[KesParticipant]

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

[KesParticipant]

Thank you all x x

[KesParticipant]

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 right direction ..

Thanks again love
Karen

[KesParticipant]

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

[KesParticipant]

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

[KesParticipant]

Good luck with your up coming treatment love

Regards
Karen

[KesParticipant]

Hi Jet
I live in Lincolnshire but will be having my SCT at Nottingham . I have already met Proff Rusell ,, did you see him ???
I am on CTD of the trial at the mo cycle 5

Good luck
Regards
Karen x

[KesParticipant]

Hi Kay
I too am new to the site , I have been chatting on the other pages until someone mentioned the under 50s ..
I am 48 & was officially diagnosed August 1st this year just over 4 months ago . I was totally devastated. After being ill for quite some time , vomiting , weight loss , very very tired , headaches & a general unwell feeling .. The GP missed it for months , I ended up being taken to A&E by ambulance ..
I am on cycle 5 of CTD Trial & am down to have the SCT

How far on are you in your treatment etc etc ??

Regards
Karen

[KesParticipant]

Hi Mavis
Thank you for welcoming me to the site forum , yes I am on trial X1 so will be having SCT if all goes to plan .. It will be carried out at Nottingham general hospital as our local hospital isn't equipped (LincolnCounty)

My main problems at the mo are aches and pains mainly in my ribs , & the tremors my whole body shakes , typing is a nightmare & holding a cup !!! the problems only appear to have become more so in the last couple of weeks .. Also my brain doesn't function proper , much less concentration & I can never remember anything !! . I feel weak & wobbly wobbly .. I'm presuming most of this is the Thalidomide ?? I'm currently on 150 mg each evening ..

Thank you again

Regards
Karen

[KesParticipant]

Hi Dai
Thanks for your reply . I much appreciate all advice & info given .
I too wish I wasn't a member of this forum but I am & I'm glad I found it !! . It helps to know other people know what I'm talking about even though I wish they didn't xx

Regards
Karen

[KesParticipant]

Hi Peter
Really pleased all went well with the CTD , all my numbers appear to be going in the right direction , keep seeing this PP ???? I'm presuming its Paraprotien ?? I don't know anything about this !!!! ? That will be a question for my nurse .
When I was first diagnosed my Light Chains were 14,600 but at last check had reduced to 80.2 .
I've had 1 blood transfusion as I became quite anaemic .
I met Proff Russell at my local hospital Lincoln .. he works at (Nottingham General hospital) few weeks ago about SCT. & he wanted to get me in before Xmas which meant I too would be in at Xmas but the consultant said he wanted me to have 1 or 2 more cycles as I'd only had 4 … So don't know what's happening at the mo !!

Have you had your Hickman line fitted yet ??
Good luck with all & hope the SCT gets moving ASAP

Regards
Karen

[KesParticipant]

Dear Eva
Thank you so much for your long & informative reply it was very interesting to read …. You sound like your getting on with things now & that's great .

I will try set myself goals but its making myself do it that's the main problem !!!

Have a good weekend

Regards
Karen

[KesParticipant]

Thank you
For your reply , yes mm does take over my thoughts . I do have a husband but he but he doesn't really understand what's going on , he's not a big reader so hasn't read the literature !!! Only what I explain to him ,
I'm a very private person so not got many close friends (I sound a right saddo) , I spend a lot of time on my own !! , like I said I don't feel safe to drive as very shaky & my brain is like mush also I too have noticed my eyesight as changed .

What is your treatment now that you have finished your cycles ???

Regards
Karen

[KesParticipant]

Hi Alison
Thanks for kind words , yes I've spoken to the Dr & he gave me some medication
I feel shaky & light headed most of the time
Did you have the SCT ??? .

Ps …. Ya not rambling 🙂

Karen

[Author]

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