Age 89, Congestive heart failure, Osteoarthritis, and Glaucoma.
On Vyndamax 6 years
That’s ridiculous!
https://www.drugs.com/search.php?searchterm=Vyn...
I found the above. As far as supplements you could google ex: tumeric interactions with vyndamax. Do each supplement separately.
… read moreHi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more
I had a stent put in my left eye 3 years ago and now have about 10% vision. Right eye has about 80% vision. My understanding is the Glaucoma attacks the optic nerve and there is no cure available. I… read more
I am Millard Collins. I have AL Amyloidosis. At the first part of October 2022 I started taking the usual chemo treatments with Cyclophosphomide, Bortezomib, Daratumumab and Dexamethasone. Starting out my lamba light chains was 92 after 4 1/2 cycles (17 treatments) they only went down to 75 dropping down to 65 once then up to 85 then back down to 75. My SGGT spiked to 276. So we stopped the chemo treatments two weeks ago. I see my oncologist in two days to see what different route we are going… read more
I am being treated with Daratumumab + Dexamethasone every 3 months. It is one of the gold standards for treatment for Amyloidosis. I tend to shy away from any unconventional treatment. If your friend… read more
I have an enlarged liver (19cm) and protein in my urine but not showing up in my blood My basic blood work is otherwise normal. I am waiting for my provider to confirm the diagnosis.One year ago I lost 1olbs weight and I have neuropathy in my toes but no other obvious symptoms. Does this sound like early stage amyloidosis?
Additional thought to earlier post: With hindsight I can specify when to the week I became infected with AL almyloidisis. In late Sept 2020 my VO2Max started a long dive . VO2Max is available from… read more
Just diagnosed at 57 w/ AL. In process of getting two opinions.
Hate to hear about your back problems Vern. I. didn't know amyloidosis could do that. I wish you a pain free future.
What treatment options are being offered to you/are you doing? The organ affected is my kidneys.
Thankfully, my wife’s insurance has covered almost everything, they have done to me except the deductible on prescriptions. If we didn’t have the insurance, we would have lost our home, cars, boat and… read more
Same here my friend. 3 years too.
Hi Jen
Meant to get back to you yesterday. I apologize for the delay.
I did 3 Cycles of CyBorD.
4 cycles of Dara, Velcade and Dex
8 cycles Carfilzomib, Revelimid and Dex
Hello. I am from Vietnam. In VietNam we can not receive any information about Amyloidosis. It is really new here
- This disease was first reported in my grandmother. Then my grandmother gave birth to 8 children. 7 out of 8 people get sick. 3 of them died, including my father
- Recorded symptoms include: enlarged heart, leg edema, persistent diarrhea. Doctors could not say exactly where the disease came from. Because almost every things has problems. But the heart is the biggest problem.… read more
You’re not able to get chemo in Vietnam?