← Return to Diagnosed with AL Amyloidosis. What can I expect?

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@jenrico

TMoustis:

Waiting to see what regimen of meds I will need to take. Waiting to see how
much heart involvement there is.
My dizziness is coming from a decrease in blood pressure when standing – in
a test yesterday, My bp was 134/62
while lying down and it dropped to 60/20 upon standing.

I’m not eligible for a stem cell transplant because of my age – 70+.

Jenrico

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Replies to "TMoustis: Waiting to see what regimen of meds I will need to take. Waiting to see..."

Do not worry Jenrico. Your symptoms are common for AL but will improve the more you get chemo. As far as not qualifying for transplant, many folks do not have a transplant and the newer drugs seem to be as good as getting a transplant. It is important to eat prior to chemo and make sure you training yourself to drink a lot of water. You want to be well hydrated on chemo.

I do not know where you live but if you can try and attend an Amyloidosis support meeting. A very nice person named Muriel Finkel (muriel@amyloidosissupport.com ) runs these meetings across the country. If you email her she will respond. Here is the link to their website: http://amyloidosissupport.org/index.html. They have useful information and you can meet folks that have or are going through the same thing as you.

Be strong minded. It will get better.

TMousetis

I am fortunate to live an hour away from Rochester. mn. Am having the
attention of great Amyloid specialists.

@jenrico You are fortunate, indeed, to be near to Rochester. I just want to check in and ask how treatment is progressing. How are you feeling? Rosemary