated to the patients whims. They are in a "Damned if I do, damned if I don't" situation. Afterall, do you have cancer or not ? (The M spike says you have multiple myeloma)
What is he / she to treat ?
MD's don't treat just "M Spikes" any more than they just treat an "X-ray".
Some MD's may play along, but will document effectively the non-compliance / Poor patient control--so they won't get sued or criticized later. A/K/A--The Steve McQueen rule.
Moral of the story: You can certainly dance to your own tune if you wish, but you can't make others dance with you. Even if you are 76.
Good Luck.
The late Steve McQueen tried this tactic, too, with his very treatable cancer. Tried Laetrile, enemas, holisitic, etc and then at the 11th hour turned to conventional oncology, and tried to blame his oncologist, for his then terminal condition.
I think the MD is well within his rights to refuse to treat you, or atleast express ambivalence.
If you are going to design your own treatment program, ignore his/her suggestions, and only use his/her lab--then you can just as well use the lab of your GP to mark your progress.
The common Law holds that there is no breach of the standard of care, and no action will lie, if a Doctor refuses to treat you--and you are not presenting in extremis.
Most MD's will also likely refuse to treat under these circumstances, as they are having their professional judgment subjugated to the patients whims. They are in a "Damned if I do, damned if I don't" situation. Afterall, do you have cancer or not ? (The M spike says you have multiple myeloma)
What is he / she to treat ?
MD's don't treat just "M Spikes" any more than they just treat an "X-ray".
Some MD's may play along, but will document effectively the non-compliance / Poor patient control--so they won't get sued or criticized later. A/K/A--The Steve McQueen rule.
Moral of the story: You can certainly dance to your own tune if you wish, but you can't make others dance with you. Even if you are 76.
Good Luck.
-
Rneb
Re: Doctor does not want to treat me - is that common?
Rneb makes some really good points. But I personally think that the issues that he raises would come more into play if you were symptomatic and turning down conventional treatment in favor of alternative treatments (I too will avoid that discussion here). But I could now envision that some doctors might be sensing a potentially bad professional situation, as Rneb suggests (and therefore avoiding you), even if you were experimenting with these treatments in a smoldering situation where no conventional treatment has been recommended yet.
In any case, I think an open and frank discussion with the doc on September 3rd would be in order. That way you can be clear on where he stands on all this.
In any case, I think an open and frank discussion with the doc on September 3rd would be in order. That way you can be clear on where he stands on all this.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
Thanks to everyone for the input. My oncologist did say that I had multiple myeloma, not smoldering multiple myeloma. I do not have any symptoms yet and that is why I want to try alternative treatments. I can certainly see his point if he does not want to treat me. I realize he makes his money and is in business to treat patients who have cancer with chemo. I just thought it was strange that he did not tell me this up front but just kept saying he would see me every 3 months for blood work and we would go from there. Then, his office stopped returning phone calls.
I guess I will go on the next scheduled appointment but I was just wondering if this was common in the cancer world and if indeed people go to their primary care doctor for blood work.
Thanks again for the help.
I guess I will go on the next scheduled appointment but I was just wondering if this was common in the cancer world and if indeed people go to their primary care doctor for blood work.
Thanks again for the help.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
I think Rneb makes a lot of good points. I do not like putting the labels “alternative” and “chemo” or “conventional” on myeloma treatments. I look at treatments as those that “work ” and those that “do not work”. The MD, like most, is treating his myeloma patients using treatments that have shown to “work” on the basis of clinical trials and are FDA approved. And this MD, like most, would most likely be receptive to hearing the second opinion of another doctor who practices medicine similarly, especially a myeloma specialist.
But if somebody wants to follow the protocols of some other doctor or non-doctor that promotes “alternative” therapies because they seem them as superior to “chemo” or “conventional” therapy, then why don’t they just see that doctor then for their medical care? Do they not trust them? Are they not qualified to provide the care and have the skill needed to run the labs and monitor disease progress?
Many of the promoters of these alternative therapies are openly critical of what they call “conventional” or “chemo”, ignoring evidence that they work much better than whatever alternative therapy it is they are promoting. I have found the majority, but not necessarily all, of the people who follow these promoters of alternative therapies who disparage mainstream medicine have the same mind set. I have seen them eager to debate conventional vs alternative and go on about medical conspiracies, big pharma, and the corporate money machine in medicine.
Why would a doctor want to take on a patient that has an ideology about “conventional” medicine that is hostile to what they have to offer for treatments? I know my oncologist's schedule is very busy and he has his hands full with the patients who do follow his treatments and therapies. Why take on someone who does not and is doing their own thing? I am sure some doctors would, but I can see many would not bother and just wait till they come back after they have given up on the alternative approach.
I am going to enter in on the “alternative or holistic” vs “chemo” debate because myeloma is serious business and the choices made can have serious consequences. Anyone who has been reading the Beacon for while, or has met and interacted with other myeloma patients, has heard many stories of late or misdiagnosis of their myeloma and how, in the time they were going untreated, significant bone damage set in, especially degenerated vertebrae in the back that severally curtailed their quality of life. There are also stories of irreversible kidney damage leading to a lifetime of dialysis.
Early identification of myeloma and treatment using the novel agents used in “conventional” myeloma treatment – Velcade, Revlimid, thalidomide, Kyprolis, dexamethasone, etc and their combinations VTD PACE, etc – have been shown to be effective in stopping the progress of myeloma and putting the patient in remission before the onset of serious bone and kidney damage. In my experience, the proponents of alternative therapies do not seem to want to acknowledge that or talk about it.
“Conventional” treatment is not a cure, but it can provide many years of quality life for many people who have myeloma that is responsive to treatment. If I were to follow “alternative” medicine, I would want to be real confident that it is effective and working better than “conventional” and the myeloma was not silently destroying my bones and kidneys while I seemingly felt fine and healthy.
