The Beacon recently published two articles related to amyloidosis and multiple myeloma.
The articles have prompted several requests for a better way for multiple myeloma patients with amyloidosis to keep in touch with each other and exchange experiences and learnings.
We therefore have created this new thread in the forum. It will be dedicated to discussion focused on multiple myeloma and amyloidosis.
Feel free to use the thread to post information helpful to myeloma patients with amyloidosis, to ask questions of your fellow patients, and to share what has been going on during your battle with both myeloma and amyloidosis.
Members of the Beacon staff also occasionally will post here any amyloidosis-related information they feel might be useful.
Forums
Re: Amyloidosis and multiple myeloma
My wife passed away from myeloma/amyloidosis last Sept - my research has centered on possible relationship with rheumatic fever - I can share more info if there is an interest
Re: Amyloidosis and Multiple Myeloma
Marti,
I'm sorry to hear about your wife's passing. You have my condolences.
I would be very interested to hear what you've learned through your research. Would you be interested in posting some of your findings here in this forum? Or do you wish to share your findings in some other way?
I'm sorry to hear about your wife's passing. You have my condolences.
I would be very interested to hear what you've learned through your research. Would you be interested in posting some of your findings here in this forum? Or do you wish to share your findings in some other way?
Re: Amyloidosis and multiple myeloma
I will work on sharing the specific study details but at a high level it has involved data relating to common factors found in myeloma and rheumatic fever: CW2 antigens and the MEFV gene mutation (identified in Familial Mediterranean Fever syndrome). However, not being medically trained I don't pretend to understand everything I have read ...
Re: Amyloidosis and multiple myeloma
I was diagnosed with multiple myeloma and amyloidosis in December 2011 at the age of 55. Total kidney involvement and some heart damage. Was on dialysis for 3 months and started immediately on dexamethasone & Velcade. Refused to consider home dialysis & instead researched like mad and used diet & juicing to heal my kidneys with dialysis support of course.
Was very resistant to stem cell transplant, but went for a consult at the Mayo Clinic in Scottsdale. Kidneys working adequately now and, after testing, the doctors at the Mayo actually used the big R word - remission! Still do Velcade sub-q every 2 weeks because it works and why screw with what's working!
Never ever ever ever give up!
Was very resistant to stem cell transplant, but went for a consult at the Mayo Clinic in Scottsdale. Kidneys working adequately now and, after testing, the doctors at the Mayo actually used the big R word - remission! Still do Velcade sub-q every 2 weeks because it works and why screw with what's working!
Never ever ever ever give up!
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Joni B
Re: Amyloidosis and multiple myeloma
Joni B ... LOVE your story ... thanks for sharing! 
Would you mind sharing any details or references for your juice & diet suggestions. I think a lot of us could benefit from suggestions for restoring health in our kidneys!!
Glad to hear your doing well ... you're an inspiration!
Would you mind sharing any details or references for your juice & diet suggestions. I think a lot of us could benefit from suggestions for restoring health in our kidneys!!Glad to hear your doing well ... you're an inspiration!
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: Amyloidosis and multiple myeloma
Sorry to hear of your loss Marti. I would be interested in what you have found relating to rheumatic fever. Especially the time frame.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Amyloidosis and multiple myeloma
I can also relate a good story. Don't give up hope if you get one or both of these diseases.
I have both, diagnosed at age 38 in Aug, 2011. Confirmed heart and GI involvement. No symptoms in GI and kidneys were fine, but heart was affected a lot. Shouldn't have breathing problems at my age.
Anyway, 16 weeks of RVD and 2 autologous stem cell transplants later and I'm in complete remission as of July 2012. Crazy year, but now I'm on Velcade SubQ maintenance once per month forever basically -- or at least til I get hit by a car at age 90
My cardiologist does yearly echos and MRIs of my heart to make sure no more damage is occurring, and he actually said at the last appointment that my heart, if he didn't know my history, he would have said I'm a complete normal heart for someone 40 years old. He also said that if I had been in California with one of his colleagues at Stanford in 2011, that with my damage I would have been put on the heart transplant list. Wow, I could not even imagine that.
My overall point is not only can you stop the damage, you can also reverse it which isn't widely known or understood by a lot of doctors.
Ray
I have both, diagnosed at age 38 in Aug, 2011. Confirmed heart and GI involvement. No symptoms in GI and kidneys were fine, but heart was affected a lot. Shouldn't have breathing problems at my age.
Anyway, 16 weeks of RVD and 2 autologous stem cell transplants later and I'm in complete remission as of July 2012. Crazy year, but now I'm on Velcade SubQ maintenance once per month forever basically -- or at least til I get hit by a car at age 90
My cardiologist does yearly echos and MRIs of my heart to make sure no more damage is occurring, and he actually said at the last appointment that my heart, if he didn't know my history, he would have said I'm a complete normal heart for someone 40 years old. He also said that if I had been in California with one of his colleagues at Stanford in 2011, that with my damage I would have been put on the heart transplant list. Wow, I could not even imagine that.
My overall point is not only can you stop the damage, you can also reverse it which isn't widely known or understood by a lot of doctors.
Ray
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Amyloidosis and multiple myeloma
Great story Ray. It doesn't always pay to read the internet, I have terrified myself by reading that anyone with cardiac amyloidosis will not live beyond 12 months. It's just so encouraging to read your post and I wish you all tye best for the future, xx
Re: Amyloidosis and multiple myeloma
Lizzie I am happy to share. In fact had blood work done last week and creatinine is at a new low of 1.5 after peaking at 5.1. I'm ecstatic!
For juicing I sprouted, grew, and juiced wheat grass. You can learn how via u-tube. Tons of vitamins and healing properties. You can do other veggies too. For diet I had to watch phosphorous and things that the kidneys couldn't filter since that was my problem.
It's easier to tell you what I could eat. A very small list! Cream of wheat for breakfast, no dairy. Leafy green veggies more simple proteins like small amounts of eggs chicken & fish. No citrus except lemon in water. It affects ph and you want to be alkaline. No sugar. No tomatoes. No whole wheat or beans etc.
Then I took it a step further and added foods that helped filter your blood so my kidneys didn't have to do all the work like artichokes. Tons of artichokes. Nettle tea is great. No coffee. Absolutely no soda pop! And my favorite was berries. I froze them and made smoothies every night with berries, almond milk and a bit of stevia.
Do some research and you will learn more. Stay away from the kidney association site. They have you using coffee mate of all things. Go to more holistic sites and research the issue of ph and your kidneys.
Hope this helps!
For juicing I sprouted, grew, and juiced wheat grass. You can learn how via u-tube. Tons of vitamins and healing properties. You can do other veggies too. For diet I had to watch phosphorous and things that the kidneys couldn't filter since that was my problem.
It's easier to tell you what I could eat. A very small list! Cream of wheat for breakfast, no dairy. Leafy green veggies more simple proteins like small amounts of eggs chicken & fish. No citrus except lemon in water. It affects ph and you want to be alkaline. No sugar. No tomatoes. No whole wheat or beans etc.
Then I took it a step further and added foods that helped filter your blood so my kidneys didn't have to do all the work like artichokes. Tons of artichokes. Nettle tea is great. No coffee. Absolutely no soda pop! And my favorite was berries. I froze them and made smoothies every night with berries, almond milk and a bit of stevia.
Do some research and you will learn more. Stay away from the kidney association site. They have you using coffee mate of all things. Go to more holistic sites and research the issue of ph and your kidneys.
Hope this helps!
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Joni B
19 posts
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