Hi. I'm new to the forum. I appreciate that you all are here. My 70 y.o. mother was dx'd with IgG kappa multiple myeloma in March 2010 after having numerous rib/spine compression fractures and severe pain. At diagnosis, her M spike was 5.5, IgG 7150, and beta 2 at 3.2. Her kidney functions have remained normal, and she has very mild borderline anemia with increased monocytes. Of course her total protein is high. One doctor said she was stage III then the multiple myeloma specialist said she was stage II (IPSS related to beta 2).
She has seen 2 oncologists, the second being a multiple myeloma specialist. Also she is seeing integrative medicine doctor through a university who has her on a nutritional regimen and supplement regimen.
She was recommended to start on Rex/dex - and chose to not have treatment but rather see if nutrition and supplements could bring numbers down. We have been amazed to watch the numbers inch down... her anemia completely resolved but now on last tests is showing mildly anemic again. We are learning about the roller coaster ride multiple myeloma is. Her IgG came down from 7150 to 6510, the M spike from 5.48 to 4.51, and the beta 2 went down to 2.7 - with no treatment. Again, kidney function remains normal.
On her last set of labs in mid July, again M protein, IgG inched down. But, beta 2 went up to 4 and her kappa FLC and sed rate have doubled. She saw multiple myeloma oncologist again who of course recommends Rex/Dex. Now my mom is considering it, but it leery, she has always been someone very sensitive to many medications.
Because her numbers were inching down, she wants to stay on her diet and supplements, but the oncologist wants her off of everything except a multi and fish oil.
My questions to the forum are:
1. Have any of you or your friends/family/loved ones treated multiple myeloma with ONLY diet and supplements? and did your numbers go down/up/normalize over time?
2. Has anyone stayed on their entire supplement regimen while on Rev/dex, even if your doctor recommended to go off of them? If so, did you still have a good response?
Of note, the supplements are all the usual, not herbs or others that are unusual or likely to have issues. I know if an M.D. responds to me here will state the usual about not being FDA approved, but I am not one that thinks the FDA does it's true job in that arena, when there are many drugs out there that harm people before they are pulled by the pharmaceutical companies, so that argument just doesn't hold water with me.
I'm hoping to hear from any of you who have actual experience with staying on supplements while taking treatment, especially the Rev/dex regimen, as opposed to hearing admonishments by medical establishment. - or anyone who has used only diet and supplements to treat multiple myeloma and how that has gone for you.
Thank you for your time reading this.
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Purple Butterfly - Name: Purple Butterfly
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 70
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
Actually many folks criticize the FDA for many things, but you have to admit that their job has gotten a lot harder over the last decade without any seeming appreciation by the folks that fund the FDA, Congress that is.
Of course, being the MD here, I'd recommend a treatment for her myeloma that has been tested and shown to work as this will decrease the risk of her suffering fractures, infections, or kidney failure. I'd also mention that beyond a specially formulated ginger compound for chemotherapy-induced nausea, there is no proof that any supplement has helped a cancer patient in any way.
All that said, there is more we don't know about diseases than we know. There are (or we will develop) newer and better treatments and certainly some supplements have at least some active components. But that's a tough road, it's expensive, and you never know what you are going to get.
I am a BIG proponent of weight loss and healthy living. There is emerging data in metastatic tumors (most mature in breast cancer, but now trickling down to other solid tumors and hematologic cancers, including myeloma) that weight loss can actually be an at least weakly effective anticancer therapy. You have to understand, I live in Ohio where obesity is incredibly common. I wouldn't suggest dropping underneath a BMI of 20 in a myeloma patient (or a BMI of 18 in healthy people), but weight loss is a consideration because most Ohio citizens could afford to drop more than just a few pounds. This transitions nicely to my healthy eating philosophy -- the easiest way to lose weight without being hungry -- eat unprocessed food. You only eat what you can find raw or what you cook. No restaurant food, no carry-out, no Cheetos, no McDonald's milkshakes. It takes more time and it's likely to be more expensive, but it is no question healthier.
I wish your mother well and hope her myeloma stays quiet.
Of course, being the MD here, I'd recommend a treatment for her myeloma that has been tested and shown to work as this will decrease the risk of her suffering fractures, infections, or kidney failure. I'd also mention that beyond a specially formulated ginger compound for chemotherapy-induced nausea, there is no proof that any supplement has helped a cancer patient in any way.
All that said, there is more we don't know about diseases than we know. There are (or we will develop) newer and better treatments and certainly some supplements have at least some active components. But that's a tough road, it's expensive, and you never know what you are going to get.