But if somebody wants to follow the protocols of some other doctor or non-doctor that promotes “alternative” therapies because they seem them as superior to “chemo” or “conventional” therapy, then why don’t they just see that doctor then for their medical care? Do they not trust them? Are they not qualified to provide the care and have the skill needed to run the labs and monitor disease progress?
Many of the promoters of these alternative therapies are openly critical of what they call “conventional” or “chemo”, ignoring evidence that they work much better than whatever alternative therapy it is they are promoting. I have found the majority, but not necessarily all, of the people who follow these promoters of alternative therapies who disparage mainstream medicine have the same mind set. I have seen them eager to debate conventional vs alternative and go on about medical conspiracies, big pharma, and the corporate money machine in medicine.
Why would a doctor want to take on a patient that has an ideology about “conventional” medicine that is hostile to what they have to offer for treatments? I know my oncologist's schedule is very busy and he has his hands full with the patients who do follow his treatments and therapies. Why take on someone who does not and is doing their own thing? I am sure some doctors would, but I can see many would not bother and just wait till they come back after they have given up on the alternative approach.
I am going to enter in on the “alternative or holistic” vs “chemo” debate because myeloma is serious business and the choices made can have serious consequences. Anyone who has been reading the Beacon for while, or has met and interacted with other myeloma patients, has heard many stories of late or misdiagnosis of their myeloma and how, in the time they were going untreated, significant bone damage set in, especially degenerated vertebrae in the back that severally curtailed their quality of life. There are also stories of irreversible kidney damage leading to a lifetime of dialysis.
Early identification of myeloma and treatment using the novel agents used in “conventional” myeloma treatment – Velcade, Revlimid, thalidomide, Kyprolis, dexamethasone, etc and their combinations VTD PACE, etc – have been shown to be effective in stopping the progress of myeloma and putting the patient in remission before the onset of serious bone and kidney damage. In my experience, the proponents of alternative therapies do not seem to want to acknowledge that or talk about it.
“Conventional” treatment is not a cure, but it can provide many years of quality life for many people who have myeloma that is responsive to treatment. If I were to follow “alternative” medicine, I would want to be real confident that it is effective and working better than “conventional” and the myeloma was not silently destroying my bones and kidneys while I seemingly felt fine and healthy.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Doctor does not want to treat me - is that common?
The interesting twist here is that Barbara has no CRAB symptoms and doesn't have an extremely high plasma cell percentage and there are no divulged adverse cytogenetics. So, by all conventional measures (unless I'm missing some key piece of information), she is a non-ultra-high-risk smoldering patient and conventional treatment is therefore not called for at this stage (unless you happen to be participating in an early-treatment SMM clinical trial). This begs the question why her doctor is recommending treatment (unless I've misread this situation)??
My philosophy is if one is symptomatic, that one has reached a tipping point where conventional treatment really is the only proven option. Having said that, I'm also completely for smoldering patients experimenting with alternative treatments to stave off progression to symptomatic multiple myeloma....with the buy-in from their multiple myeloma specialists (which is the situation in my particular case). In the case of a smoldering patient (with the possible exception of ultra-high risk SMM), it's not like a person is substituting alternative treatments for conventional treatment.
My philosophy is if one is symptomatic, that one has reached a tipping point where conventional treatment really is the only proven option. Having said that, I'm also completely for smoldering patients experimenting with alternative treatments to stave off progression to symptomatic multiple myeloma....with the buy-in from their multiple myeloma specialists (which is the situation in my particular case). In the case of a smoldering patient (with the possible exception of ultra-high risk SMM), it's not like a person is substituting alternative treatments for conventional treatment.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
Quote-Lady--
"No CRAB -- just the M spike, and he said it was multiple myeloma because my bone morrow was over 10%, but just slightly."
* * * * * ** ** * *
Methinks the lady and her Oncologists are not communicating on a very basic concept.
Oncos--"You have multiple myeloma".
Lady--"I'm Smoldering".
* * * * * * * * **
Methinks Proteins ( M Spike) at or greater than 10 % = Active MM--with or without Bone damage.
I was a 10.3% M Spike --at Diagnosis. (0.7mg/dl .....to be precise)--No JB Proteins; Clean Bone Biopsy; --but a large , walnut sized, plasmacytoma had already been surgically removed from my front left sinus Duct / left eye orbit. Stage I-II.
I think the lady needs to accept that she has multiple myeloma (active). Prolly the Low-secretory variety.
If she wishes something other than conventional therapy--fine--go for it.
Bashing the MD for being "mainstream", does nothing to change reality.
Good luck.
"No CRAB -- just the M spike, and he said it was multiple myeloma because my bone morrow was over 10%, but just slightly."
* * * * * ** ** * *
Methinks the lady and her Oncologists are not communicating on a very basic concept.
Oncos--"You have multiple myeloma".
Lady--"I'm Smoldering".
* * * * * * * * **
Methinks Proteins ( M Spike) at or greater than 10 % = Active MM--with or without Bone damage.
I was a 10.3% M Spike --at Diagnosis. (0.7mg/dl .....to be precise)--No JB Proteins; Clean Bone Biopsy; --but a large , walnut sized, plasmacytoma had already been surgically removed from my front left sinus Duct / left eye orbit. Stage I-II.
I think the lady needs to accept that she has multiple myeloma (active). Prolly the Low-secretory variety.
If she wishes something other than conventional therapy--fine--go for it.
Bashing the MD for being "mainstream", does nothing to change reality.
Good luck.
-
Rneb
22 posts
• Page 1 of 3 • 1, 2, 3
Return to Treatments & Side Effects