Well, I am impressed the guy just after 6 months of chemo is doing well 7 years later.
I don't believe diet is a cure, don't get me wrong. But even if some one did chemo for awhile and they are still alive 7 or more years I want to know what they are doing.
They are dismissed because they did chemo for awhile? There are people doing chemo, stem cell transplantation, maintenance, and dying in 5 years or less.
Why are some people living a long time? I think it would be great to research what their diet is, what supplements they are taking if any, are they handling stress better than normal? They shouldn't be dismissed.
I never have hidden the fact I have taken Rev at 10 mg and some prednisone. But I am happy to be still alive 2 years later with a very aggressive myeloma. I could have done the heavy chemo, stem cell tranplantation, and maintenance and be dead now. I have high risk.
There is no research what people are doing different that are living 10 or more years. And there are people that have never taken drugs and living 10 or more years. They are out there.
I for one would love to see some research what these people are doing to be alive that long and doing well without a stem cell transplant or maintenance and some never have taken any drugs.
Forums
Re: What do we do: chemo or delay?
Hi GimmyTruth,
My husband was diagnosed in 2012 with no symptoms. The only reason we found out was because we were renewing our life insurance. Our diagnosing oncologist (not a myeloma specialist) wanted to start chemo and do a stem cell transplant right away and never discussed any other options. When we brought up alternative treatments, he told us in a snarky tone, "Myeloma can’t be cured with pomegranate juice." (We never talked about pomegranate juice to begin with but we suddenly knew how he felt about alternative treatment). In any case, we were completely freaked out by the idea of chemo/SCT and so, for a year and half, we embarked on an alternative protocol that included diet and lifestyle changes under the care of several alternative practitioners.
During that year and half, my husband's myeloma became very active although he still didn't have any symptoms. About 15 months into it, he ended up with three bone fractures at T-12, L-1 and L-2. In addition, he had several bone lesions in his arms, legs and pelvis. He couldn't walk and was wheelchair bound and we finally sought traditional medical treatment with a myeloma specialist (who doesn't recommend SCT). At that time, my husband was also in near kidney failure. The doc said he hadn't seen those high numbers in years. My husband immediately began treatment (Velcade, Doxil, Dex, Zometa and a blood transfusion). On the day of initial treatment, word got around the office that we were "alternative people" and I will never forget what one of the staffers told me in a very polite and compassionate tone. He said, "You know, I'm all for alternative therapies. In fact, I'm a yoga instructor, and there are some cancers that can be treated alternatively but myeloma isn't one of them."
Do we regret doing the alternative protocol? My answer is no, because we always would've wondered if we could heal the cancer ourselves if we hadn't. Of course, I would have liked to prevent the pain and suffering my husband went through and I wish he had agreed to get traditional treatment sooner (he wasn’t emotionally ready but that’s another story altogether
). All this being said, I definitely agree with the previous post from Melanie that treatment at stage 1 is better than stage 3 when more damage has been done. And I also concur that Laura should see a myeloma specialist- preferably one that you really like and respect- no matter what treatment you choose to do.
I do feel the alternative protocol was extremely helpful in detoxing my husband’s lymphatic system and getting his gut bacteria super healthy. He doesn’t suffer any side effects as related to constipation, diarrhea etc. from treatment. My husband is currently in a clinical trial with a promising new drug and is responding well. In fact there are two people in the trial who are in remission. We are still adhering to the diet and lifestyle changes of the alternative practitioners with a few tweaks here and there.
Best,
Jeannie
My husband was diagnosed in 2012 with no symptoms. The only reason we found out was because we were renewing our life insurance. Our diagnosing oncologist (not a myeloma specialist) wanted to start chemo and do a stem cell transplant right away and never discussed any other options. When we brought up alternative treatments, he told us in a snarky tone, "Myeloma can’t be cured with pomegranate juice." (We never talked about pomegranate juice to begin with but we suddenly knew how he felt about alternative treatment). In any case, we were completely freaked out by the idea of chemo/SCT and so, for a year and half, we embarked on an alternative protocol that included diet and lifestyle changes under the care of several alternative practitioners.
During that year and half, my husband's myeloma became very active although he still didn't have any symptoms. About 15 months into it, he ended up with three bone fractures at T-12, L-1 and L-2. In addition, he had several bone lesions in his arms, legs and pelvis. He couldn't walk and was wheelchair bound and we finally sought traditional medical treatment with a myeloma specialist (who doesn't recommend SCT). At that time, my husband was also in near kidney failure. The doc said he hadn't seen those high numbers in years. My husband immediately began treatment (Velcade, Doxil, Dex, Zometa and a blood transfusion). On the day of initial treatment, word got around the office that we were "alternative people" and I will never forget what one of the staffers told me in a very polite and compassionate tone. He said, "You know, I'm all for alternative therapies. In fact, I'm a yoga instructor, and there are some cancers that can be treated alternatively but myeloma isn't one of them."
