Hi Scott

glad you are doing ok on the Bendamustine as we are both in trouble with our kidneys i wonderd how yours are reacting to this treatment because it might be for me down the line
keep well
Love Jo xxx

hello Tom
i am sorry you have had to join us but you will find much help and advice here I havnt had any of these treatments or a sct I had CDT with 3yr and 6month remission have just started on velcade i chose not to have an SCT as my kidneys were very damaged and i didnt want to finish them off completely with the heavy chemo needed
Stay well jo:-)

Well
Dia
here we go again I think Scott is doing ok on this regime and Keith has just started they said this might be an option for me next if velcade doesnt work not thinking about that yet:-P what you really need is a break from meds lets hope this comes soon there have been really good reports about it its not a new drug its been used for…[Read more]

well Tom
🙂
HAPPY BIRTHDAY TO YOUR CELLS AND MANY MORE TO COME WHAT SAY SAY YOU
lOVE TO ELAINE AND YOU:-) lOVE jO X

Babs
Sorry to hear you are suffering side-effects. I too am on Revlimid and Vorinostat, everything okay at the moment but I am only on day 5 of my maintenance regime so just a couple of weeks behind you. Handy to know someone on the same treatment plan and at a similar stage though, I'll let you know if and when owt goes wrong with me.
Graham

I did enjoy it Dia I think you should get these poems in a book i think they are lovely
Love Jo xx;-) 🙂 😀

Hi Teds

I make heavy light chains which is an indicater of MM being on the move I have started velcade as my light chains had shot up it was the light chains that helped damage my kidney so its omportant they keep a good eye on it you may be ok but it might be a good thing the doctor wants to see you early
Keep well
Love Jo x

Hi Keith
I am glad you are feeling well at the moment the bloods do seem strange my hb fluctuates between 9.5 and just recently 7.5 i think this much to do with my dodgy kidneys but has been worse since starting velcade Do they think you might get back to normal any time soon i hope this is not it! had my week off from velcade last week and felt…[Read more]

Hi Sarah and Henry

what a tale I really wonder what will happen to some of us in the NHS systems so much laxness and uncaring attitudes make me shudder poor Henry I wonder if he is doing a bit too much working all thosr hours perhaps thats why he has been so open to infection getting a bit run down I hope he feels much better soon
Love Jo x

Loved it dia more please
Love Jo xx

Sounds wonderful Eve

so glad you got there and all is well take it easy and enjoy all that comes along the sun and the sea will do you both good
Love Jo x

Well Dia

C diff lite what ever next seems a pig a of a bug to take this length of time to be rid of it I hope they see sense and keep you on the rev dex combo "sounds like a good group!" a friend in my support group has been on this regime for over four years the last 6 month has been rev alone she also has to take something for loose bowls…[Read more]

All good news Etta

hope it stays that way have a good holiday christmas and new year
Love Jo x

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