hello all - what a christmas season. how many of you go thru so much - holiday. who cares? my brother (diagnosed in august 2013) had on 24th dec an image guided biopsie with an unclear outcome to us: inconclusive results. from the heavy pain he's going thru, thyroid cancer also (left gland taken away on dec 10th, right to follow in due time) they are currently shooting for multiple myeloma, wanting to start chemo tomorrow (Velcade, cytoxan, dex) and possibly later stem cell transplant.
i can hear from my brother, 50 year old father of 4 and 7 year old girls, that he's in fear, in pain just as bad as in august/ while diagnosed and his searching for any option.
any input highly appreciated! any experience with anything alternative?
he's started with acupuncture and responding quite well - his acupuncturist is suggesting a diet to support: does anyone have experience with Johanna Budwig diet, which is cottage cheese mixed with flax seed oil? Do these protocols help / support the otherwise conservative medicine such as chemo?
heike
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Re: Alternative treatments / ideas?
I have spoken with a nutritionist RN who explained that the Budwig study, when originally done, did not use what we know as cottage cheese. They used quark , a whey cheese, found in Europe, similar to, but not the same as cottage cheese . When they attempted to duplicate the study in this country, using cottage cheese, it did not prove effective in eliminating or stopping cancer.
The nutritionist recommended a healthy diet consisting of 1/2 fruits and veggies 1/4 protein mostly in the form of beans, eggs, etc and a little meat and 1/4 whole grains, plus a little of the healthy oils and a tiny bit of dairy if desired. She emphasized eating healthy but being able to enjoy what you eat and NOT to go to extremes where your lose the pleasure for eating. I personally feel exercise is vital as well as a positive attitude I've been in remission for 6 months and am now on a maintenance chemo protocol. I've felt well throughout the process. I also do acupuncture, meditation and yoga.
Good luck to you and your bother. Please keep in mind, when our friends and family hear we have cancer, they want to be helpful and we get inundated with their ideas and the miracle cures they've read about. Be sensitive to your brother's desires and let him direct his own path.
Moderator's Note:
Wikipedia has a detailed article on what exactly "quark" is and how it compares to other dairy products:
http://en.wikipedia.org/wiki/Quark_(dairy_product)
The nutritionist recommended a healthy diet consisting of 1/2 fruits and veggies 1/4 protein mostly in the form of beans, eggs, etc and a little meat and 1/4 whole grains, plus a little of the healthy oils and a tiny bit of dairy if desired. She emphasized eating healthy but being able to enjoy what you eat and NOT to go to extremes where your lose the pleasure for eating. I personally feel exercise is vital as well as a positive attitude I've been in remission for 6 months and am now on a maintenance chemo protocol. I've felt well throughout the process. I also do acupuncture, meditation and yoga.
Good luck to you and your bother. Please keep in mind, when our friends and family hear we have cancer, they want to be helpful and we get inundated with their ideas and the miracle cures they've read about. Be sensitive to your brother's desires and let him direct his own path.
Moderator's Note:
Wikipedia has a detailed article on what exactly "quark" is and how it compares to other dairy products:
http://en.wikipedia.org/wiki/Quark_(dairy_product)
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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: Alternative treatments / ideas?
thank you so much, Tori. that speaks to me as it states all i'm experiencing myself. he seems to be so desperate and seems to be ready to pretty much try out everything. and i'm scared that he's getting too weak over that. but it seems to be a highly inidivdual journey and learning process.
i wish you all the best - happiness for the new year soon upcoming!
i wish you all the best - happiness for the new year soon upcoming!
Re: Alternative treatments / ideas?
Heike,
I would second Tori’s advice based on my own experience with myeloma. I see articles and postings all the time about alternative “cures” and medicine to treat cancers but people who supposedly have actually had success with this approach seem to be extremely scarce. I have never met one. I can say Velcade and Dex worked extremely well on my myeloma and completely eliminated the severe back and rib pain. But these drugs overtime are hard on the body and like Tori said I believe eating as healthy and diet as possible, the kind that doctors and nutrionist have been saying we all should be doing regardless if we have cancer or not, it really important to do while on chemotherapy and recovering from chemotherapy. I feel it is not the time to experiment with esoteric diets with dubious value. I know eating right can be hard to do, in my experience I lost 50lbs and was underweight. I had trouble eating anything. Food lost its taste and I would throw up if I tried to force myself to eat, any calorie was a good calorie. I did recover fully over a few months after I stopped chemo and using opiate drugs.
