I'm a newbie. My soul-mate (Laura) was diagnosed with stage 1 multiple myeloma 2 months ago. We have seen 5 doctors in the central Florida area. Of the CRAB she only has B, a bone lesion on her hip, which she found by accident. She has no pain, no symptoms except her blood count from the biopsy.
All the doctors demanded we start chemo asap except the one at Shands Hospital in Gainesville, FL. He said we could wait 30 days.
Two weeks ago we went to an open house at the Hippocrates Health Institute in Palm Beach FL, which was very impressive! They preach changing your lifestyle by getting your body in equilibrium with a raw food diet, wheat grass and additional life changes. They don't cure cancer. They promote a holistic lifestyle, then your own body cures the cancer.
We have drastically changed our eating habits including drinking wheat grass daily. The issue: The doctors say do it their way, chemo then stem cell transplantation! The others say change our lifestyle and eating habits because the chemo/stem cell transplant is worse than the disease.
We spoke with someone this morning who was diagnosed with myeloma in 2007. He did 6 months on chemo, readying for the stem cell transplant . He told us he became so ill from the chemo, he changed direction and went to holistic living and now is multiple myeloma free!
My question is: do we wait and live holistic or move froward with the chemo then the stem cell transplant?
Any comments are appreciated; we don't know what to do.
Forums
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GimmyTruth - Name: Mark
- Who do you know with myeloma?: Girlfriend
- When were you/they diagnosed?: Orlando FL
Re: What do we do: chemo or delay?
Hi there,
Why not do both? Don't get to hung up on the 'chemo' thing.
I'm not that ill; still down the beach with the dog, still out at restaurants. Sure, I can get tired some days and I am so bloody bloated (also must be quite vain). But I won't loose my hair till after Xmas, just refuse to sweat it. Transplant happening in January. And there are so many variations to this.
Also horror stories are everywhere. Your friend's miracle is exactly that. If it was even a common miracle, we would all know of someone.
Try both, if you can drink wheat grass daily!! You can do anything.
Cheers,
Sharon
Why not do both? Don't get to hung up on the 'chemo' thing.
I'm not that ill; still down the beach with the dog, still out at restaurants. Sure, I can get tired some days and I am so bloody bloated (also must be quite vain). But I won't loose my hair till after Xmas, just refuse to sweat it. Transplant happening in January. And there are so many variations to this.
Also horror stories are everywhere. Your friend's miracle is exactly that. If it was even a common miracle, we would all know of someone.
Try both, if you can drink wheat grass daily!! You can do anything.
Cheers,
Sharon
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: What do we do: chemo or delay?
I agree I think your friend may be a miracle. My cousin had brain cancer and her daughter (who is a doctor) pushed her to do the holistic approach and ignored the doctor's advice to do chemo. By the time they realized the holistic approach wasn't working, it was too late even after she started chemo. This was just my family's experience though with a different cancer.
Re: What do we do: chemo or delay?
While I do believe that eating a healthy diet and making life style changes such as removing stress can help improve one’s health (cancer or not) and help you better endure the chemotherapy and chemo treatments used to fight cancer, I would not be lured into the claims of those promoting that they can cure cancer with diet and life style changes and then your body will cure you cancer on its own, especially with myeloma. It is a compelling message that seems to offer an easy way out of the difficult road ahead, who wouldn’t want it to be true, but is it?
First, I hear these anecdotal stories all the time about somebody being cured by alternative medicine approaches but they never seem to pan out under close scrutiny. In the three years I have had myeloma, I have yet to encounter personally or seen specifics on any being supposedly a cure in this manner.
Keep in mind that the man you spoke with did 6 months of chemo treatment in preparation for a stem cell transplant. It is not like he skipped the whole “conventional” medicine approach and went straight to the “alternative” medicine approach and is now “myeloma free”. Six months of induction therapy is a lot, completing the whole initial treatment cycle.
I was only treated for a little over 4 months before my stem cell transplant and I achieved a very good partial remission before my stem cell transplant after being diagnosed with Stage III.
