Hello, I'm so grateful for your openness and simply presence in this forum!
My brother has multiple myeloma since August 2013, got emergency operated at L2/kyphoplasty and after that radiation. He has still tremendous pain, for now no further treatment planned, in December he'll have to be operated on his thymus due to possible cancer there which according to a respected doctor is not connected to multiple myeloma.
My brother is father of two girls (4 and 7 years old) and self employed, with his wife, therefore not giving himself the necessary time to pause.
My questions - What can he do to protect/strengthen his immune system, his kidneys, his bones? Can any alternative treatment help such as acupuncture? Any idea in respect to diet? Should he drink a lot or "simpy" follow his normal habits?
He was a pretty fit guy, just turned 50, to see his pain -- to hear it via phone when we talk (as I'm in Europe, he is in New York) -- is simply horrible. But i guess you all can relate to that.
We were visiting with him in August when that operation had to be done and I could see what excruciating pain it was - now i'm simply scared and feel helpless.
Thanks for any input - and all my best to all of you!
Forums
Re: Brother has multiple myeloma - what should he do?
Im sorry about the recent diagnosis of your brother. My dad has multiple myeloma as well. He was diagnosed in 2006. I would advice your brother to try to eat food that are alkaline and stop eating dairy and processed foods. if he eats chicken, and fish make sure its organic. Juicing vegetables such as kale, spinich is good for the immune system. Eating goji berries, acai and superfoods are great as well. look into a more plant based diet and have him drink water with a high ph balance.Cancer cannot live in an alkaline environment. good luck:)
Re: Brother has multiple myeloma - what should he do?
thanks a lot! that helps a lot. and - i so hope that your dad is doing ok?
does anyone have experiences with post-radiation? how does one improve - i just know that beggining of treatment with radiation it's supposed to get worse and then slowly better. but now his radiation is finished, he had 26 times, intensity 4500 (whatever that means...) he's on dexamethasone and oxydocone now. and seems in a bit of a hole, as his pain is still there.
it's unclear to me what can help to further improve?
have a good weekend, everyone!
heike
does anyone have experiences with post-radiation? how does one improve - i just know that beggining of treatment with radiation it's supposed to get worse and then slowly better. but now his radiation is finished, he had 26 times, intensity 4500 (whatever that means...) he's on dexamethasone and oxydocone now. and seems in a bit of a hole, as his pain is still there.
it's unclear to me what can help to further improve?
have a good weekend, everyone!
heike
Re: Brother has multiple myeloma - what should he do?
Hi, Tell him to try curcumin 4 gm a day. My brother takes it and is in remission. As for his side effects from chemo and radiation, they're worse than ever, but for now the cancer is gone.
Good luck and God Bless.
Good luck and God Bless.
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Brother has multiple myeloma - what should he do?
Heike,
Regarding curcumin, you can find a wide range of forum discussions on the subject at this link.
Also, the Beacon's news articles about curcumin can be found at the Beacon curcumin topic (tag) page.
Regarding curcumin, you can find a wide range of forum discussions on the subject at this link.
Also, the Beacon's news articles about curcumin can be found at the Beacon curcumin topic (tag) page.
Re: Brother has multiple myeloma - what should he do?
For some additional information on the "alkiline/acidic" issue, see http://www.livestrong.com/article/521920-acid-vs-alkaline-and-cancer/
This idea is basically debunked by the very small range of pH in blood..... One of many cancer "miracles" out there Google it...
Wesley
This idea is basically debunked by the very small range of pH in blood..... One of many cancer "miracles" out there Google it...
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Brother has multiple myeloma - what should he do?
this is one lesson in research it seems. big thank you to all of your support! and - heartfelt wishes to everyone
heike
heike
Re: Brother has multiple myeloma - what should he do?
By now your brother's pain from the kyphoplasty and from the radiation should have decreased dramatically. The 4500 that you mention with the radiation is the number of grays that he had. It is a unit of measurement of radiation. It does take time to recover from radiation treatment of that level. If you know anyone who has had radiation for breast cancer and know what they went through, you can sort of extrapolate it to your brother.
Is he receiving any treatment for the Myeloma other than the Dex and is he receiving any treatment for the bone lesions, such as Zometa or Aredia infusions on a regular basis? Has he seen a pain specialist or a palliative care doctor concerning the coninuing pain? If not, I would recommend that. Acupunture may help with the pain. It couldn't hurt. Where is he being treated? Are the multiple myeloma doctor and the thyroid doctor conferring with one another?
Lots of questions for you and your brother. I can't imagine how hard this is on you being so far away. My sister lives a 1000 miles from me and really has a hard time with my minimal crises in comparison with what your brother has been going through. Look for a support group for Myeloma where you live. Contact the International Myeloma Foundation to find out if there is one in your area. Even though you don't have Myeloma and you aren't a direct caregiver, you can learn a lot that may help your brother with ideas. Encourage him to do the same where he lives.
