Hi Maria

welcome to the forum not a place you would have wanted to join its always a big shock to all of us the question is why me nobody seems to know that sort of makes it worse it seems most of us here were fairly fit and active
you will have some knowledge about the illness as you have worked in the enviroment but I dont suppose it…[Read more]

hI sCOTT

just completed the last of four Velcade injections got a week off not been too bad on it yet but not had a result yet to see if its working how are you on the bendamustamine manageing ok?
Regards Jo:-)

Keep going Andy
my docs have kept me going for the last 4 years no SCT on the velcade trail now just keep hoping for any new treatments I have dodgy kidneys like Scott so as tom sort of says onwards and onwards! Chin Up
lOVE jO X;-)

Hi Andy

this is such good news I worry about all my cyber friends and how they get on keep up the good work hopefully you are on the right track now:-)
Love Jo x

hello David
so glad your anniversery party went well very best wishes to you and your wife:-)
Love Jo x

hello Sarah
I had a small dose of thalidomide 50mgs for a year after was ok with that then 2years 6months free from myeloma drugs had to take some tablets for the kidneys but nothing else hope this helps
Love Jo x

Hello SArah

I didnt have an SCT due to kidney damage I had cdt and achieved 3yrs 6 month remission just started on velcade there are lots of ongoing treatments:-) so it not all doom and gloom so I hope your mum keeps well on the treatments so keep your chin up good luck to mum
Love JO

Hello Eve

I really hope you and slim have a brilliant holiday hope you both keep well and looking forward to hearing your holiday tails
Love Jo x

Hello Jean

sorry Frank is feeling sick it could of course be a winter sickness bug and not the CDT its probably hard to tell but he hasnt felt sick before has he perhaps a quick call to the clinic will sort it out
Love Jo x

good luck Keith

I really hope this new regime works for you it sounds a good drug there seems to be even more on the way from America so watch this space they said to me if VCT doesnt work they even revisit CDT as it worked well last time! finished the first four shots today week off next week;-) yippee had to have 2 units of blood as as Hb…[Read more]

hi Colin

not sure what all that maens why dont you give Ellen a ring she is very good and may be able to explain it to you the doctors dont always do that I think they should
Regards Jo x

Hi Keith

I hope this works for you when i was at the MM info day in London they were talking about third and fourth sct i wonder if you could get a referal to to Kings or Uch it was the consultants from there that suggested it they also prescribe drugs from the Rare cancer fund if needed
which included pomalidamide
Regards Jo

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 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]

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 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