There is a well-respected myeloma specialist, Dr. Berenson, who no longer does transplants and treats patients similar to what that man had done and with good results. There are many others who do not do transplants for various reasons and also have had good results.
That man’s case in no way is any evidence that the man’s “change of direction” had anything to do with his being “myeloma free” today. He was heavily treated with “conventional” medicine treatments for myeloma and then is ignoring that or pretending it did not happen or was not effective. He very well could have been put into remission from 2007 to date just from the 6 months of treatment he did.
Also what does “myeloma free” mean? Is he under the care of a physician and getting regular lab work done to monitor for myeloma? Or is he assuming he is myeloma free just because he is feeling good? You can have advanced myeloma and still seemingly feel good, I know this from personal experience.
Also there are a lot of these practitioners that do not use lab testing to monitor cancer but have come up with their own unproven methods, such has hair sample analysis, that only they claim to understand, so they can get the results they want and control the information they provide to you. They do not want you going to an independent lab for testing.
There was a woman who was promoting a holistic approach here on the Beacon and claimed great results. Inconsistency in some of the things she was saying led to the revelation that she had completed three months of “conventional treatment” before going holistic and she was trying to hide that fact and attribute everything to her diet therapy approach.
First, I hear these anecdotal stories all the time about somebody being cured by alternative medicine approaches but they never seem to pan out under close scrutiny. In the three years I have had myeloma, I have yet to encounter personally or seen specifics on any being supposedly a cure in this manner.
Keep in mind that the man you spoke with did 6 months of chemo treatment in preparation for a stem cell transplant. It is not like he skipped the whole “conventional” medicine approach and went straight to the “alternative” medicine approach and is now “myeloma free”. Six months of induction therapy is a lot, completing the whole initial treatment cycle.
I was only treated for a little over 4 months before my stem cell transplant and I achieved a very good partial remission before my stem cell transplant after being diagnosed with Stage III.
There is a well-respected myeloma specialist, Dr. Berenson, who no longer does transplants and treats patients similar to what that man had done and with good results. There are many others who do not do transplants for various reasons and also have had good results.
That man’s case in no way is any evidence that the man’s “change of direction” had anything to do with his being “myeloma free” today. He was heavily treated with “conventional” medicine treatments for myeloma and then is ignoring that or pretending it did not happen or was not effective. He very well could have been put into remission from 2007 to date just from the 6 months of treatment he did.
Also what does “myeloma free” mean? Is he under the care of a physician and getting regular lab work done to monitor for myeloma? Or is he assuming he is myeloma free just because he is feeling good? You can have advanced myeloma and still seemingly feel good, I know this from personal experience.
Also there are a lot of these practitioners that do not use lab testing to monitor cancer but have come up with their own unproven methods, such has hair sample analysis, that only they claim to understand, so they can get the results they want and control the information they provide to you. They do not want you going to an independent lab for testing.
There was a woman who was promoting a holistic approach here on the Beacon and claimed great results. Inconsistency in some of the things she was saying led to the revelation that she had completed three months of “conventional treatment” before going holistic and she was trying to hide that fact and attribute everything to her diet therapy approach.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What do we do: chemo or delay?
If 100% of the 5 doctors you saw said chemo/transplant, I think you should listen to sound advice backed up by scientific data. After she's in remission, then go the holistic approach. I've never read/ heard of anyone forgoing all treatment for myeloma, going holistic and entering remission. Thousands of people yearly experience remissions from chemo and/or stem cell transplants.
Good luck with your decisions!
Good luck with your decisions!
Re: What do we do: chemo or delay?
When I was diagnosed 2 1/2 yrs ago, I was told by two oncologist, one a myeloma specialist, that I had to start chemo. I had anemia and a bone lesion with 40% malignant plasma cells and a genetic study showed moderate risk of progression.
I was not going to jump into treatment until I got educated about the disease and treatment options. I saw Dr. Berenson in LA, who does not believe in SCT, and followed his suggestions.