I am a BIG proponent of weight loss and healthy living. There is emerging data in metastatic tumors (most mature in breast cancer, but now trickling down to other solid tumors and hematologic cancers, including myeloma) that weight loss can actually be an at least weakly effective anticancer therapy. You have to understand, I live in Ohio where obesity is incredibly common. I wouldn't suggest dropping underneath a BMI of 20 in a myeloma patient (or a BMI of 18 in healthy people), but weight loss is a consideration because most Ohio citizens could afford to drop more than just a few pounds. This transitions nicely to my healthy eating philosophy -- the easiest way to lose weight without being hungry -- eat unprocessed food. You only eat what you can find raw or what you cook. No restaurant food, no carry-out, no Cheetos, no McDonald's milkshakes. It takes more time and it's likely to be more expensive, but it is no question healthier.
I wish your mother well and hope her myeloma stays quiet.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
James has stayed on supplements all the way through his induction therapy and apheresis, with the blessing of his hematologist, and with amazing results.
Contact me through our website or through this forum if you want more information.
By the way, the doctor's view above about there being no evidence for supplements affecting cancer is by no means universal, with all due respect. I would agree wholeheartedly with his suggestion about maintaining a healthy weight and eating whole, unprocessed foods though.
Good luck!
Contact me through our website or through this forum if you want more information.
By the way, the doctor's view above about there being no evidence for supplements affecting cancer is by no means universal, with all due respect. I would agree wholeheartedly with his suggestion about maintaining a healthy weight and eating whole, unprocessed foods though.
Good luck!
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carlinandjames - Name: Carlin and James
- Who do you know with myeloma?: James
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 39
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
Many myeloma patients are taking Decamathasone as part of their drug therapy. This drug has many side effects, one of which is weight gian.
Dr. Hofmeister,
How can a myeloma patient possibly sustain a BMI of 20 when taking this corticosteroid?
Dr. Hofmeister,
How can a myeloma patient possibly sustain a BMI of 20 when taking this corticosteroid?
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KAD
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
Hi everyone. It's been 6 months since since my original post above. I would like to share our experiences. I'm not recommending anything here - only sharing my mother's experience. She was diagnosed in May 2010 with stage 3, IgG kappa multiple myeloma. She was 70 at diagnosis and has since turned 71. Before multiple myeloma diagnosis, she was previously healthy, on no medications, and very active.
At diagnosis my mom had borderline anemia, low albumin, a high CRP, high sed rate, but her calcium and renal function were and have remained normal. Here are her highs of multiple myeloma markers: M protein 5.75. IgG (range 700-1600) 8030. Beta-2 microglobulin (range 0.6-2.4) 4. Serum free light chain kappa 121 ((normal 3.3-19.4). Her bone marrow plasma index was 18%. She had numerous rib/vertebral fractures and radiographic/CT/MRI evidence of multiple myeloma lesions.
My mother refused chemotherapy (Rev/dex). Her concern was side effects and quality of life and a lifelong fear of and true sensitivity to medications (numerous drug allergies) She chose to see a physician at a Center for Integrative Medicine at a state university. This particular doctor sees patients with many issues, not just cancer, and did not presume to cure her multiple myeloma. His recommendations were supplements (fish oil, calcium/vitamin D, cinnamon, to name a few) and a pretty strict gluten-free diet. His goal was to strengthen her so that she could withstand whatever treatment came along. He did suggest that she follow her oncologist recommendations and yet respected her choice to not take Rev/dex. This doctor checks her multiple myeloma labs monthly. As any of you who have been on Rev/dex know, the general standard of care with labs is weekly CBCs while on the med but usually the multiple myeloma markers are not checked until after 3 to 4 months of Rev/dex to see response.
Of note, with only the gluten-free diet and numerous supplements (beyond what the integrative medicine doctor recommended), her borderline anemia and other abnormal labs (including low albumin and abnormal thyroid function) completely normalized. Her hemoglobin and hematocrit have remained normal - no anemia any more. And, her multiple myeloma numbers remained relatively steady.
In September 2010, she ended up in hospital with pain and numerous vertebral fractures. Her M protein and FLC were creeping up. Oncologist again recommended treatment. After 6 days of Rex/dex (including first pulse dose of dex) she was admitted to the hospital with pneumonia. The cancer doctor said her pneumonia was unrelated to Rev/dex, but the pulmonary doctor said, "we really don't know.. it COULD be related to the Rev/dex." After she recovered from that, she went back on Rev/dex for another 6 days again before developing side effects - oncologist told her to stop medicine which she did. Her total nonconsecutive treatment with Rev/dex was 12 days.
