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Recently diagnosed with AL Amyloidosis: Any advice?

Blood Cancers & Disorders | Last Active: May 18 8:14am | Replies (42)
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@colleenyoung

Welcome @mimi4968, I moved your question about new treatments for AL amyloidosis to this existing discussion:
~ Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/
I did this so you can read previous posts and connect with other members like @victorino @vmarra @jan44 @jebcyn and others.

Using the group search you can also see more comments and discussions that may interest you. See all here https://connect.mayoclinic.org/search/discussions/?search=Amyloidosis

AL (primary) amyloidosis can be systemic (throughout the whole body) and can affect organs like heart, kidneys, liver, spleen, nervous system and digestive tract. Treatments may include chemotherapy with strong drugs used to treat cancer. Other types of medications can reduce amyloid production and control symptoms. Some people may benefit from organ or stem cell transplants.

What treatment options are being suggested for your husband?

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Replies to "Welcome @mimi4968, I moved your question about new treatments for AL amyloidosis to this existing discussion:..."
soonerfan | @soonerfan | May 17 10:00am

I was diagnosed with system amyloidosis AL in March @ the Mayo Clinic in Rochester Minnesota. I also have hypertrophic obstructive cardiomyopathy. I am currently on my second session of my second round of chemo shots. I am feeling a little more human😊. I still have dizzy spells. I am checking my blood pressure 3x daily and taking Midodrine for upping my low #’s. Throughout the day. I feel like I’ve been hit with a double whammy, with both of these diagnoses. I am joining to be found a stem cell transplant when they think these treatments have done their job.
Then I am looking forward to chasing my now 3 month old grandson around. He is my main focus in getting back to “normal”.
I only know what I’ve been through but I’ll tell you anything you want to know.
Good luck.

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