Hi Vicki and Colin
I was diagnosed in Aug 2011 after my wife and I returned from one of our regular trips to Northen Scotland,cycling,camping,hill walking sort of stuff,I am 40 years old so one of the younger end on the site.
I cant remember what my initial counts were as my head was all over the place after the diagnosis.(I also had lower back pain which was caused by a tumor,had radiotherapy which seems to have worked).
I have the Bence Jones MM and was initially placed on the Myeloma 11 trial-Revlamid Cyclophosphamide Dexamethasone (RCD)I had 4 cycles which worked well and Bence count came down to about 3 or 4.Xmas came and went,we went away back to Scotland at new years (not taking any meds now due to planned SCT).Then started with the rigors (shakes and cold) on return took my temp 38.5,phoned hospital and straight in.Back out after 2 days.1 week later same again but this time in hospital for nearly 3 weeks with a raft of tests and scans.
My Myeloma had come back with Bence count up to 2500,plus the news that I have a "rouge" gene which is linked to tuma formation…happy days!:-S
So I have just ended my 4th cycle of PADS treatment.(valcade Bortizombe Dexamethasone) and Bence count is down from 2500 mark to 37 still awaiting last count.
I have been lined up for SCT and all initial tests completed OK.Tomorrow i am due into Hospital for Cyclo priming the build up to the autograph stem cell transplant.If all goes ok end of May they will harvest the stem cells and actual transplant in early June.My consultant has told me they also want me to go for 2nd transplant later in the year called an allo graph as i am young enough for it and its a possible cure/longer remission.
So that's where I am, hope I have not rambled on….if you have any questions please please ask away.I shall go and pack my hospital bag ready.
Stay positive even when those thoughts creep in.
cheers Paul
