Hi Tony, hope you are keeping well.
I'm Angelina, I've not posted anything on here for almost 3 years now … my husband John has managed to stay in remission till recently so I'm back on here now reading everyones stories.
John was in a bad way for months till he was diagnosed in December 2007 with both MM and Amyloidosis. He was given the CTD treatment and after 6 months he achieved remission (he wasn't expected to survive the 6 months actually as he was so ill). During treatment he was a poor soul, broke 7 vertebrae and his back crumbled. He lost 5 inches in height and 6 stones in weight and wasn't expected to live with everything going wrong for him, kidney damage too with the amyloid deposits. However, against all odds he's still with us after 4 1/2 years.
He has now relapsed for the first time, like yourself. For the past 2-3 months he's been on Velcade with dexamethasone. Last week he fell down the stairs at home, he's been ill in hospital since. The Velcade has caused very bad diahhorea and also nerve damage (not to fingers and toes like thalidomide though) – currently he's not sure when he needs to pass urine, and when he does pass urine he's not sure whether he actually has or not. His consultant has now stopped Velcade. His blood pressure is very low (as is his mood and outlook on life presently).
I met with his consultant a few days ago to discuss the future. If John can get stronger then they want to tackle oral chemotherapy at home (I would like this very much), Revlimid is the tablets they want to start John on when he is feeling fitter and stronger given how much chemotherapy sucks the life from you. I asked about SCT and like you his brothers/sister are not a match, as well as that at age 52 John is considered too old and unfit for such treatment.
I do hope they will start Revlimid very soon, though I have been told th prepare for sudden death?! How on earth do you prepare for a sudden death. I will let you know how he goes, I am very much hoping he gains strength and gets started on something.
Sending best wishes xx
