[VickiParticipant]

Ann, that would be great. It's good to know there are others out there with the same concerns!

This forum along with the medical teams can keep us buoyed up:-)

Vicki

[VickiParticipant]

Hi Ann,thanks so much for this. Funny but Colin loves his golf too-before the lower back pain!,

I know what you mean about the tablets and feel the same as you-guilty about posting but all the same exhausted from the worry of it. I only discovered this site yesterday and plucked up the courage to put something on today. I read a lot of the posts beforehand and considering I'd never heard of the condition it seems more common than I realised! We were really nervous about the treatment-I still am but Colin is being so positive.

We've had some real ups and downs. One thing I realise now is don't read the Internet-very frightening. Fingers crossed for you and Peter….and all those with this condition. No expert but happy to share experiences!

Vicki & Colin

[VickiParticipant]

Hi, thanks for your reply.:-)

Colin is currently on a 3 weekly cycle of cyclophosmahide. (sorry about spelling!), dexamethasone and revlimid (lenolidomide) with the various extras of bone protection, stomach protection etc. We can't really see a pattern on the good & bad days although the steroids make him a bit hyper.

we know this is an individual condition….. The pp started at 17.

The SCt won't happen until treatment response levels out? I

Hope you are feeling good today.

I didn't think that this would happen to us but certainly it puts life in perspective!!

Vicki

[Author]

Posts