I also second Tori’s advice about trying to exercise and stay active as possible to maintain your strength as long as you can. It helped me hold off the wasting of the body for a while when I was on Velcade and Dex until I was able to stop treatment with those drugs and recover. I found that exercising also helped fight off depression and took my mind of my problems for a while. I believe trying to lead as normal a life as possible, or remembering what a normal life used to be like and setting a goal to get back to that, and not building your whole existence around myeloma is really important to maintain mental health and get through this. Again, this can be hard to do at time, especially if you are in the hospital.
If acupuncture helps to relieve pain, I say use that as much as you can. I never tried it but I did use a lot of morphine and Dialudid for neuropathy and I can say that long term use of those drugs brings on a set of new problems so if acupuncture works go with that first. I found swimming helped relieve my pain better than any drug but it only lasted while I was on the water and eventually I became too weak to get myself to the pool very often.
Hang in there, if things go well for your brother you may find that recovery after treatment is over can come surprisingly quick. When I was in the hospital for my stem cell transplant and could barely walk four laps around the floor, I never imagined that in just three months I would be doing 25 to 50 mile rides on my bike again and even doing some careful skiing, not recommended though if you have a lot of bone damage, thankfully I did not.
I would second Tori’s advice based on my own experience with myeloma. I see articles and postings all the time about alternative “cures” and medicine to treat cancers but people who supposedly have actually had success with this approach seem to be extremely scarce. I have never met one. I can say Velcade and Dex worked extremely well on my myeloma and completely eliminated the severe back and rib pain. But these drugs overtime are hard on the body and like Tori said I believe eating as healthy and diet as possible, the kind that doctors and nutrionist have been saying we all should be doing regardless if we have cancer or not, it really important to do while on chemotherapy and recovering from chemotherapy. I feel it is not the time to experiment with esoteric diets with dubious value. I know eating right can be hard to do, in my experience I lost 50lbs and was underweight. I had trouble eating anything. Food lost its taste and I would throw up if I tried to force myself to eat, any calorie was a good calorie. I did recover fully over a few months after I stopped chemo and using opiate drugs.
I also second Tori’s advice about trying to exercise and stay active as possible to maintain your strength as long as you can. It helped me hold off the wasting of the body for a while when I was on Velcade and Dex until I was able to stop treatment with those drugs and recover. I found that exercising also helped fight off depression and took my mind of my problems for a while. I believe trying to lead as normal a life as possible, or remembering what a normal life used to be like and setting a goal to get back to that, and not building your whole existence around myeloma is really important to maintain mental health and get through this. Again, this can be hard to do at time, especially if you are in the hospital.
If acupuncture helps to relieve pain, I say use that as much as you can. I never tried it but I did use a lot of morphine and Dialudid for neuropathy and I can say that long term use of those drugs brings on a set of new problems so if acupuncture works go with that first. I found swimming helped relieve my pain better than any drug but it only lasted while I was on the water and eventually I became too weak to get myself to the pool very often.
Hang in there, if things go well for your brother you may find that recovery after treatment is over can come surprisingly quick. When I was in the hospital for my stem cell transplant and could barely walk four laps around the floor, I never imagined that in just three months I would be doing 25 to 50 mile rides on my bike again and even doing some careful skiing, not recommended though if you have a lot of bone damage, thankfully I did not.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Alternative treatments / ideas?
I am a patient of Dr. Isaacs, who works with Dr. Gonzalez in New York City. He uses Dr. Kelly's personalized metabolic diet, supplements, LOTS of detox, and pancreatic enzymes to digest the outer lining of the cancer cells so the immune system can kill the cancer.
I am drug free. People are mistaken about the right diet for multiple myeloma patients. We do better with a carnivore diet. I eat red meat 2-3 times a week. Never more then one fruit a day.
The pancreas enzymes work for any cancer.
I am drug free. People are mistaken about the right diet for multiple myeloma patients. We do better with a carnivore diet. I eat red meat 2-3 times a week. Never more then one fruit a day.
The pancreas enzymes work for any cancer.
Re: Alternative treatments / ideas?
hank you all for your careful and supportive feedback! Eric, i'm so glad to hear how you've recovered. thanks for sharing - it is simply inspiring! - and my best wishes. and my apologies for not coming back earlier. somehow this seems to be a very individual journey. acupuncture seems to work really well for him: pain relieve as well as energizing in emotional and physical way. the latter maybe also due to the steroids, though. Thanks also for your input, Dee!
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