Do we regret doing the alternative protocol? My answer is no, because we always would've wondered if we could heal the cancer ourselves if we hadn't. Of course, I would have liked to prevent the pain and suffering my husband went through and I wish he had agreed to get traditional treatment sooner (he wasn’t emotionally ready but that’s another story altogether
). All this being said, I definitely agree with the previous post from Melanie that treatment at stage 1 is better than stage 3 when more damage has been done. And I also concur that Laura should see a myeloma specialist- preferably one that you really like and respect- no matter what treatment you choose to do.I do feel the alternative protocol was extremely helpful in detoxing my husband’s lymphatic system and getting his gut bacteria super healthy. He doesn’t suffer any side effects as related to constipation, diarrhea etc. from treatment. My husband is currently in a clinical trial with a promising new drug and is responding well. In fact there are two people in the trial who are in remission. We are still adhering to the diet and lifestyle changes of the alternative practitioners with a few tweaks here and there.
Best,
Jeannie
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: What do we do: chemo or delay?
Hi Gimme Truth,
This is not something I ever thought I would be posting, but I have just mentioned under the Thyroid thread that my father died of multiple myeloma in 1975. In support of Eric Hofacket's posting I want to confirm that what he described happened verbatim to my dad. There were very few options available in those years and he finally succumbed to pneumonia after protracted illness and unbearable pain (which in hindsight I don't understand as he was given morphine for pain relief). It was a very traumatic experience for all of us ( I was 20 and the eldest of 4 children)
We are fortunate today that we have many treatment options available to us and I honour all the scientists working so hard to bring us better solutions. We have a duty to make informed decisions about our treatments and I wish you all the best for making yours.
This is not something I ever thought I would be posting, but I have just mentioned under the Thyroid thread that my father died of multiple myeloma in 1975. In support of Eric Hofacket's posting I want to confirm that what he described happened verbatim to my dad. There were very few options available in those years and he finally succumbed to pneumonia after protracted illness and unbearable pain (which in hindsight I don't understand as he was given morphine for pain relief). It was a very traumatic experience for all of us ( I was 20 and the eldest of 4 children)
We are fortunate today that we have many treatment options available to us and I honour all the scientists working so hard to bring us better solutions. We have a duty to make informed decisions about our treatments and I wish you all the best for making yours.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: What do we do: chemo or delay?
As much as I strongly encourage you to get exercise and eat well, there is NO proof that any of these lifestyle changes are going to be the impetus for remission and hopefully, someday, cure. Science is going to do that. Remember the tragedies of people like Steve Jobs and Bob Marley, who thought alternative medicine was THE answer as opposed to a piece of the tool box.
Your best chance of long term survival is to find a myeloma specialist who you trust and, after long conversations about treatment approaches and after you have done enough research to make you sick, choose how you and your doctor are going to attack this disease.
There are several approaches — stem cell transplant, no stem cell transplant, only do the minimum to control, or attack with the whole tool box with hopes of a cure. So much changes every day, the specialist is the key, and also exercising some restraint with all of the people who will send you magic cures. Nothing about this is magic. It is science, and some of the best in the world are working at trying to cure this, or at least extend this disease NOW!!
Good luck in many ways; it's not as bad as it seems and it's getting better. Three years now for me, and I work 60 hours a week, travel a lot, and plan on starting a family soon.
YOU CAN'T STOP LIVING!
Your best chance of long term survival is to find a myeloma specialist who you trust and, after long conversations about treatment approaches and after you have done enough research to make you sick, choose how you and your doctor are going to attack this disease.
There are several approaches — stem cell transplant, no stem cell transplant, only do the minimum to control, or attack with the whole tool box with hopes of a cure. So much changes every day, the specialist is the key, and also exercising some restraint with all of the people who will send you magic cures. Nothing about this is magic. It is science, and some of the best in the world are working at trying to cure this, or at least extend this disease NOW!!
Good luck in many ways; it's not as bad as it seems and it's getting better. Three years now for me, and I work 60 hours a week, travel a lot, and plan on starting a family soon.
YOU CAN'T STOP LIVING!
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bluemountain
Re: What do we do: chemo or delay?
Hello.
Each of us handles chemo differently, so listening to horror stories from others doesn't help you make a decision. For me, there were minor issues (my toes tingled), but that is in the past and I feel wonderful. I too had Stage 1 but decided to do an ASCT since I was strong and healthy.
I understand that the idea of chemo and transplant sounds terrifying, but they are our best options for fighting this disease. No treatment initially will mean the disease will continue to progress and cause more damage to the body and will lead to a higher staging.
