This topic contains 115 replies, has 42 voices, and was last updated by bev2504 9 years, 4 months ago.
Thanks Eliz…That's pleasure for me ! It's so nice to get experiences and ideas from other countries like UK. Have a nice autumn for you !
Mika
Hi Scotty
I have just found out that you we have a mutual friend/colleague. I work at the College of Optometrists and work with Andrew Lane, who I believe used to work with you? Its a small world:)
best regards
Sarah
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
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
Hi Karen
Just got your email that came straight through to my personal email which I was pleased about or I would not have seen it. I had CDT 5 cycles then Revlimid for 4 cycles. I then had my stem cell transplant in September 2011 so I am now post one year. I am now stable although my PPs like to have little blips every now and then which concerns me, but unless I become anaemic again they are not going to do any more treatment. The SCT was a bit of a breeze for me I am pleased to say. Keep an open mind its different for everyone. If you wish to email me my address is chapman863@btinternet.com I wish you all the best Karen. Its a real bummer to get it so young, but we really are the lucky ones for them to find it so early, so that we can be treated. This discussion forum is a wonderfuly place to be. Stick close. Best wishes Kay 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 right direction ..
Thanks again love
Karen
Hi Karen
All the consultants and registrars at Nottingham work very closely together, so it doesn't matter much who you see, but you can express a preference. I generally aim not to see Prof. Russell as I find he can be quite dismissive and abrupt, whereas Jenny Byrne and Cathy Williams are much warmer and will gladly spend time answering questions. So do ask and make use of the specialist nurse, Sarah, too. I think the Prof likes to see all the out-of-towners to start with as he is ultimately responsible for them as Nottingham is the hub hospital for the area, but it may be that afterwards you'll see other consultants.
It's unlikely that I'll see you at clinic, as I now go to the Transplant clinic, which is on Thursdays, not Mondays. This is for people who go through a donor transplant, otherwise you'll be at the Myeloma clinic.
I have nothing but good words to say about the whole team, so you're in good hands. Nottingham Haematology unit is very well respected and I think it has some sort of beacon status for treatment.
Have they suggested any possible dates for you to have the collection of stem cells or transplant? If you want to know more about the SCT process, you're welcome to read my blog, but please don't let it scare you too much. Some people go through the SCT with barely a ripple.
Good luck!
Jet
P.S. This thread is getting quite long and hard to follow, so if you'd like to contact me again you're very welcome, but it might be easier if you comment on my blog.
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
Chris, you have made my week. I look forward to leaving a similar message on a forum somewhere in 2032.
What an absolutely uplifting & inspiring thread !!!
I do hope that other newcomers like myself, whatever their age, manage to locate it & find it as rewarding as I have.
Enormous thanks to everyone who has contributed and of course my very best wishes go out to you all.
Ange
Just bumping this one up so that new Under 50's (or thereabouts!) can get access to the Under 50's site – one bonus of the site is that you can rant and rave if you need to without worrying that the people you are ranting and raving about might read your comments – it is a private site so even those innermost feelings that you don't want your families to read you speaking about, can be talked about with confidence on the site. x
hello Mika, I've just joined the site and read your story. What hope you give, thanks so much. I've had myeloma for five years and have been symptom and drug free for four years now and would be delighted to be around for 20 Year plus.
I had the standard treatment then a stem cell transplant. It hard at the time but when you've got people to live for its not to hard to do.
Hope your still as well,
Take care, Linda
Hi everyone. I spotted the under 50's board and would very much like to join. I was diagnosed with Smouldering Myeloma recently and now just going through the initial stages of acceptance. My father passed away last year aged 75 with Muliple Myeloma, so i am familiar with treatment plans and diagnostic terminology. After further research i am now aware that every case is different. So i just have to remain positive and focus on life. Feel a bit down but hopefully the under 50's will cheer me up with some good banter and info. I am also willing to take part in any fund raising. John
Hi everyone. I spotted the under 50's board and would very much like to join. I was diagnosed with Smouldering Myeloma recently and now just going through the initial stages of acceptance. My father passed away last year aged 75 with Muliple Myeloma, so i am familiar with treatment plans and diagnostic terminology. After further research i am now aware that every case is different. So i just have to remain positive and focus on life. Feel a bit down but hopefully the under 50's will cheer me up with some good banter and info. I am also willing to take part in any fund raising. John
Hi John
Email Phil ::::: phil.kelly2@btinternet.com
And he will send you an invite.
Tom Onwards and Upwards
The topic ‘The Under 50s Group’ is closed to new replies.