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DiscussionRecently diagnosed with AL Amyloidosis: Any advice?
Blood Cancers & Disorders | Last Active: May 18, 2024 | Replies (42)Comment receiving replies
Replies to "Hi @jebcyn Welcome to Mayo Connect. It’s inspirational that you’re a 10 year survivor! Would you..."
Hi Lori thank you for the welcome. I'm a 73 year old male. My journey started Dec. 2010 and it took till Dec. 2011 to get a diagnoses. Primary Amyloidosis affecting my stomach,heart kidneys and most likely liver and by that time I had to stop several times just to get into the Dr.s office because of low blood pressure. Didn't matter if it was raining or freezing out we had to stop so BP could build back up. My wife of 52 years was with me. Anyway they put me on chemo (at the VA) but also told me I should go to the Mayo. So the Mayo had me on chemo for 10 months (late dec. 2011 to oct.2012). 15 months after that it came back strong. The Mayo then put me on a different type of chemo rather than transplant (they had already harvested my stem cells) and my numbers kept coming down and going back to normal. That was late Jan. 2014 to Sep. 2014. I just had my 6 month checkup yesterday with Dr. Leung in Rochester and everything is looking good. No concerns. My life has been good. Still have some issues with my blood pressure dropping occasionally, but everyone has issues. I feel blessed.