Aug 24, 2016 Latest post:
Mar 14, 2019
Steve was diagnosed with Smoldering Multiple Myeloma in August 2015. Throughout the next year the doctors followed him closely with lab work every few months to make sure there was no progression in the disease.
In July 2016 while receiving a 2nd opinion, Steve learned that he also had another very rare disease called Amyloidosis.
Amyloidosis is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. The amyloid protein can deposit into organs, tissues, nerves and other places in the body. When that happens, normal function of the area is affected. As the amyloid protein increases, health problems and organ damage occur.
There are different types of Amyloidosis. AL Amyloidosis is his most likely diagnosis as this type is associated with Multiple Myeloma and thus far his lab work supports this diagnosis. They are waiting on one final lab before an official diagnosis can be made.
There are only about 4,500 people diagnosed with AL Amyloidosis every year in the U.S. There are only 16 treatment centers in the U.S. for Amyloidosis so his care was once again transferred to The Mayo Clinic in Rochester, MN. We feel very lucky that there was a treatment center so close to home.
Treatment for AL Amyloidosis depends on how severely the disease has progressed. Best case scenario it involves chemotherapy and a stem cell (bone marrow) transplant. This combination therapy helps to slow down (or stop) the overproduction of the amyloid protein. There is also potentially a new clinical trial drug that he may qualify for down the road.
At this time, it is not a guarantee that Steve qualifies for a stem cell transplant but it sounds very likely that he does qualify. The tests have revealed that the Amyloidosis has affected his small intestine, kidneys, fat, and heart. They have typed him with Stage 1 Amyloidosis. Reversing any damage to the organs and other parts of the body is difficult to achieve and can take years.
Steve started chemo August 17th, 2016. His chemo regimen will be a weekly chemo shot and numerous pills including a chemo pill, steroids and symptom management pills such as anti-nausea medication. He will continue this up until the stem cell transplant. The stem cell transplant will hopefully take place in 6-8 weeks pending final diagnosis and insurance approval. During the stem cell replacement, he will be living at the transplant house in Rochester and will need 24/7 supervision by family/friends. He will go into mayo every day for his treatments and chemo. They are presuming that he could be in the transplant house for 2-3 months.
We thank you for the kind words, support, and prayers. My dad is confident that with the support of family/friends he will get through this and overcome the battle with Amyloidosis and Myeloma :)
We will post updates for family/friends on this site as things progress over the next few weeks and months.