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What Documentation/test Results Do We Ask For To Know That Our Grandmothers Amyloydosis Was Typed?
Children and grandchildren are wanting to know if it was the hereditary type or not. Have asked Haematologist for months now but not had anything in writing. Have got a phone consult tomorrow but worried we will just be talked over and not get what we need for the family to know if they could be affected or not. Thank you so much!
Good advice from Mary3. Thanks. Frank2 here.
All Have A Great Weekend And Be Positive
All have a great weekend and be positive
Thank you, you too!
Diagnose: I Have Amyloidois. What Should I Not Eat?
Agree with Paula. Some medications like venclexta have some fluid needs so the physicians can help coordinate with nutritionist.
Just Prescribed Vyndagel, Not Vyndamax, Is One Better Than The Other?
My husband takes Vyndamax. Just started .
Wondering About Preparation For And Safety Of Flying With Stage 3 Heart Failure Due To Amyldosis ATTR.
Has anyone taken any preparatory meds, or have advice about flying 5 hours?
Honestly, I have Stage 2 Heart Failure plus a many autoimmune, Primary immune, and Wild type cardiac amyloidosis. I’m an active senior but there is no way I’d fly anymore. Some hacks I used to use… read more
Is Loosing Your Voice A Symptom Of Amyloidosis ATTR? Throughout The Day My Voice Gets Weaker. My Diagnosis Was Two Months Ago.
I had issues with my voice too. I went to a ENT and found that one of my vocal cords was not closing all the way. I was also having swallow issues. He gave me a script for speech therapy. I went… read more
How Much Can Chemo Therapy Help AL Amyloidosis
I am starting my third month of chemo, specifically Cybordara and am told that this may continue past one year. Has anyone else had this and with how much improvement?
I did 6 months, I am in remission. I still get 1 shot 1x a month. The whole program I was told would be 24 months.
I Am On Vyndamax For 36 Months How Long Will It Keep Working For Me
I've been on it for about 3 months. I could tell the difference after about 2 months. I felt better.
Has Anyone Achieved Remission With Chemo Alone?
I’m on the fence about the stem cell transplant. I have amyloid in my heart and GI tract.
Thank you Teresa for pointing out CAR T. Let's all watch for this and see if it works. vern
Currently, Can Amyloid Deposits Be Reduced? If Not, How Do We Explain Increased Functional Capacity Of The Heart After A SCT?
My spouse's hematologist stated that the production of bad amyloid protiens can be stopped in many cases and, sometimes the 'bad amyloid protiens' already in the body can leave the body on their own… read more
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