I remember you when i first started reading this discussion forum earlier in 2012. What a lovely tribute to a lovely man, and how lucky you were to find each other.
This disease is so awful taking away so many hugely loved people. i hope a cure is found soon.
with love x
p.s. what a devil pinching your bum :)))
Thank you for coming back and updating. i mainly hang out on the uk MM facebook page these days not here, although this is also a wonderful place to be.
I’m glad you’re living your life to the fullest. I’ve retyped a sentence several times, but it doesn’t come out right, so i shall just say, Slim was a lucky man to have you, and we’ve…[Read more]
I think he’s in intensive care, but slowly improving. He’s on Facebook and a member of hte UK myeloma FB suport group, so some information there if you search for him.
lost of people have posted lovely support to him and his partner.
sorry, i should have been clearer – soap and water are top of the list. our hands and faces have never been cleaner!
Philip was told to eat as though he were a pregnant lady, so yes, some foods are avoided. (i’ve told him this does not mean claiming to crave cake and chocolate!)
hi dusk, how are you?
one of the reasons that REvlimid is given in 3:1 week schedules is to give your bloods a week to recover.
My husband is often neutropenic by the end of the cycle. He takes GCSF once a week to boost the blood count. I think it is GCSF but could be something similar – basically growth factor i think – same stuff you take…[Read more]
just a quick post – hubby has been on dex and rev for a year now, back in remission, but staying on for maintenance and suppression purposes- (diagnosed 3 1/2 years ago).
he gets tireder each cycle – saves his energy for what he wants to do, so doesn’t do much excercise – particularly as he got a lot of bone damage.
Our doctor says it’s…[Read more]
I am so sorry to hear this. It breaks my heart to read this. I was just browsing the news section full of hope for new treatments, and then the reality strikes again.
I hope that you can get Colin home as soon as possible, and have some quality time with him, and that he stays infection free for a very long time.
wishing you both…[Read more]
If you are near Redhill have you considered going to Brighton? We see Dr Kevin Boyd there who is excellent. The good thing is that he will happily refer to the Marsden for a 2nd opinion as and when needed so you get 2 for the price of one.
I am sorry nobody has replied. I think your question is a bit broad. The thing with MM is that it is so individual, some sail through, some don’t.
All the places that do SCT seem to be good. And I wish your relative the best of luck.
Best advice: read all you can here in SCT experiences and ask the dictors. Be firm.
For what it’s worth I’d push and ask for an X-ray too on your rib.
It could be nothing or it could be something but either way push.
My husbands had leg pain and had physio. It snapped. A simple X-ray may have prevented the break. Wouldn’t have changed the MM but would have made round 1 treatment simpler to deal with.
No, that’s CVD.
i can understand how hard it is for newcomers to get their heads around this disease and the proliferations of initials doesn’t help. But I think a list of abbreviations somewhere may be easier than everyone spelling it out every time as I think that may get a bit tedious after a while.
Everyone here is so kind I’ve never worried…[Read more]
For us they started retreating at a point after the paraproteins started rising and before they thought it would cause damage. His leg snapped at 30 so they started new regime at 12-15. I guess it’s different for each and another reason why this disease is so individual.
Oh crap. Scuse the language, but so sad to hear this. I’ve decided you can only hear bad news once, so everything else here is just a continuation with intermittent periods of calm.
I hope they get it back under control soon with minimal side effects.