Hi Beckie,
MDS is certainly rare in someone so young, I’m 75 and like yourself I had difficulty being diagnosed, I spent most of my savings on private tests and consultations on a private basis.
I’m too old for a stem cell transplant.
My treatment is the drug Azacitidine which is administered 5 days in every 28, I start my 65th monthly cycle 6/1/2020.
I’ve been having this treatment since January 2015.
The only effect MDS is having on me is fatigue which the drug increases for some days after each cycle.
My social life is non existent as I have to be careful to avoid any forms of infection.
There are several different versions of the disease, have you been given details of of your exact diagnosis?
I have Refractory Anaemia with Excess Blasts, RAEB2.
Because I was diagnosed privately I probably got mor information at that time, the same haematologist is treating me on the NHS.
I’m surprised that you weren’t told your treatment options at diagnosis, but that’s the NHS for you.
I’ve spoken to some of the other patients on my cycle week on the same medication and they seem unaware of exactly what they have got.
At your next appointment ask exactly what form of MDS you have and what treatment options are being offered, be pushy, my haematologist is very forthcoming but I think she is an exception.
I question all aspects of my treatment, you will have to as well!!
You’re very young and should be considered a good candidate for Stem Cell Transplant.
Get in touch with MDS Support online and get more information on the disease, they produce a booklet which covers all aspects in great detail.
Good. Luck and best wishes for the New Year
Let me know how you get on?
Anthony
Hi Anthony, It is good to see you pop in again, and thank you for your help. I hope you are getting on okay with your new counsellor and that you have a peaceful Christmas and New Year. Best wishes, Louise
We co-produced a booklet with MDS Support UK & Leukaemia Care which you can order or download here https://bloodwise.org.uk/info-support/patient-information-publications, it should (we hope) be a good source of information. It’s free of charge, and we’re here if you want to talk anything through.
@Blackhat Wonderful to hear from you and for you to share your experience, I hope you’re keeping well.
Dear Dawn and Louise,
Thank you for your replies.
I had 6 sessions with new councillor, pity they had to end I had a very good experience with her.
She surprised me in one session suggesting I had a spliff to relax in the evening.
For a moment I wondered if she was a dealer!!
It’s far stronger than the stuff I used to smoke years ago so it’s a no no I’m afraid, nice thought though.
A very happy Christmas Day to you both and a good new year.
Cycle 66 of Azacitidine on 6/1, I’m aiming for 100
Anthony
Hi Blackhat, great to hear from you, I often think of you. Thanks so much for helping @mozza1, it really shows the value of our community forum. Your counsellors suggestion was very ‘interesting’ and highly unethical. Luckily you know how the composition and strength of cannabis has changed since our misspent youth days !!! Let’s hope 2020 is a better, healthier year for us all. Have you got a Santa hat?
Thanks Erica,
I didn’t think her suggestion was unethical, it was said in a humorous context.
I enjoyed my sessions with her greatly, I felt relaxed in her company and we covered many aspects of my past together which included dope smoking which probably prompted her to mention having a spliff.
Ps
It wasn’t just in my youth that I smoked cannabis, I did so when my marriage ended in 2005 and up to 2012 when I stopped as I started to feel the symptoms of the early onset of MDS which wasn’t diagnosed until 2014.
I was single again but I didn’t sit around moping I went out looking for fun, parties and clubs etc. I enjoyed myself immensely, admittedly at a slower pace.
I’d do it all over again if I could.
PPS haven’t got a Santa hat but I did buy a maroon fedora recently
Best wishes and happy Christmas to you
Anthony
A maroon fedora sounds very classy!
Hi Blackhat, did you see our mate Alfie has posted under ‘Down but not yet out’?
The maroon Fedora sounds very snazzy to me.
Hi everyone,
I hope you are well, thank you all so much for sharing your experiences 
@Bav.BloodCancerUK and I also came across Leah’s story, which you can read more about here: https://www.telegraph.co.uk/christmas/2020/01/24/didnt-doctors-take-leukaemia-symptoms-seriously/
Is there anything in Leah’s experience you can relate to?
It has been great to hear from you all, please do feel free to keep on sharing 
Su