Hi Liz & Kev,

From what you have said here and elsewhere it certainly looks as if the medics haven't managed to get on top of the original infection… with different shades of it reappearing and causing these repetitions which are both worrying and inconvenient to say the least.:-P

I have been suffering with C: difficult, a particularly…[Read more]

Hi Keith,

I don't know where to start really…

Yes, you, we, have to press on and try to stay positive while ever the medics offer treatments… CDT may well provide a good bit of breathing space… it worked miracles for me first time round.

I realise the implications of your consultants remarks about your bone marrow but it may well…[Read more]

Hi Lisa and Mick

We have a few on here doing great and not having a SCT and I think the Dr's are nw thinking that its best if we don't have one ? .

I was a bit washed out during my CTD but it came back,not same as I used to be but doing good.
Stay well .

Love Tom Onwards and Upwards xxx

Hello Lisa and Mick

Cdt worked for me did feel low at first after treatment but soon recovered i got 3yrs 6months remission no SCt due to kidney damage had MM for 4 years and have just started velcade so be positive things will get better;-)
Love Jox

Hi Lesley

Its not a walk in the park to be honest BUT it is doable as we say I have had mine since 2008 (ish) CTD then SCT in 2009 and am now Drug free and doing well8-)

Stay fit and take it one day at a time.

Love Tom Onwards and Upwards xx

Hi Megad and of Course Phil

Well Done you two, sat at home as proud as punch and so you should be 😀 .
Now I need to say this first, Now you are home Phil its not all done Please take your time and keep your temp checks regular as it will take you a few more months before you feel the difference, if like me I woke up one morning and knew Just…[Read more]

Hi
Eve
Velcade not so bad if it didnt keep knocking my Hb out 2 units of blood every two weeks bit fed up today as waiting for blood but the clinic forgot to send my sample down until this morning has the cross match done at 2 oclock yesterday!! How is SLim I hope he is doing well and getting stronger and you are getting your lives back together…[Read more]

Hello Deb

welcome and so sorry you have had to join us what a 50th birthday Shock I dont think any of us really get over the shock UCL Is marvellous i am there every three months attenting my local hospital lister in stevenage inbetween UCH is the best as Mathias said 15 mins walk from Kings cross or 10 mins from Euston or the 73 bus which…[Read more]

Hi Sue

How are you,??? Just to let you know,we are thinking about you,do not worry if you cannot reply,everyone understands.Love Eve

Hi Tina

Would agree with Tom,you have along way to go,Slim has the same problem,try sucking sweets helps with moisture ,Slim is getting a bit better,but sometimes he goes to speak,and because his mouth is so dry,he does not make sense.Always carries drinks with him no matter were we go.Eve

Hi Jo

How are things going??? The Velcade is not so bad,just all the hospital visits !!!

Hope you are managing to get out and about,and results going in the right direction Love Eve

Hi Lesley

It is very frightening

when you get that final answer,but we felt after months of not knowing what my husband had a sense of at least we know now,although I did burst in to tears at the doctors surgery anger was the next feeling why did the doctor not listen to me when I told him how ill Slim was,it took another doctor in the…[Read more]

Hi Keith,

I see that you are in tomorrow for bloods, so I'll reserve judgements or advices until you post the results. It seems very early for Bendamustine to Bomb so like the others I'm hoping for a blip. Like Eve says, the consultant is being honest and has put a couple of alternatives on the table. CDT worked miracles for me as a…[Read more]

Hi Keith,

I had my second infusion of Cycle 1 on Monday (infusions on days 1&8) and apart from feeling tired and a little stiff and sore from all the sitting around I am not too bad… but it's early days and I am keeping an eye out for any side-effects that may creep up on the blind side. I still have my appetite and my C: Diff seems to be…[Read more]

Hi Stevo

Its been a long time since I took them and used to take 10 Tabs @ 8 am and another 10 Tabs @ 11 am, was I bad with them ?? Lol I once asked the young bride (elaine) if i was bad on dex? and she just tapped my arm and said "Its over now your better! and walked away ? am sure that means I was Bad lol.

as the Ladies say its like having…[Read more]

Hi Wendy

I do hope its only a blip I have been having velcade last two months as my free light chains were rising if my kidneys had been normal they would have waited a bit longer as pp were only 8 but need to protect whats left of my kidneys so if no other damage they may just moniter you for a bit
good luck for Feb
Love Jo x

hello Stevo

Dexitude is the word I am on 20 day one and 2 and side effects most of the following week but when I was on CDT it was 40mgs four days running hell on earth but it worked and i got 3yrs 6months remission so hang on in there i am on velcade sub Q at the moment once a week so i hope i get a good remisssion from it just starting third…[Read more]

Hi Steve

When are you taking the Dex,should be early in the morning as possible,it did make Slim argumentative,so certain he was right,plus became anxious at my driving luckly he did realise it was the Dex,It gave him a good appetite for a few days,so that was good.
The bad thing about it,is it mask infections,so you have to be careful and…[Read more]

Hi Peter

Well av seen a manky Butchers dog more than once to be fair Ha ha, well you will lose a bit but trust me it will come back with a vengance lol

I hope your Young Bride has a great Birthday and am sure you should be doing something on the 17th that will keep you out of bother.

Catcha Later and Take care

Tom Onwards and Upwards

Not a Problem Lisa hope Hubby (dont know his name? ) is soon better and bear in Mind the treatment and side effects differ from each of us.

Where is Hubby (name) being treated?

Love Tom "Onwards and Upwards xxx