Thanks to all for the replies,
@ Cassidy thanks for sharing – I almost feel guilty for not being in more pain! But it’s also hard to square my relative good health right now (Kidneys are in the normal territory right now) against such a poor prognosis. And the silver lining in all this for me has been spending more time with the family as I’m off work. My wife in particular who is being fantastic. And learning to say “yes” when people offer to help.
It helps I think that I only take steroids twice a week. I had a real hard time getting of Prednisolone a few years back for an unrelated ailment. The reaction to the drugs seems as individual as the disease.
@ Shaun. Many thanks. I’ll go through your link and have a good read. I too have done some research and as I read it the consensus view is ASCT will not be needed in the future but right now it’s the best hope for deeper remission if you can take it. There is some debate about double, some US Oncoligist feel it’s not needed – but more do. Indeed the last thing I read was an Oncologist saying dual should be default for high risk and recommended for medium risk.
All the sites have agendas so it’s important to me to bear this in mind when reading. I’m sure you are already all to aware of this.
One thing that strikes me about all the research is that it’s all based on very small numbers of patients – would such small numbers be acceptable for more common conditions?
Oh and my consultant is a “Myeloma guy”, and his last letter states that HE consulted the Myeloma lead for the region about my case, in effect getting a second opinion for me.
@ David thanks for the good wishes – doing a fair amount of walking and eating like a horse at the moment!
As I say, due to meet Transplant team later in the month, so I might report back in then.
I truly appreciate all the replies it’s great to hear other stories happy and sad to get a sense of balance.
Cheers,
Brendan.