After the first six six days of treatment, my mother's multiple myeloma numbers dropped significantly and her beta-2 completely normalized. I actually contacted the maker of Revlimid, Celgene, to see if they had any studies to support this quick of a response. They were very helpful and interested to hear of such a quick response but had no studies to support this that they could discuss with me.
My mother's labs after the next six days of treatment (now a total of only 12 days) showed that ALL of her multiple myeloma markers had normalized: beta-2, serum free light chains, IgG were within normal limits. Her M protein had come down to 0.310 (310) which I believe puts her back into an MGUS category? The only test that has not been repeated for any definitive staging of remission is a bone marrow biopsy.
It was a difficult painful recovery from the pneumonia and multiple vertebral fractures she had in September. She was on morphine 24/7 for about seven months for the pain from the fractures (or maybe bone pain too). To help with the pain, she had radiofrequency ablation at several levels of her spine (this is minimally invasive). She had relief from her back pain and then went through withdrawal from the morphine. That is four months ago, and now she still gets pain, but doesn't even take a Motrin right now.
When my mother saw her oncologist, he was excited about her numbers of course... said he had never seen multiple myeloma numbers so quickly on such a short time on Revlimid/dex. Once he discovered that she did not continue the Rev/dex (even though he had told her to stop it related to side effects), he actually became angry with her and not very nice or professional. It was My Way or the Highway. From everything I have read and believe, every one of us has the right to choose our treatment and to find support. She is hardly the first cancer patient to choose to not take therapy! She will not go back to him.
Needless to say, the Celgene rep did not contact me after I sent them the latest information. Maybe they don't want to run studies to see if some multiple myeloma patients, even stage 3, could respond so quickly and be allowed to experience fewer side effects? Maybe my mother will be one of very few exceptions... I don't know. Like all with multiple myeloma, we await her lab results each month... and are grateful that her pain has been controlled without narcotics... and that she is able to have more activity in her life...
Now that Revlimid is in question related to secondary cancers, it seems (to me) if one does choose Revlimid, it is all that more essential to follow labs even closer? What IF some newly diagnosed multiple myeloma patients could actually respond in record time? and have fewer side effects? what IF the supplements and the diet actually facilitated this?
I apologize for the length and details but hope that someone can find hope in this message and learn something from my mother's experience. Wishing you all well...
At diagnosis my mom had borderline anemia, low albumin, a high CRP, high sed rate, but her calcium and renal function were and have remained normal. Here are her highs of multiple myeloma markers: M protein 5.75. IgG (range 700-1600) 8030. Beta-2 microglobulin (range 0.6-2.4) 4. Serum free light chain kappa 121 ((normal 3.3-19.4). Her bone marrow plasma index was 18%. She had numerous rib/vertebral fractures and radiographic/CT/MRI evidence of multiple myeloma lesions.
My mother refused chemotherapy (Rev/dex). Her concern was side effects and quality of life and a lifelong fear of and true sensitivity to medications (numerous drug allergies) She chose to see a physician at a Center for Integrative Medicine at a state university. This particular doctor sees patients with many issues, not just cancer, and did not presume to cure her multiple myeloma. His recommendations were supplements (fish oil, calcium/vitamin D, cinnamon, to name a few) and a pretty strict gluten-free diet. His goal was to strengthen her so that she could withstand whatever treatment came along. He did suggest that she follow her oncologist recommendations and yet respected her choice to not take Rev/dex. This doctor checks her multiple myeloma labs monthly. As any of you who have been on Rev/dex know, the general standard of care with labs is weekly CBCs while on the med but usually the multiple myeloma markers are not checked until after 3 to 4 months of Rev/dex to see response.
Of note, with only the gluten-free diet and numerous supplements (beyond what the integrative medicine doctor recommended), her borderline anemia and other abnormal labs (including low albumin and abnormal thyroid function) completely normalized. Her hemoglobin and hematocrit have remained normal - no anemia any more. And, her multiple myeloma numbers remained relatively steady.
In September 2010, she ended up in hospital with pain and numerous vertebral fractures. Her M protein and FLC were creeping up. Oncologist again recommended treatment. After 6 days of Rex/dex (including first pulse dose of dex) she was admitted to the hospital with pneumonia. The cancer doctor said her pneumonia was unrelated to Rev/dex, but the pulmonary doctor said, "we really don't know.. it COULD be related to the Rev/dex." After she recovered from that, she went back on Rev/dex for another 6 days again before developing side effects - oncologist told her to stop medicine which she did. Her total nonconsecutive treatment with Rev/dex was 12 days.