My input then is to see a myeloma specialist and follow the advice they recommend. Don't give this thing time to get the upper hand.
Enjoy the new diet and know that you have my support regardless of your decision.
Becky
Each of us handles chemo differently, so listening to horror stories from others doesn't help you make a decision. For me, there were minor issues (my toes tingled), but that is in the past and I feel wonderful. I too had Stage 1 but decided to do an ASCT since I was strong and healthy.
I understand that the idea of chemo and transplant sounds terrifying, but they are our best options for fighting this disease. No treatment initially will mean the disease will continue to progress and cause more damage to the body and will lead to a higher staging.
My input then is to see a myeloma specialist and follow the advice they recommend. Don't give this thing time to get the upper hand.
Enjoy the new diet and know that you have my support regardless of your decision.
Becky
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lattecat - When were you/they diagnosed?: 2010
- Age at diagnosis: 54
Re: What do we do: chemo or delay?
I also urge you to do both approaches. The healthy diet and other lifestyle changes will help offset the medical treatment side effects.
I was 59 when diagnosed with 2 spinal lesions in 2006 and I immediately did 4 rounds of induction chemo and then an auto SCT. I was in complete remission with no treatment at all for 4 years, but I made some lifestyle changes related to diet, exercise, and stress reduction during that whole post diagnosis period. For the past 2 years I've been on low-dose chemo with no impact on my quality of life, which includes daily swimming along with biking, kayaking, and lots of other physical activities.
The most important thing is that I would do the chemo/SCT again in a heart beat. It wasn't easy, but it was definitely worth it. In fact, I have enough stem cells harvested and frozen 6 years ago to undergo a 2nd ASCT if needed in the future.
Everyone's experience with this disease and treatment is different. Yes, there are outliers on both ends of the spectrum, but most of us fall somewhere in the middle. Don't gamble – early treatment can keep your myeloma from taking over your life!
I was 59 when diagnosed with 2 spinal lesions in 2006 and I immediately did 4 rounds of induction chemo and then an auto SCT. I was in complete remission with no treatment at all for 4 years, but I made some lifestyle changes related to diet, exercise, and stress reduction during that whole post diagnosis period. For the past 2 years I've been on low-dose chemo with no impact on my quality of life, which includes daily swimming along with biking, kayaking, and lots of other physical activities.
The most important thing is that I would do the chemo/SCT again in a heart beat. It wasn't easy, but it was definitely worth it. In fact, I have enough stem cells harvested and frozen 6 years ago to undergo a 2nd ASCT if needed in the future.
Everyone's experience with this disease and treatment is different. Yes, there are outliers on both ends of the spectrum, but most of us fall somewhere in the middle. Don't gamble – early treatment can keep your myeloma from taking over your life!
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Bev Baccelli
Re: What do we do: chemo or delay?
Start treatment ASAP! There is no cure for multiple myeloma. However, you can slow it down through treatment. Steve Jobs took the approach of changing lifestyle and look how well that went for him. If Steve had received conventional treatment, he most likely would be alive today.
Changing you life style and eating habits after decades of life is too little too late. Go ahead and improve your eating habits, but expect any improvements from that change to take years.
Changing you life style and eating habits after decades of life is too little too late. Go ahead and improve your eating habits, but expect any improvements from that change to take years.
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Joneman
Re: What do we do: chemo or delay?
See a myeloma specialist! See a myeloma specialist! See a myeloma specialist!
There are so many variables within this disease, and so many different responses to the available treatments, that without a specialist you are simply shooting in the dark with anecdotal evidence, hoping you hit something. Is that a chance you're willing to take?
There are so many variables within this disease, and so many different responses to the available treatments, that without a specialist you are simply shooting in the dark with anecdotal evidence, hoping you hit something. Is that a chance you're willing to take?
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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: What do we do: chemo or delay?
If you are unsure about treatment, by all means get a second, or even third, opinion. But do NOT go down the alternative, snake oil salesman route. The multiple myeloma is damaging her organs, and the longer it is left untreated, the more damage will be done.
I have just gone from being smoldering (been smoldering for 4 years) to active. I will be starting treatment in the next fortnight. I will not hesitate. I want life with quality and longevity. Stay with the proven science, and all the best.
I have just gone from being smoldering (been smoldering for 4 years) to active. I will be starting treatment in the next fortnight. I will not hesitate. I want life with quality and longevity. Stay with the proven science, and all the best.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: What do we do: chemo or delay?
AND - each person's myeloma is idiosyncratic. I am fortunate that I am not considered high risk, as in there is a darn good chance that treatment will have a positive effect. I have had chemo before (for breast cancer). It's really not that bad. 
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
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