The best to you and your brother,
Nancy in Phila
Is he receiving any treatment for the Myeloma other than the Dex and is he receiving any treatment for the bone lesions, such as Zometa or Aredia infusions on a regular basis? Has he seen a pain specialist or a palliative care doctor concerning the coninuing pain? If not, I would recommend that. Acupunture may help with the pain. It couldn't hurt. Where is he being treated? Are the multiple myeloma doctor and the thyroid doctor conferring with one another?
Lots of questions for you and your brother. I can't imagine how hard this is on you being so far away. My sister lives a 1000 miles from me and really has a hard time with my minimal crises in comparison with what your brother has been going through. Look for a support group for Myeloma where you live. Contact the International Myeloma Foundation to find out if there is one in your area. Even though you don't have Myeloma and you aren't a direct caregiver, you can learn a lot that may help your brother with ideas. Encourage him to do the same where he lives.
The best to you and your brother,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Brother has multiple myeloma - what should he do?
Dear Nancy, I feel humbled by this all - it's hard to express. It really is a club of some sorts as I read Libby C saying. and - hey, i'm so far away that this feels surreal.
I'm grateful for your clear input and yes, i have contacted mmrf and will be at a patients/practitioners day on 23rd of Nov - pls whoever might read it: do pass on questions to me and i'll be happy to ask it, it's held at University of Freiburg, together with U. of Heidelberg, leading in research of multiple myeloma in Germany seemingly.
Thanks for clarifying again, Nancy, I'll pass on the questions to my brother as I cannot answer them - feeling, no, those to oncologists are not in touch. And he had a real bad day yesterday (pain, nausea, headaches) which may be due to last day radiation and dex the day before? He had gone down (as suttested by doc) and then up again (acc to his own "intuition") and now down and off dex - which seems to have been a bit much. Today seems to have been a better day so far - there's the time difference, so i 'm not sure yet, and he's working again - how can you get a father/husband/ breadwinner to simply p a u s e. Break and recuperate?
I so appreciate your encouraging words and - feel simply grateful that internet exists, our paths have crossed, strangely enough your disease does make sense: you do help, Nancy.
Take care, have a good weekend!
heike
I'm grateful for your clear input and yes, i have contacted mmrf and will be at a patients/practitioners day on 23rd of Nov - pls whoever might read it: do pass on questions to me and i'll be happy to ask it, it's held at University of Freiburg, together with U. of Heidelberg, leading in research of multiple myeloma in Germany seemingly.
Thanks for clarifying again, Nancy, I'll pass on the questions to my brother as I cannot answer them - feeling, no, those to oncologists are not in touch. And he had a real bad day yesterday (pain, nausea, headaches) which may be due to last day radiation and dex the day before? He had gone down (as suttested by doc) and then up again (acc to his own "intuition") and now down and off dex - which seems to have been a bit much. Today seems to have been a better day so far - there's the time difference, so i 'm not sure yet, and he's working again - how can you get a father/husband/ breadwinner to simply p a u s e. Break and recuperate?
I so appreciate your encouraging words and - feel simply grateful that internet exists, our paths have crossed, strangely enough your disease does make sense: you do help, Nancy.
Take care, have a good weekend!
heike
Re: Brother has multiple myeloma - what should he do?
>Is he receiving any treatment for the Myeloma other than the Dex and is he receiving any treatment for the bone lesions, such as Zometa or Aredia infusions on a regular basis? Has he seen a pain specialist or a palliative care doctor concerning the coninuing pain?
So, Nancy is right in asking all these questions. While I am huge believer in alternative medical approaches (and I actively utilize them for my early stage of myeloma), with this kind of bone damage, you are beyond what I call the "tipping point" of trying to manage the disease with just natural approaches. 1. You want to be working with a myeloma specialist and 2) consider additional myeloma medications beyond just Dex (Velcade, Revlimid, Kyrpolis, etc), as well as Zometa for the bone problems, like Nancy suggested.
As far as the alkaline diet suggestion is concerned, I agree with the other post and that I personally consider it a false hope that has no true scientific basis. Curcumin and a healthy diet rich in organic vegetables and fruits is a great first move in helping with the cancer and one's health overall, but is not a substitute for conventional treatments at this stage. You can also explore anti-inflammatory diets, which also rely on organic vegetables and fruits.
So, Nancy is right in asking all these questions. While I am huge believer in alternative medical approaches (and I actively utilize them for my early stage of myeloma), with this kind of bone damage, you are beyond what I call the "tipping point" of trying to manage the disease with just natural approaches. 1. You want to be working with a myeloma specialist and 2) consider additional myeloma medications beyond just Dex (Velcade, Revlimid, Kyrpolis, etc), as well as Zometa for the bone problems, like Nancy suggested.
As far as the alkaline diet suggestion is concerned, I agree with the other post and that I personally consider it a false hope that has no true scientific basis. Curcumin and a healthy diet rich in organic vegetables and fruits is a great first move in helping with the cancer and one's health overall, but is not a substitute for conventional treatments at this stage. You can also explore anti-inflammatory diets, which also rely on organic vegetables and fruits.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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