After the first six six days of treatment, my mother's multiple myeloma numbers dropped significantly and her beta-2 completely normalized. I actually contacted the maker of Revlimid, Celgene, to see if they had any studies to support this quick of a response. They were very helpful and interested to hear of such a quick response but had no studies to support this that they could discuss with me.
My mother's labs after the next six days of treatment (now a total of only 12 days) showed that ALL of her multiple myeloma markers had normalized: beta-2, serum free light chains, IgG were within normal limits. Her M protein had come down to 0.310 (310) which I believe puts her back into an MGUS category? The only test that has not been repeated for any definitive staging of remission is a bone marrow biopsy.
It was a difficult painful recovery from the pneumonia and multiple vertebral fractures she had in September. She was on morphine 24/7 for about seven months for the pain from the fractures (or maybe bone pain too). To help with the pain, she had radiofrequency ablation at several levels of her spine (this is minimally invasive). She had relief from her back pain and then went through withdrawal from the morphine. That is four months ago, and now she still gets pain, but doesn't even take a Motrin right now.
When my mother saw her oncologist, he was excited about her numbers of course... said he had never seen multiple myeloma numbers so quickly on such a short time on Revlimid/dex. Once he discovered that she did not continue the Rev/dex (even though he had told her to stop it related to side effects), he actually became angry with her and not very nice or professional. It was My Way or the Highway. From everything I have read and believe, every one of us has the right to choose our treatment and to find support. She is hardly the first cancer patient to choose to not take therapy! She will not go back to him.
Needless to say, the Celgene rep did not contact me after I sent them the latest information. Maybe they don't want to run studies to see if some multiple myeloma patients, even stage 3, could respond so quickly and be allowed to experience fewer side effects? Maybe my mother will be one of very few exceptions... I don't know. Like all with multiple myeloma, we await her lab results each month... and are grateful that her pain has been controlled without narcotics... and that she is able to have more activity in her life...
Now that Revlimid is in question related to secondary cancers, it seems (to me) if one does choose Revlimid, it is all that more essential to follow labs even closer? What IF some newly diagnosed multiple myeloma patients could actually respond in record time? and have fewer side effects? what IF the supplements and the diet actually facilitated this?
I apologize for the length and details but hope that someone can find hope in this message and learn something from my mother's experience. Wishing you all well...
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Purple Butterfly - Name: Purple Butterfly
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 70
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
One thing I learned at a recent seminar for multiple myeloma patients and care givers is that some supplements can interfere with proven chemos effectiveness. In particular one glass of green tea can totally negate a treatment of proven to be effective chemo.
As a survivor of sorts, I stick to the tested and approved treatments. Much has been invested in all that has to be done to get these treatments approved, and much of that testing is trials that we as patients put in as much as a year in. This I have done!
Hugh
As a survivor of sorts, I stick to the tested and approved treatments. Much has been invested in all that has to be done to get these treatments approved, and much of that testing is trials that we as patients put in as much as a year in. This I have done!
Hugh
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turbineman - Name: Hugh
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan 2006
- Age at diagnosis: 61
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
no offense, but how can they diagnose your mom as stage III if she had minimal anemia and no organ involvement (ie kidney is fine). Yes her protein was high, but not severely high at diagnosis.
I'm glad her decision not to take chemo is working ok for her, but I just don't think your stage III description is of true stage III disease.
I was diagnosed with stage II and was severely sick, needed blood transfusion, had to be hospitalized. I had some bone lesions and my M spike was double your mom's at diagnosis. The bone marrow biopsy gives an idea of how intense the spread is.
I'm glad her decision not to take chemo is working ok for her, but I just don't think your stage III description is of true stage III disease.
I was diagnosed with stage II and was severely sick, needed blood transfusion, had to be hospitalized. I had some bone lesions and my M spike was double your mom's at diagnosis. The bone marrow biopsy gives an idea of how intense the spread is.
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guest
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
No offense taken. As you may know, there are the two methods of staging, the Salmon-Durie, and the ISS (or PSS?) - and from what we have learned, these stages can be hard to pin down, and every multiple myeloma patient is different. Some with very high numbers may show little bone issues or symptoms, yet some with low numbers may have more symptoms and present very sick. There is no one course that any of us can say is followed.
