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Recently diagnosed with AL Amyloidosis: Any advice?

Posted by vmarra @vmarra, Jul 14, 2022

My mom was recently diagnosed w AL Amyloidosis, our local hospital missed some important tests . We just had our first trip to Mayo. I feel now that my mom is discouraged and more scared than before and is declining quickly. Our local hospital did not show concern for the heart however when I look at her labs from Mayo that were done yesterday it indicates differently. I never knew what this disease was until my mom got it and I’ve been fighting hard for her since. I begged our local hospital to check heart bio markers and they just brushed me off . I’m sad , frustrated, and I just hope I’m wrong in her results that have returned thus far. She has bad neuropathy and some kidney involvement. My mom is only 60 with 4 grandkids under 10 and one on the way. Advice or suggestions on navigating all this is welcomed

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jebcyn | @jebcyn | Dec 8, 2022
In reply to @loribmt "Hi @jebcyn Welcome to Mayo Connect. It’s inspirational that you’re a 10 year survivor! Would you..." + (show)
@loribmt

Hi @jebcyn Welcome to Mayo Connect. It’s inspirational that you’re a 10 year survivor! Would you mind sharing your AL Amyloidosis journey with us?

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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.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 8, 2022
In reply to @jebcyn "Hi Lori thank you for the welcome. I'm a 73 year old male. My journey started..." + (show)
@jebcyn

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.

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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?

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 27, 2023
In reply to @vmarra "She leaves for Mayo again this weekend. And her light chains have stayed the same so..." + (show)
@vmarra

She leaves for Mayo again this weekend. And her light chains have stayed the same so that’s good right. No increase

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Good morning, @vmarra It’s been quite a while since we chatted and I was wondering how your mom is doing. I know she was heading to Mayo because she wasn’t getting very good care locally. Any news on her health?

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naiviv | @naiviv | Jul 20, 2023

My husband was diagnosed with Cardiac Amyloidosis recently at Mayo Clinic. He had 2 biopsies to confirm it. He started with Vyndamax to control his Amyloidosis. Then the biopsies showed that he has plasma cells which are increasing his Kappa/Lambda, M proteins. The Hematologist told him he has MGUS which is related to all of this process. This coming Monday he will be starting a new drug “durutumumab” specifically for that in addition to Cytoxan + Dexamethasone(prednisone)+ Acyclovir (antiviral). As a RN I never heard about Amyloidosis but I have knowledge of what MultipleMyeloma is. This treatment will stop the plasma cells of increasing these proteins. We will have to wait how all these treatments work on him. My husband is 80 yrs old. Hope your mom gets better.

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naiviv | @naiviv | Jul 20, 2023
In reply to @jebcyn "Hi Lori thank you for the welcome. I'm a 73 year old male. My journey started..." + (show)
@jebcyn

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.

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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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