Fred (Anyonymous)

Fred Synopsis of Medical Background (April 2003 to January 2014)

About April of 2003, I noticed a loss of muscle strength that could not be explained by my advancing age.

A doctor in Walla Walla thought I might have myositis or some form of muscular dystrophy. He recommended I see a specialist on the matter.

A local medical person here in the Tri-Cities got me an appointment with a doctor at the University of Washington Medical Center in Seattle on February 3, 2004. After blood tests and a muscle biopsy (which was returned as normal) he put me on prednisone. My body did not react well to that drug and I got off it December 6, 2004. After going to UW Medical Center for 10 months, I was disappointed in the results and decided to go elsewhere.

Friends of mine recommended Mayo Clinic in Rochester, Minnesota. In mid-November a phone call there got me an appointment for mid-January of 2005. I was there five days and the diagnosis was amyloid myopathy. My second and third visits there built additional information about my medical problems.

On March 8, 2005, I was notified by phone that I had multiple myeloma with primary amyloidosis. I was thought to be in good enough shape that I could undergo stem cell transplant even though I was two years over the age limit of 70. Therefore I started the autogolous stem cell transplant procedure on May 22, 2005.

For about a week I received G-SCF (Neupogen) twice a day. Collection of CD-34 cells will not be done until the level is at a minimum of 10 million cells per Kg of body weight. The record at Mayo is 123,000,000 cells per Kg of body weight. I had 82,000,000 for my collection, which is called apheresis. In three collections I had 9.13 x 10 to the 6th power per Kg of CD-34 cells. The cells were cleaned up and dissolved in dimethyl sulfoxide and can be stored indefinitely.

On June 7 and 8 I received 140 mg of melphalan. On June 9, 2005, I received the stem cell transplant of 4.57 x 10 to the 6th power of CD-34 cells. The transfer is done through a Hickman device implanted in the chest into a blood vessel. Three nurses rotated to administer them. They used 6 units of 50 ml syringes in about a 5 to 6-minute period per syringe.

I engrafted in 13 days and recuperated at Rochester Methodist Hospital until my release on June 30, 2005, at which time I flew home.

My 100-day review was done September 19, 2005. No further treatment was done at that time. Troponin-T level was reported as slightly elevated at 0.16 Ng/ml, and NT-Pro BNP was 68. The stem cell transplant was deemed only partially successful.

In 2008 I was put on a weekly melphalan dose of 14 mg for 12 weeks. That treatment did not work as the lambda FLC went up to 13.9 mg/dl.

I signed upp for Medicare Part D drug coverage in November of 2008. Then in 2009 I was given 68 doses of Revlimid. The lambda FLC fell to 5.24 mg/dl, but then went back up at the end of the year to 7.73 mg/dl. In 2010 I was given another 68 doses of Revlimid, and again it did not reduce the lambda FLC anywhere near the desired range.

In 2011, the Mayo doctor recommended Velcade once a week for 12 weeks. By June the lambda FLC had decreased to 1.42 mg/dl. In 2012 the lambda FLC had increased to 3.74 mg/dl by July. I then received 11 more doses of Velcade until October 10 when the lambda FLC was back to 1.84 mg/dl.

Since then, I have blood tests of a quarterly basis. The lambda FLC has pretty much plateaued and stood at 2.40 mg/dl (the last reading) on November 5, 2013.

In June of 2012 I had been informed that I had primary FLC amyloidosis with underlying MGUS rather than multiple myeloma. Which meant an improvement in the MM condition. In the last 12 visits to Mayo, serum electrophoresis tests reported no apparent monoclonal M peak.

I've not had swollen ankles, body pain, needed dialysis nor had peripheral neuropathy, but do have amyloid tissue in my heart and in my legs.

Obtaining a copy of Harrison's "Principlee of Internal Medicine," 18th Edition (2 volumes). Chapter 111, Plasma Cell Disorders, pages 936 to 942, gives one a lot of information on MM that will help you better understand what one is up against. Your local library may be able to get you this publication as the purchase price is likely prohibitive. The information has helped me a good deal.