Hello Keith,

Early riser this morning so thought I'd pop in and catch up with what's happening, so sorry to hear bendamustine
As not worked for you. Here's hoping that CDT works for you, kevs back in hospital again! Pneumonia which as
Knocked him for six but hopefully turned the corner…[Read more]

Thanks Mavis. I always get pp a month later at next appointment, bit of a pain, tomorrow I finish Cycle 3, but get pp results for Cycle 2 at appointment.

Will see if consultant is happy to give me a printout 🙂

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 Keith

I like everyone else hope that this is a blip and that you get good news from the doctor today. Good luck and keep strong, you have so much support here.

Love Jean x

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 Deborah,

It is all a bit mind blowing at the start, isn't it? So much information to take in. My husband Phil was diagnosed with MM in May at the age of 43 and he was treated on the PADIMAC trial at St Bart's in London. He had six cycles of dex-dox-velcade and last night he returned home after 24 days in hospital for his stem cell…[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 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 Sarah Jane

Good luck with trying to get your blood results. I try to use the Diary, but I seem to have considerable difficulty getting mine. Not helped by the fact that results of PP levels seem to take a fortnight so are never available at Consultations. Am often promised a letter or phone call, but they don't come!

Other results to…[Read more]

Day Twenty Four (Day Twenty) Home

A very frustrating day but Phil is finally home. There was a mix up yesterday and the doctor crossed the anti sick meds off Phil's list of drugs instead of the pill he was taking for his neuropathy. When Phil asked for the anti sick meds he was told he couldn't have them and this took 24 hours to sort out.…[Read more]

Hi Daniel

So sorry your Dad has relapsed. I can understand how worrying this is for you and difficult for you to cope with. I can see why you are asking "how long", but as otheres has said, it is just not possible to say. From what I have seen, not even Consultants can be certain until the very last weeks. Things are so much better and…[Read more]