To clarify: In my original post in this thread, I shared that my mother was given a diagnosis of stage III AND stage II. Her first oncologist said she was stage III - based the multiple vertebral and rib fractures, additional spots in her femur, as well as based on the presence of multiple myeloma on her bone marrow biopsy. There was no end organ damage or kidney failure or issues - but the absence of those things from all that we have learned did not keep her out of a stage III in his opinion.
A second opinion at Ohio State University with a specific multiple myeloma doctor yielded a diagnosis of stage II - related to her beta 2 value (though elevated, this doctor felt it didn't put her in stage IIIi). I discussed the specifics of the stage II versus stage III diagnoses - in the end, this multiple myeloma specialist stated that basically, by some criteria, my mom was indeed stage III (significant bone involvement and bone marrow biopsy) and stage II by other criteria. Somewhere in between.
Once we got over the hurdle of her unrelenting pain from the fractures - achieved with time, physical/occupational therapy, a good bone building regimen, and with radiofrequency ablation finally allowing her get off of the morphine, the focus has now been on watching the multiple myeloma numbers and no more fractures.
As of my writing this today, 03/28/11, my mother's latest multiple myeloma markers remain within normal... though now with what we realize are "normal" fluctuations. From all that we have learned, fluctuations in the multiple myeloma markers will occur in all stages of MGUS, of full blown multiple myeloma, including for those on chemotherapy, on maintenance, etc.
My sharing this is not intended to imply this will work for anyone else... though I sure wish that it would and that there would be more attention paid to it by the medical community. I guess my goal is to impart hope... but from the total lack of response, other than to negate what I share, my guess is that is not what others are taking away from this.
I do hope no one negates or minimizes her experience of remission with minimal chemotherapy and supplements as being due to her not being as bad off as the next. We all know from reading about multiple myeloma that one person may react quickly to chemotherapy while others do not ... and the responses to or lack of responses to conventional treatment or alternative treatment are incredibly varied.
A diagnosis of stage III (or any stage) does not require someone to be manifesting 100% of the criteria - that's just not how multiple myeloma works, from all that I read.
Thanks for your comment.
To clarify: In my original post in this thread, I shared that my mother was given a diagnosis of stage III AND stage II. Her first oncologist said she was stage III - based the multiple vertebral and rib fractures, additional spots in her femur, as well as based on the presence of multiple myeloma on her bone marrow biopsy. There was no end organ damage or kidney failure or issues - but the absence of those things from all that we have learned did not keep her out of a stage III in his opinion.
A second opinion at Ohio State University with a specific multiple myeloma doctor yielded a diagnosis of stage II - related to her beta 2 value (though elevated, this doctor felt it didn't put her in stage IIIi). I discussed the specifics of the stage II versus stage III diagnoses - in the end, this multiple myeloma specialist stated that basically, by some criteria, my mom was indeed stage III (significant bone involvement and bone marrow biopsy) and stage II by other criteria. Somewhere in between.
Once we got over the hurdle of her unrelenting pain from the fractures - achieved with time, physical/occupational therapy, a good bone building regimen, and with radiofrequency ablation finally allowing her get off of the morphine, the focus has now been on watching the multiple myeloma numbers and no more fractures.
As of my writing this today, 03/28/11, my mother's latest multiple myeloma markers remain within normal... though now with what we realize are "normal" fluctuations. From all that we have learned, fluctuations in the multiple myeloma markers will occur in all stages of MGUS, of full blown multiple myeloma, including for those on chemotherapy, on maintenance, etc.
My sharing this is not intended to imply this will work for anyone else... though I sure wish that it would and that there would be more attention paid to it by the medical community. I guess my goal is to impart hope... but from the total lack of response, other than to negate what I share, my guess is that is not what others are taking away from this.
I do hope no one negates or minimizes her experience of remission with minimal chemotherapy and supplements as being due to her not being as bad off as the next. We all know from reading about multiple myeloma that one person may react quickly to chemotherapy while others do not ... and the responses to or lack of responses to conventional treatment or alternative treatment are incredibly varied.
A diagnosis of stage III (or any stage) does not require someone to be manifesting 100% of the criteria - that's just not how multiple myeloma works, from all that I read.
Thanks for your comment.
