[Dave]

38 year old male diagnosed with multiple myeloma

by Dave on Fri Dec 21, 2012 2:01 pm

My journey began shortly after starting a new job where I soon felt back pain and some pain getting out of bed. As the job required FIFO to Barrow Island, I could not committ to living away from home in such pain & I had to resign.

Soon after leaving work I started vomiting daily for three weeks and couldn't keep much food down. Completely lost my appetite and began feeling weak, stiff and sore and needing more bed rest. I saw a Reumatologist who misdiagnosed me with Ankylosing Spondylitis who prescribed 1000mg of Naltrexone which I didn't take. What we didn't know at the time was I was I was in kidney failure and taking this might have pushed me over the edge.

Fortunately a new doctor I had recently seen requested a blood test and the following day I had a call from his office to come to the clinic where I was told to admit myself to hospital immediately, so I did so that afternoon. Creatin was 806. Kappa 2300.

Hospital involved scans, bone and kidney biopsy and blood test to confirm multiple myeloma and I was given a room in the renal ward. What followed a few days later was the insertion of a Hickman line, 5 consecutive days of high cut off dialysis, 8 hours per day, followed by another 4 days alternating with a day off.

Chemotherapy started with Velcade, Dexamethasone and Cyclophosphamide. My pain and weakness got worse with each day and I had to sit in the shower for fear of falling, my haemoglobin levels got down to 74.

The Haematologist was driven to commit me into having radiotherapy as she was certain it would give me pain relief, however she admitted later after I refused the treatment given the risks that it would not make any difference. She also wanted me to take Zomata and SCT, but as I have been pursuing alternative treatments this was going down a path I don't want to take.
Finally got discharged as an out patient but needed a Zimmer frame, toilet seat and chair to give me assistance at home.

Fast forward to now (10 weeks later) and I have booked a three week stay at Dr Herzog's hospital approx 70kms out of Frankfurt, Germany for a range of treatments, notably whole body hyperthermia taken with low dose chemo.

[Kevin J]

Re: 38 year old male diagnosed with multiple myeloma

by Kevin J on Fri Dec 21, 2012 11:21 pm

Dave,
All I can say is wow - what a rough path you've been down, and still relatively young. I (and I imagine others) would be very interested to know how your treatment goes since it's somewhat less conventional. Do you feel like providing some insight why you chose this route?