Hi again Tony, I am on the trial too, and go up to the Hope clinic, I agree it is much better, and seem to get seen to much quicker! One day we may bump into each other again. I know what you mean about getting tired. Keep well.

Karen x

ps, sorry I typed in the tag box, hope I have no mucked up your thread! K x

Hi Tony, I am 19 months post SCT, I had my last baby injections at begining of July, and I am on 3 monthly clinic visits, mine is 14th August. So we are pretty much the same stage. I still have morphine for back, and 6 weekly Zometta. But I drove for the first time since diagnosis the other day! There are more positives than negatives post SCT…[Read more]

Hi All, not been on for a while and have only just stumbled on this. Very interesting! I live in Oakham, 9 miles (ish) from Melton Mowbray. We live a 2 minute walk from a plastic engineering factory. Twenty years ago I worked for 5 years (North West of England) for Nuclear Electric, catering for workers, labs etc. So I could take my pick from a…[Read more]

Hi Richard, thanks for your reply. Another couple of tips in your reply about attitude and there being no point in feeling guilty. Your are right, but easier said than done sometimes eh?

Also rereading your earlier post, I must also make a point of remaining anonymous.

Regards
Karen

Hi LoisLobann and all. I have not been on for a while so I have only just noticed this. I totally identify with Alpenator’s words about realising this is it, never going to get the old me back. And of feeling guilty, I too feel very very guilty I have inflicted this on my husband, and daughters, they do not deserve it. I am also on a lot of…[Read more]

Hi Tom,
So sorry to hear this, you are always so positive and I am sure your approach to this dreadful MM, will have you back in remission in no time xx 😉

Thinking of you, good luck

Love and best wishes

Karen
xx

Hi Andy

Great that your posting from Greece, we are in need of some sun, as soon as our son finishes his GCSE's we might take off.
Surely there will be a drug that will crack through that stubborn exterior for both of you. There has to be. Chris's pp's are very similar to yours. You say you had a very high plasma % at one stage ? Did that just…[Read more]

Dai

You are a bit of a superstar on here and I'm grateful that you have taken the time to post. Yes we are still reeling from the news and and after hours of looking last week, I stopped trying to find anyone else who had been in this situation because like you say it's pretty unheard of.
You mention about his regime stopping but we ran out of…[Read more]

Hi Mavis,Tom and Eve,
Thank you all for lovely welcome. I am still finding my way around, but I kep popping back on, which is a good sign!:-)

The sun is out today, which always make one feel better.
hope all is well will you all today.

Karen xx

Hi Helen

No nothing daft. Chris was extremely fit until he started chemo in March last year, he ran marathons, did long distance cycle rides etc but since the sct we go for a walk most days couple of miles miles at most and he does gentle exercises to strengthen his weakened muscles at home. He has got a 10 day pass for the local fitness centre…[Read more]

Hi Tom,Megan,San,Mavis, Chris and David

Thanks to you all for taking the time to reply to our plight. We have great friends and family but hearing from people who really know how it feels does lift you and give you strength. Last Tuesday was the worst day we've ever had, and for a couple of days after you wonder if you will ever recover,but you…[Read more]

Hi Wendy

I've been trying to find out about muk 5, Dr Cavet did mention something but to be honest it was a bit of a blur. When Chris goes for bloods on Tuesday he said to call in if we had any questions. But yes that would be an obstacle if we got velcade and knowing our luck we would. How ironic that the drug that worked best for him had to…[Read more]

Hi Carol

Thanks for that, yes it does give us hope.I'm just worried that because Chris has had pretty much everything prior to sct that it won't work this time round. It's strange how his pp's have never been over 40 yet have such high plasma % yet a mm friend of ours had pp's of 70 and only 30% plasma. Anyway it's just numbers isn't it at the…[Read more]

Hi Eve

His neuts are good 3.8, they have been good since he came out of hospital. Platelets 35 still low but slowly climbing. HG 7.8 so low.

No he didn't have a bmb prior to transplant which we didn't realise at the time but now realise that most people do ?? They just went from his pp's and other blood results. Chris is IGG type.

School…[Read more]

Hi Tony,
Just spotted this!
have to quickly reply and agree the staff are great!:-)

take care
Karen
x