hi Kieth

good luck with the BMB i hate them i suppose its parr for the course but i hope its good news for you and they can sort you out to get a bit of normal life I have just started Velcade had 3yrs 6mths remission from CDT hope i get a good one from velcade
love Jo x

Hello Carol

sorry about the relapse I havnt had an SCT but have just started treatment after a 3year 6month remission its a bit of a b***mmer for us we know it will happen but always hope it wont I have started VCT had two injections already with cyclo and the dreaded DEX but only 20mgs two days running last time i was on 40mgs four days…[Read more]

Hi Debs
How did the ball go? And was your trip to china a success? I'm interested to hear how you got on?
Love Helen

Hi Pat

hope you are feeling ok today had a very interesting time at the MM day in London had major speakers from the medical world there was a lot of talk about new treatments which was encourageing we paid £20 for the day there was a nice lunch and really the chance to talk to others in the same boat some people have had MM for twenty years…[Read more]

Hi Phil

This disease has no normality,so one persons story,has no baring on your,s,my husbands neuts and platelets took a long time to become stable.The thing they look for is,although the neuts dip,they look for a little gain each time,my husbands went down to o.3 when he was taken back in,he is now 6 months on and plates are 84 should be…[Read more]

Dear Sue
I'm sorry to hear about Michael, it must be so hard for you all. I do hope you have lots of support at home and can make the most of your time. love Helen

Hi Jean and Phil
I'd love to give the cough it's marching orders but its still here, slowly getting better, I think I'm just one of those people who takes longer to get better for some reason, very annoying but nothing I can do about it.
And thanks Phil yes I have had my flu jab, in view of the number of infections I've had there was no choice…[Read more]

Hi Chris
You seem to be quite upbeat now, hope you get out soon. I got out 14 days after the stem cells went back, i still felt dreadful but so much happier as you say, with all my own stuff around me. Carry on in this direction, can't be long now.
Love Helen

Hi Tina
Good to hear you are home at last. Just have to take each day steadily now, lots of rest, gentle exercise and all you can eat and drink. Don't try to push yourself too much, your body has to do some serious mending now.
Love Helen

Dear Vikki
Just hang on in there for a few days more, you will soon get Colin home then he'll be all grumpy and impatient that he's not getting better fast enough for himself.:-P :-/ It can take a long ……. slow……. time as Tina is currently finding.
Love Helen

Dear Jo
Sorry to hear about your relapse, but good that you are still so supportive and still getting your hair done. Hope the velcade works well.
Love Helen

Dear Emma
Taking temp every day when on the chemo is one thing I found vital, you need early warnings as you feel quite rough anyway.
The Newcastle support group meets on Monday, the details are on the web site here, might be of use?
Love Helen

Thanks wendy for your kind thoughts i do have a good medical team at the Lister and UCH
Love Jo x

Well Dia

who knows what is the right course i made my mind up not to go for a SCT it was discussed but i didnt want to finish my kidneys off completely as it happened it has not worked out too badly so i do hope i get the same responce this time thank you for your kind wishes:-)
Love and a hug from Jo xx

Hi Sue
If it is any help Sue,Slim had panic attacks when in ITU,and of course I was not there,and I was there 20hrs out of 24.made me feel awful,but he did say to me they were bad dreams,and we did talk about them after he came home.

So glad to hear he is coming home,make time just for you and Michael,you will need all your strength in the…[Read more]

Hi Emma
Glad to hear your mum is feeling better,there is so much to learn when starting treatment,so it is a big learning curve.:-)

When your mum starts treatment everything will be explained,about tablets when to take them and the best times,there are a lot of tablets so go out and buy a pill box,and make a chart makes life easier.

Kidneys…[Read more]

Hi Pat
I have a reduced regime because of the kidney failure i cannot have full strength drugs it worked ok for me last time so hears hoping it will now
my lovely husband takes me every where and waits for me took me this afternoon to my friend sons saloon she arranged for me to have a free manicure which was lovely had the hair done felt much…[Read more]

Hi Scott

I am coping ok at the moment with velcade only once a week SubQ and a reduced dose of dex and cyclo because of the kidneys they started me early
as i was producing heavy light chains which damaged my kidneys in the first place they are still hanging on how are yours coping with the new teatment i am nto giving up going to th MM…[Read more]

Hi Mavis
thank you for thinking of me not doing to badly plenty of hospital visits but i try to carry on life as normal dont like to give up just take a bit more care not get colds etc
Love Jo x

hi Dia
thanks for noticeing me I had 3years 6months remission from CDT so i didnt do too badly my PP were only 9 they usually dont start treatment until you get to 30 but i was creating heavy light chains again which destroyed my kidneys in the first place so they started early the regime is not to bad
20mgs of dex and 200mgs of cyclo day one…[Read more]