Amyloidosis Treatment by Experts, Centered Around You.

Jaime Lowenberg shares his story about his amyloid care at Mayo Clinic in Arizona

My name is Jaime Lowenberg and I am a resident of El Paso, Texas. I married my wife, Jennifer, and we have two children. Having been very active most of my life, several years ago, we would just be on walks or hikes and I started to feel this shortness of breath. Progressively, the symptoms started to get worse. I was playing tennis match and after every point I would have to stop and catch my breath and literally bend down to be able to catch my breath. I said there's definitely something not right. So I went to the cardiologists. He ordered some more tests, sent me to a nephrologist. And in conclusion, they said that it looked like there were some amyloid buildup in the heart that was also affecting the kidneys. And the nephrologist said that I was in the early stages of what's called nephrotic syndrome. He felt that my best bet was to come to the Mayo Clinic. He felt that the treatment level that I would receive would be superior to any other place.

AL amyloidosis is a condition that ultimately is a hematologic malignancy. It's a blood cancer. It's a close cousin of multiple myeloma. And ultimately this is coming from a cell in our immune system known as a plasma cell that I tell all my patients, this is normally our ally, this makes antibodies that help protect us, but unfortunately can develop abnormalities that make a protein that instead of protecting us, is unstable because of the misfolding of the protein. And this can deposit in places like our kidneys, our heart, or liver, our nerves. And you can take 100 patients with this diagnosis, and it can look 25 different ways based on where these abnormal amyloid proteins ultimately end up depositing.

When I heard those terms, what do you do nowadays? I mean, you start to Google everything and you start to research it. And the first thing that comes to your mind is like, okay, what is the prognosis? What am I in for and how long am I going to live? And those are the first things that come to your mind.

Historically with AL amyloidosis, we use a staging model that really is based on the level of cardiac dysfunction at initial diagnosis. And historically even with standard of care therapy, someone with end-stage AL amyloidosis or stage four disease, which Mr. Lowenberg would have qualified as, with best therapy, median survival was six months. That data has, has morphed. That information is still out there if you do a web search. And that's why this is so terrifying as a patient with a new diagnosis and you go looking for answers.

When you receive news about a diagnosis, it's always shocking. It was just that feeling of I can't do anything else for my family, but I can't give up. I kept telling myself I've got two children, I've got a wife, I've got a family. I have to continue fighting. We got to Phoenix and we had the initial consultation with Dr. Larson.

When it comes to treatment, I tell all my patients, this really comes into two forms. One is shutting off the amyloid factory, which means taking these abnormal cells that live in the bone marrow and targeting those effectively. And nowadays this is with multiagent therapy, can use stem cell transplant, but many times, non transplant approach can be very successful as well. But equally important, I would say the supportive care while we are shutting off this amyloid factory, because those old proteins that are still in the heart, still in the kidneys, are there in patients who are experiencing heart failure symptoms and kidney dysfunction. Using the support of the cardiology colleagues to help patients get through that difficult time allows us to get them from point A to point B. So it's the supportive care model here at Mayo that I think makes what we have to offer so unique.

After my first visit with Dr. Larson, I knew that I was going to receive the best treatment that I could. I knew that we had made the right choice.

Amyloidosis has always been considered a rare disease. But we actually think, is it just under-diagnosed? I see an amyloid patient at least daily, if not multiple times a day. So I actually don't think of amyloidosis as being a rare disease. His stem cell transplant was a success. He's now been in hematological remission for a few years and he's back to living his life, playing his tennis, going to cycle class, and it just feels really good. And I think one of the things that we do great here at Mayo Arizona, and perhaps or hopefully this is why Mr. Lowenberg chose our program, is that we really do have a collaborative care model and an excellent care team between hematology, neurology, cardiology, and nephrology. to not only help make the diagnosis in these patients, but develop an individualized care plan for each of our patients living with amyloid.

It takes faith and hope that things are going to change. I kept telling myself it's like I can't go now. I don't want to go now and I don't plan on going now. Having come to the Mayo Clinic from the beginning of my treatment was probably the best choice that I could have made.