Dear Paul
Not a club you ever wanted to join but welcome. Do look at Vikki, Chris and most recently Megan's posts about stem cell transplant, they give you lots of information about SCT, in diary format. I had mine 16 months ago and am doing well since. It is a scarey thing to go through, but more about enduring the treatment than anything else…[Read more]

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 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 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 Lesley,

I'm sorry to have to welcome you here… I can't even believe that it's now been nearly 8 months since I was diagnosed. It is a huge huge shock, so give yourself time. It doesn't happen in one day or one week or one month, but you will get used to it and get treated, and you will feel better than you do now (even if you may have to…[Read more]

Gosh Megan and Phil, SUCH GREAT NEWS! Finally home. I haven't logged in for a few days and it's great to be reading about marmite and sofas rather than an IV drip and windowless hospital room. I bet it felt like it would never end… but it has. Similarly I know there will be ups and downs in the next phase, but they will pass too and become…[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 Lisa

Sorry your hubby is not feeling so good and hope he starts to improve soon. When Frank was on CDT for the whole time he had the most horrendous rash in his groin. They tried everything g to get rid of it. It did not go totally away but eased a bit, and then went away when he finished meds. I know it took him some time for him to feel…[Read more]

Hi Wendy

Nearly missed your post!!! It would be easy to say not to worry,but after enjoying so much freedom from MM,it must be very depressing to think you have to start treatment,lets just hope it's a bit of a blip,if you start preparing yourself for it,it will be like livening on a roller coaster,Slim takes the attitude if you cannot change…[Read more]

Hi Daniel

You have come to a good place for information,and you and your dad can be assued people will give you all the help and support they can.

Please get it out of you mind how long,!!! It sounds bad but there is so much treatment these days,as you know it is treatable but alas no cure,it buys time,your dad had a good response first…[Read more]

Hi Deborah

Welcome to a place where no one wants to be I remembered a post of yours some months ago you were smouldering? My husband Frank smouldered for 6 years and in June started six months of CDT and few weeks ago had a stem cell harvest. He's just waiting for a bed for the transplant. As Kerry said it is so hard to get your head round…[Read more]

Hi Sarah Jane

Have you asked for the MM diary. I think it was Ellen (the MM nurse). I find it very very good. It is divided into sections – questions to ask dr Medical terms and a section where you can record all the bloods like Pp neutrophil, white blood count, haemaglobin, kappa light chains etc. I ifnd it very helpful as I can keep a close…[Read more]

Hi Keith

I can understand why you are feeling down and the whole thing must be so tiring ,ask you self how you would feel this time of the year without having MM.most people feel a bit washed out,cold weather rain,and with you the added trips to the hospital,
I would try to look on it as just a blip,we all know how even a cold can effect…[Read more]