[tmcintyreParticipant]

We’ve had it confirmed that Dave is a non-secretor so although his bloods are now completely clear his bone marrow is showing 50% disease. So fortunate that his GP picked up something in a routine blood test and referred him to Haemotology back in December.  We are disappointed that he hasn’t conformed to the original plan of 4-6 months VTD followed by SCT which is the journey that lots of people follow but we have to remember that we’re not all the same and what works for one might not work for another. Where we used to be quite jolly at appointments thinking we knew how it would all pan out, we now feel uncertain.

However, the doctor said that his new regime of drugs is the right way to go and he is still aiming for SCT. So, 5 cycles of Velcade/Dex (dropped Thalidomide because of Neuropathy) , followed by 2 cycles of  Cyclophosphamide/Dex while waiting for BMB results and now 3 cycles of Revlimid/Ninlaro/Dex with possibly SCT after another BMB.

He is still working 2 mornings a week but his period of phased return to work has to come to an end and he has to decide what happens next. Work cannot offer a part time vacancy and he is not fit enough to go full time. He could be signed off but that will be at 6 months half pay and as we are up in the air about treatment time scales we don’t want to risk being without any income.  Ill health retirement has been suggested and we think that’s the way to go.

Hope everyone is getting on ok.

• This topic was modified 7 years, 3 months ago by  tmcintyre.

[Author]

Posts