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Purple.Butterfly
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
I have Multiple Myeloma Stage III. I have end stage kidney failure(stage v), long bone innumerable lytic damage and > 50 % myeloma cells in my bone marrow biopsy. Hemoglobin was 4.0. I ended up in two ER's in kidney failure and pulmonary failure. Both times they were determined to put me on dialysis. They failed to diagnose my myeloma as the reason for the kidney failure. (i had never had any prior kidney problems).(this were big well known hospitals).
I signed out of both hospitals to narrowly avoided being placed on dialysis. Even though I was afraid, I was more afraid to be placed on dialysis.
I finally ended up in a 3rd ER with my intestines hemorrhaging.They took a biopsy of my kidney when showed myeloma and a bone biopsy. I had the choice of what would be called the best of doctors and specialist. I bypassed the ones with the most recent known treatment and choose one who had been in the field a long time. Even though he was legally bound by law to follow what the medical profession said, he also listened to what I wished. I took high doses of dex and Velcade. I briefly took a couple of doses of Revlimid and refused to take any more. Unfortunately I had been eating a "fast food" diet all my life. I did not take supplements; until my diagnosis and I started taking the usual multi and others i would sneak in from all my reading.
I believe if I had been doing this prior maybe I would not have got this myeloma, we will never know.The Velcade-dex brought my very high Kappa light chains down quickly. I had to really beg to be taken off Velcade. Yes I did have lots of burning in my feet and hands. I am in Remission from the myeloma. I still take dex, and my doctor will not agree to take me off. I really want off but am afraid. Yes, I am still in stage 5, kidney failure. And, no, I am not on dialysis. I had to just not see the kidney doctors to avoid dialysis.
I am not recommending any treatments here, I am only sharing my experience. And, I am putting 100% of my support to the writer to who this is in response to as I agree with her about the FDA. Our laws and and the FDA make medical doctors follow a very narrow treatment plan or they can have the states file a "felony" against them as they are going outside the medical community plan. I know this as I was a registered nurse for over 40 years. It was easier for me to say NO even though I was afraid. It is sad that our treatment for cancer is to be given "poison" to heal us; which often causes other cancers.
This is the first time I I have written on a forum and probably never will again; as they too are supported $$ by people with conflict of interest. I do not even support the cancer society. Many people are "sheep" in our society. And when we are sick we are to afraid...as I still am. But, I sure support "purple lady" and she and her mom are special people.
I signed out of both hospitals to narrowly avoided being placed on dialysis. Even though I was afraid, I was more afraid to be placed on dialysis.
I finally ended up in a 3rd ER with my intestines hemorrhaging.They took a biopsy of my kidney when showed myeloma and a bone biopsy. I had the choice of what would be called the best of doctors and specialist. I bypassed the ones with the most recent known treatment and choose one who had been in the field a long time. Even though he was legally bound by law to follow what the medical profession said, he also listened to what I wished. I took high doses of dex and Velcade. I briefly took a couple of doses of Revlimid and refused to take any more. Unfortunately I had been eating a "fast food" diet all my life. I did not take supplements; until my diagnosis and I started taking the usual multi and others i would sneak in from all my reading.
I believe if I had been doing this prior maybe I would not have got this myeloma, we will never know.The Velcade-dex brought my very high Kappa light chains down quickly. I had to really beg to be taken off Velcade. Yes I did have lots of burning in my feet and hands. I am in Remission from the myeloma. I still take dex, and my doctor will not agree to take me off. I really want off but am afraid. Yes, I am still in stage 5, kidney failure. And, no, I am not on dialysis. I had to just not see the kidney doctors to avoid dialysis.
I am not recommending any treatments here, I am only sharing my experience. And, I am putting 100% of my support to the writer to who this is in response to as I agree with her about the FDA. Our laws and and the FDA make medical doctors follow a very narrow treatment plan or they can have the states file a "felony" against them as they are going outside the medical community plan. I know this as I was a registered nurse for over 40 years. It was easier for me to say NO even though I was afraid. It is sad that our treatment for cancer is to be given "poison" to heal us; which often causes other cancers.
This is the first time I I have written on a forum and probably never will again; as they too are supported $$ by people with conflict of interest. I do not even support the cancer society. Many people are "sheep" in our society. And when we are sick we are to afraid...as I still am. But, I sure support "purple lady" and she and her mom are special people.
Re: Recommendation by doctor to stop supplements w/ Rev/Dex?
I just now saw this post... almost a year later. "Injured Kidney" I hope you are doing well? And, thank you very much for your reply and your support and "getting" my comments about the FDA, etc. I applaud you for posting your thoughts and do so appreciate you support me in my post as well as my mom's choices. We all have a right to our choices. .
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
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