I started with 3 months of Zometa only. After three months, when the lesion showed advancement, he started me on chemo. I responded well and have been in stringent complete remission now for 16 months. I felt great before, during, and now with maintenance chemo. I never slowed down and I wouldn't know there was anything wrong before diagnosis. I was not comfortable or willing to have a stem cell transplant when I felt so good, and getting Dr. B's treatment protocol hit home for me.
You must believe in the approach you choose to take. For me, following a holistic only approach would not leave me comfortable, same feeling I got if I was to follow the transplant approach. We each have to make our own choices. Do your research, seek out studies that are double blind and reproducible.
I found the problem with the holistic approach is most of what is being touted is anecdotal. As one poster said, you can always do holistic with conventional rather than just holistic. I feared chemo but had absolutely no problem and remain on maintenance with no issues.
Good luck.
I was not going to jump into treatment until I got educated about the disease and treatment options. I saw Dr. Berenson in LA, who does not believe in SCT, and followed his suggestions.
I started with 3 months of Zometa only. After three months, when the lesion showed advancement, he started me on chemo. I responded well and have been in stringent complete remission now for 16 months. I felt great before, during, and now with maintenance chemo. I never slowed down and I wouldn't know there was anything wrong before diagnosis. I was not comfortable or willing to have a stem cell transplant when I felt so good, and getting Dr. B's treatment protocol hit home for me.
You must believe in the approach you choose to take. For me, following a holistic only approach would not leave me comfortable, same feeling I got if I was to follow the transplant approach. We each have to make our own choices. Do your research, seek out studies that are double blind and reproducible.
I found the problem with the holistic approach is most of what is being touted is anecdotal. As one poster said, you can always do holistic with conventional rather than just holistic. I feared chemo but had absolutely no problem and remain on maintenance with no issues.
Good luck.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: What do we do: chemo or delay?
One more point to add, I do not know who is telling you that:
“The others say change our lifestyle and eating habits because the chemo / stem cell transplant is worse than the disease.”
Really? What do they know? Have they been through it? I do not believe that and I have done chemo and SCT.
Much is often said on forums like the Beacon about the side effects of the treatments, but not much is shared about what it is like to die from myeloma. This can leave some people with the false impression that the treatments are worse than the disease because that is mostly what we read and hear about.
Dying from myeloma is not a very pleasant thing. Often there will be severe and painful bone damage. Severe anemia sets in with all the resulting complications. As the immune system starts to fail, infections set in that cannot be stopped. I believe the most common cause of death is typically pneumonia that results in cardiac arrest and from low oxygen as the lungs start to fail and you are on oxygen gasping for air. That is a lot more unpleasant that my experience with myeloma chemo treatment.
Read the previous poster's experience with Dr. Berenson. Does that sound like something awful? Part of the allure of the proponents of alternative medicine is the claim they that their approaches can beat your cancer with minimal impact and inconvenience to your quality of life and you can beat this little problem you have and still go about your life as just as before. Who wouldn’t want that to be true, but is it? How did that work out for Steve Jobs?
“The others say change our lifestyle and eating habits because the chemo / stem cell transplant is worse than the disease.”
Really? What do they know? Have they been through it? I do not believe that and I have done chemo and SCT.
Much is often said on forums like the Beacon about the side effects of the treatments, but not much is shared about what it is like to die from myeloma. This can leave some people with the false impression that the treatments are worse than the disease because that is mostly what we read and hear about.
Dying from myeloma is not a very pleasant thing. Often there will be severe and painful bone damage. Severe anemia sets in with all the resulting complications. As the immune system starts to fail, infections set in that cannot be stopped. I believe the most common cause of death is typically pneumonia that results in cardiac arrest and from low oxygen as the lungs start to fail and you are on oxygen gasping for air. That is a lot more unpleasant that my experience with myeloma chemo treatment.
Read the previous poster's experience with Dr. Berenson. Does that sound like something awful? Part of the allure of the proponents of alternative medicine is the claim they that their approaches can beat your cancer with minimal impact and inconvenience to your quality of life and you can beat this little problem you have and still go about your life as just as before. Who wouldn’t want that to be true, but is it? How did that work out for Steve Jobs?
