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Recently diagnosed with AL Amyloidosis: Any advice?
Blood Cancers & Disorders | Last Active: May 18 8:14am | Replies (42)Comment receiving replies
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.
Replies to "Hi Lori thank you for the welcome. I'm a 73 year old male. My journey started..."
Happy to hear you are doing well. My husband was diagnosed with Cardiac Amyloidosis this past May at the Jacksonville Mayo Clinic. He has started with Vyndamax for Amyloidosis. Then this coming Monday July 24 he will start his chemo treatment: duratumumab +Dexamethasone+Acyclovir + Cytoxan. His Hematologist wants to stop the plama cells on producing an increase in proteins. He wants to stop this progression to avoid Multiple Myeloma. His 2 biopsies only showed these plasma cells doing that (that is what we understood) but there was no amyloid in the bone marrow. We have to wait how this treatment works for him. Did you have side effects?
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Hi @jebcyn. That’s a really inspirational story! It’s amazing how just the change in chemo regimens made such a huge difference in your disease… to the point where you didn’t require the stem cell transplant after all! That had to be frightening when the Amyloidosis came barreling back after the nice remission of 15 months. But now it’s been since 2014? That’s amazing and very encouraging.
You have a wonderful attitude and I can see you appreciate every day as a gift. I feel the same way. Thank you for sharing your story. You’ll never know how many people will be encouraged by what they see.
Congratulations on the positive checkup! Is this 6 month schedule routine for you?