Dan Sansbury

My Amyloidosis Story by Dan Sansbury

Type: AL, Primary Amyloidosis, Lambda Light Chain, Kidney involvement
Date of Diagnosis: March 18, 2010
Treatment: Rev/Dex 5 cycles, Velcade 2 cycles, ASCT October 22, 2010

My journey with Primary Amyloidosis began in November 2007 when I was suddenly struck with extreme shortness of breath. I had recently been to Gatlinburg and had no problems hiking in the Smoky Mountains, but suddenly had extreme shortness of breath while just raking leaves. Over the next 1 years I had a nuclear stress test that showed a heart blockage, a heart catheterization that showed no blockage, chest x-ray, pulmonary function test, cardio-pulmonary exercise test, ankle-brachial index and arterial Doppler test, CT angiogram of chest, echo cardiogram, stress echo, methacoline challenge, abdominal ultrasound, EKG, CT scan of abdomen and pelvic area, and even a mammogram! I was diagnosed with hypogammaglobulinaemia, but since I had no symptoms normally associated with that problem, it was just to be followed in the future. I had an endoscope and was diagnosed with GERD. I went on Protonix and saw a huge improvement in my shortness of breath. After numerous experts and multiple tests had been run, we assumed that acid reflux was causing shortness of breath, a rare side affect of GERD. I actually felt fairly well from June 2009 until February 2010.

In February of 2010, I began having burning urination. I assumed it was a UTI and went to the doctor for antibiotics. This turned out to be prostatitis and was cleared up with strong antibiotics; however, my internist and urologist were both shocked at how much protein I was losing in my urine. With the symptoms of protein loss, edema in the legs, and elevated cholesterol I was diagnosed with Nephrotic Syndrome and referred to a nephrologist.

The nephrologist quickly ordered a kidney biopsy to find out the cause of my problems. When I went back to him for a follow-up, he explained about this rare disease of Amyloidosis. I didn't really realize how serious the disease is, but when the doctor apologized for having to give us this news, I assumed that this cannot be good!

I was referred to George Washington University Hospital where I met with Dr. Jeanny Aragon-Ching. She recognized that with Amyloidosis time was of the essence and at the same appointment got me in for blood work and a bone marrow biopsy. That biopsy showed that I had smoldering myeloma. Dr. Aragon-Ching quickly got me started on a chemotherapy regimen of Revlimid and Dexamethasone. The plan was to do 6 cycles of Revlimid and then have a Stem Cell Transplant (SCT), otherwise known as a bone marrow transplant. The Rev/Dex brought my numbers down considerably, but after 4 cycles, they leveled off and she added a regimen of another chemo named Velcade. The two chemos brought my bad proteins even lower. In March 2010, my Lamda light chains were 1,110 and by September they had dropped to 22!! I met with Dr. Imad Tabbara of GW, the SCT expert. He agreed with Dr. Aragon-Ching that I was a good candidate. He currently had five patients with Amyloidosis.

Based on research, I was not sure that a SCT was the best course of action. Prior to having this procedure, I decided to get a second opinion from the Mayo Clinic in Rochester, MN. I chose Mayo because my doctors at GW knew more about their research and recommended Mayo over Boston. On September 7 and 8, I had an evaluation by Dr. Martha Lacy of the Mayo Clinic. She was very happy with the results I had seen from chemo, however, tests at Mayo showed the early stages of heart involvement. Dr. Lacy agreed with my GW doctors that I should have an SCT. Dr. Lacy explained that the heart blockage from the stress tests did not show up on the catheterization because the amyloid deposits block the small vessels that they cannot see. Also, the hypogammaglobulinaemia was another indicator of the Amyloidosis. I was extremely satisfied with my visit to Mayo Clinic. The expertise was amazing it is obvious when consulting with a doctor that has years of experience on the illness versus one that has read a lot of literature on the disease. I have never seen health care so well organized, I had all of my various appointments and tests done in 2 days!

It was a difficult decision as to where to have the SCT done. After much deliberation, I decided to have the SCT at GW rather than Mayo Clinic. I understand that Mayo is a Center of Excellence, and I was very impressed with my recent evaluation, but I trust my doctors at GW and there is a lot to be said for being close to home. My local doctors also agreed to suggestions I brought back from Dr. Lacy and actually changed their normal protocol to match that of Mayo Clinic.

On October 6 and 7 I had a successful harvest of my stem cells. Some of these are now preserved in a deep freeze in the event that I ever need another transplant. I was admitted to GW on October 19 and had my stem cells re-infused on October 22. Other than getting a blood infection and having a severe reaction to a platelet infusion, the transplant went extremely well. Instead of the 3-4 weeks in the hospital as planned, I was released in 2 weeks. I did have to continue on IV antibiotics at home to fight the blood infection. I have been in remission since recovering from the SCT. I am not limited from any activities and other than still trying to regain my stamina and strength, I am doing very well.