My Amyloidosis

Just back from 6 monthly trip to the old smoke.  Went down in my best health since amyloid discovered but knew plasma cells were slowly kicking back in so was prepared for results not being great.  Before I get into the gruesome facts we had a great time during the visit.  That’s mad I here you say but thought that whilst down London may as well do something since I was feeling ok.  We went to the Theatre and watched Calender girls and Kelly Brook was pretty hot although the plot was a bit dark (based on serious illness - doh!)

Anyway, got a bit of a shock as consultant suggested Stem cell transplantation as next treatment - asap!  I was like - what! - but he explained that overall (even though there is slight cardiac involvment = no no for Stem cell transplantation) he explained my data was showing a strong improvement in heart performance.  This, coupled with chemo only lasting 12 months (stopped first cource Dec 3rd 08), he thought this would be best chance of longer period between treatments.  Locally they were suggesting Velcade as next treatment but London said that this may only give another partial response say for 12 - 36 months?  He also said that if the amyloid deposits on the Heart got much worse then we couldn’t take this opportunity.  Big Decision coming up!  Will meet with local team and decide with family but thinking at present to go with experts!

Looks like my golf training will have to be back on hold for a few months, although making plans to take putter machine into stem room to keep eye in!!

let you know decision asap

choo

Phil

Filed under: Latest News on December 8th, 2009