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What do we do: chemo or delay?
To give you some perspective on the person you talked to that was supposedly multiple myeloma free after 6 rounds of chemo ... after I was diagnosed in June 2013, I had 5 rounds of chemo. After the 3rd round, my m-spike was zero, and after the 4th round, my m-spike was non detectable. When I was diagnosed, I had 80% bone marrow involvement. After 5 rounds of chemo, I had 0% bone marrow involvement.
So if you compared me to that person who is supposedly multiple myeloma free, I could probably say the same thing about myself ... that I am multiple myeloma free. And I didn't change my diet that much other than reducing the amount of sugar in my diet and attempting to eat a little "more healthy", but I didn't make any drastic changes. Also, I handled the 5 rounds of chemo quite easily.
Do I consider myself multiple myeloma free? Absolutely not. I figure I will eventually relapse as do most people with multiple myeloma. I'm not going to rely on diet alone to control this disease. I eventually went ahead and had a stem cell transplant and am now on maintenance therapy. A perfectly good alternative is to NOT have the stem cell transplant – that would be your decision. My logic for having a stem cell transplant was to give myself the best chance of a long term remission. And, other than a few minor side effects from the maintenance therapy, I feel way better than I did before I was diagnosed. Before I was diagnosed, I was having several headaches a week. I am now pretty much headache free. That alone is a huge improvement in my quality of life.
So my advice is to combine a healthy / holistic diet with treatment. I wouldn't rely on diet alone because, if it doesn't work, the multiple myeloma can continue to damage your body.
So if you compared me to that person who is supposedly multiple myeloma free, I could probably say the same thing about myself ... that I am multiple myeloma free. And I didn't change my diet that much other than reducing the amount of sugar in my diet and attempting to eat a little "more healthy", but I didn't make any drastic changes. Also, I handled the 5 rounds of chemo quite easily.
Do I consider myself multiple myeloma free? Absolutely not. I figure I will eventually relapse as do most people with multiple myeloma. I'm not going to rely on diet alone to control this disease. I eventually went ahead and had a stem cell transplant and am now on maintenance therapy. A perfectly good alternative is to NOT have the stem cell transplant – that would be your decision. My logic for having a stem cell transplant was to give myself the best chance of a long term remission. And, other than a few minor side effects from the maintenance therapy, I feel way better than I did before I was diagnosed. Before I was diagnosed, I was having several headaches a week. I am now pretty much headache free. That alone is a huge improvement in my quality of life.
So my advice is to combine a healthy / holistic diet with treatment. I wouldn't rely on diet alone because, if it doesn't work, the multiple myeloma can continue to damage your body.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: What do we do: chemo or delay?
Treating now at stage 1 with chemo to me is preferable than to treat at stage 3. My husband looked and felt great, however he was diagnosed at stage 3. Oncologist said she never saw someone who was as anemic as my husband who had no other symptoms. So it is possible to progress to a more dangerous stage and not even realize it.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: What do we do: chemo or delay?
Hi GimmyTruth,
Just one thing to add to what other folks have said. It's implied in what several folks have said, but I want to be explicit about it.
Laura should be treated by a myeloma specialist, not a regular hematologist/oncologist. Myeloma is a complex disease and there are rapid advances being made in its treatment. So you want to be treated by someone who sees lots of myeloma patients and who is up on the latest advances.
For a list of myeloma treatment centers in FL, see https://myelomabeacon.org/resources/treatment-centers/#Florida.
Best wishes to you and Laura.
Mike
Just one thing to add to what other folks have said. It's implied in what several folks have said, but I want to be explicit about it.
Laura should be treated by a myeloma specialist, not a regular hematologist/oncologist. Myeloma is a complex disease and there are rapid advances being made in its treatment. So you want to be treated by someone who sees lots of myeloma patients and who is up on the latest advances.
For a list of myeloma treatment centers in FL, see https://myelomabeacon.org/resources/treatment-centers/#Florida.
Best wishes to you and Laura.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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