Recently diagnosed with AL Amyloidosis: Any advice?

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.

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?

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?

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.

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?

I got diagnosed with Alect-2 amyloidosis 5 years ago went on kidney dialysis for 4 1/2 years and now received a transplant. Anybody who has any information on this type of amyloidosis, I’d appreciate the insight.

Welcome, @victorino, to help you connect with other members like @vmarra @jan44 @jebcyn and others, I moved your comment to this related discussion:
- Recently diagnosed with AL Amyloidosis: Any advice? https://connect.mayoclinic.org/discussion/al-amyloidosis-2/

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

Congratulations on the new kidney. When did you have your transplant? How are you doing?

My husband has been diagnosed with this disease. Are there any new treatments?

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?

I got a kidney transplant March 29 and have been on a post kidney transplant regiment. All is going good. Thank you for your concern.