Hi Andy
Sorry you got such news yesterday !!! But as Dai said u never know each month a new person donates is another chance of u getting a match xx

Keep taking the drugs & an eye on that donor list …

Take care

Regards
Karen

Hi Peter
Really pleased all your tests were good & things are now on the move xx
I went to clinic today expecting to pick up my 6th cycle of drugs but they decided to stop all drugs & I'm just waiting for the phone call to go into hospital for a couple of days to have Hickman Line fitted then large dose of IV Cyclo not sure what happens after…[Read more]

Hi Ange
Pleased treatment started & your ok my love xx
I went to clinic today for general 3 weekly bloods & they have decided not to carry on with cycle 6 !!!! I am now jus waiting for a phone call to have the Hickman line fitted , which means 2 days in hospital & large dose of IV chemo ( the same as the oral version I was taking ) .. Then not…[Read more]

Hi Ange
Thanks for the kind reassuring words
I hope you have managed to get started with cycle 5 ok xx
I will find out tomorrow i(Monday) if I start cycle 6 & what all my results are since the past 3 weeks !!

Hope you get on ok with this cycle & no more infections

Regards
Karen xx

Hi Peter

It's reassuring to hear that some normality returns after the drug cycles are finished …
Really pleased to hear that your SCT treatment has started moving xx their not hanging about !! Which is great , will you be in hospital over Xmas ??

4 million sounds mega hope they get the little blighters !!

Good luck & constant good…[Read more]

Hi again Ange
Thanks for the info , you appear very informative on mm especially since like me you were only diagnosed in August like myself You must do a lot of research ??? & ask lots of questions ..

I'm at the hospital clinic on Monday for bloods etc & to see how things are going .. Fingers crossed all in the right direction xx

Yes the…[Read more]

Hi again Chris
Just been having a long read regarding your SCT .. It sounds very scary !!!! I haven't got a date yet .. Don't know if I should have read it really .. I knew it was going to be a long haul but !!!
Really pleased you are through it & on the road to recovery .. Take care & stay we'll

Regards
Karen

Hi Ange
Thanks for the warm welcome
You sound like you've had a time of it !! , my side effects weren't too bad apart from the days off the Dexi's but this last cycle have been a nightmare . Shakes are horrid & the Wobblies it's like I've had one drink too many , I don't like climbing or coming down the stairs as I feel unsafe .
I began…[Read more]

Hi Andy
Thanks for the warm welcome
Sorry to hear that you are not able to get along with the so called " normal" treatment & I really hope this match works out for you xx

The support on the site is excellent knowing people are reading & following our stories also vice versa ..
Good luck for Monday
Regards

Karen

Hi Liz
Thanks for the welcome & the positive info on Nottingham hospital ..
Sorry to hear your husband has had a relapse & hoping this other treatment kicks in !! . A lady I met in hospital also diagnosed 1day after me is on Revlimid . She doesn't appear to have had any side affects , not like the CTD I'm on . It's quite strange really as she…[Read more]

Hi Chris
Thanks for the warm welcome
Please don't apologise or any guidance you want to share it is greatly appreciated
You are correct in saying that unless I ask questions the medical staff don't seem to tell me much , I do ask my regular numbers .. Haemoglobin , GFR, Light Chains & neutrophils & compare them every 3 weeks . Saying that…[Read more]

Hi David
Thanks for the welcome , knowing people know what I'm on about does help !!!
I just want to put it out of my mind for a few hours a day !! Just so as to have a bit of normality but easier said than done .
Are you or have you had treatment ??

Regards
Karen

Hi Yom

It's great your so so possotive , I had a dreadful day yesterday !! Very depressed & dark mood .. 🙁
I have sent you a friend request on FB , it looks like you 🙂 you will have to check

I'm realy gonna try & kick my butt today

Regards
Karen

Hi Tom
Thanks for the info , the Mushy brain (chemo brain) 🙂 is right old pain in the Butt !!!!! . I was admitted with sickness , weightless , generally being unwell & the dreaded cough , also my kidneys are affected but light chains have gone down from 14,600 to 80.2 so hopefully something is going the right way .. The cough does worry me…[Read more]

Hi Alex
Thanks for your reply both diagnosed at the same time !! .. I don't understand what "pad" Is I'm on CTD trial also my 5th cycle .. Like you I wish I could go just one day without thinking about the bloomin Myeloma !!!! .. I get lots off dark thoughts & have a tendency for pushing people away , which I know is spiteing myself ,
Are u…[Read more]

Hi Jet
Thanks for the comforting reassurance . No not given a date yet for SCT , I go to clinic next Monday 26th nov & ill either start my last cycle or ??? .. My main worry is infection & neutrophils afterwards !!! …
Just off to the dentist as my teeth are rubbish since been on the CTD

Take care & thanx
Karen xx

Thank you all x x

Hi Kay
Thanks for the reassurance , I'm so nervous about the SCT or should I say the neutraphils & infection afterward !!!! Just hope I'm as lucky as you and it goes like a breeze …. I'm always anti-bacterial everything down now so goodness knows what what I will be like after . Up until now all my numbers appear to have been going in the…[Read more]

Hi Ali

Really pleased with your good news bout your mum 🙂 . I liked Proff Russell when I met him , straight to the point & no beating about the bush !! ..
Just waiting for date for SCT then off we go

Regards
Karen x x

Pleased to here the hospital is fab but didn't realy expect it not to be . Thank you for putting my mind at ease x x x
Regards
Karen