Hi there wondering does anyone have else have intermediate level Myelodysplastic syndrome (MDS) with a risk of Acute myeloid leukaemia (AML) ? I’m all new to this started treatment a month ago . I’m pretty scared at times and other times I’m okay . Very strange situation inside my head . The consultant although lovely did bombard me with lots of information . Be good if anyone could help or reassure me . Trying not to Google things as that just freaked me out . Thanks
4 Likes
A great big welcome @Alisoneardley1 to our forum.
I think it is very natural to feel a scaredycat, perhaps you have had a tremendous shock.
I felt the only person in the world in the position I was.
I felt I did not understand medical language.
My thoughts and emotions were on high alert and all over the place.
I expect my consultant said all sorts of things to me, I just could not take anything in apart from Chronic lymphocytic leukaemia (CLL) which I could see in my mind with fluorescent zig zags around them.
That was 20 yrs ago.
Yes, googling personally was not the best idea for me…
Now is your opportunity to write down all your questions for your next appointment.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I hope others on here will be able to share their experiences with similar diagnosis, although we are all unique individuals with our own medical histories.
Personally I would say be really kind to and look after yourself.
Please do keep posting as I look forward to hearing more about you.
4 Likes
I can see @Erica has given a great response and pointed you in the direction of the support line if needs.
I know I initially google everything but found out all that I need to on here.
This is a great place to share how it really is for you with people who understand 
3 Likes
Hi there many thanks for reply . That’s very kind of you and great advice . I will write my questions down and stay off Google .thanks
3 Likes
Hi thanks thanks so much …this does seem a really good site and everyone is really supportive . Many thanks
3 Likes
Good Evening @Alisoneardley1,
Welcome to the forum, I am so glad you found us, I know you will find this a really supportive community.
I quite agree, it can be information overload in the first instance. I would encourage a day by day approach, over time things will make more sense. As Erica kindly mentioned our support line is available and we would be very happy to talk through things with you at any stage so do give us a call if you would find this beneficial. Our number is 0808 208 0888.
For now give yourself time and take good care, Heidi J (Support Services Nurse)
3 Likes
Hi Heidi
Many thanks for your message . This places feels like a safe haven . Whenever I chat to family /friends I’m just upsetting them . Everyone is supportive it’s just it’s hard for them too . Such a massive thing . As you say step at a time . Thanks .I will give the help line a ring . I’m concerned about a few things and feel if I ask the consultant I’m going to feel overwhelmed by the answers again .
Thanks
Alison
2 Likes
Hi @Alisoneardley1 I have found the Blood Cancer UK support line really helpful.
Perhaps write down all you concerns, questions and practicalities first.
As for asking your consultant I reckon it is fine to ask for clarification of anything they say or ask what it means in plain English and either take notes or take someone with you to take notes.
I certainly do not speak medical speak.
Please do let us know how you get on and look after yourself
1 Like
Hi many thanks I’ll give them a ring . They are going to check it’s not gone travelling anywhere with a lumbar puncture at the end of this cycle or some point can’t remember the specifics . Am sure that the targeted chemo is good at sorting things out . Hope is getting it into remission and then maintaining it . Not to mention all the chemo bingo of 5(2) 2 and then in time another drug couple days end of the cycle . Thank goodness there are drugs which work . I realise so many people are in a worse position .Although I already have a neurological disability which by itself is enough to cope with .
Thanks
1 Like
Hi @Alisoneardley1 please do let us know how you are doing, you have a lot going on so please do look after yourself x
You’ll all doing such a great job of being there for people xx
1 Like
Hi Alison
I’m newly diagnosed with high risk Myelodysplastic syndrome (MDS) and also feeling emotional and overwhelmed! I was told on the 4th of July. My local haematologist has referred me to King’s hospital in London. This is because of my age (45yrs) and the fact that I’ve got an unusual genetic mutation ( monosomy 7 and IDH1). I’ve not started any treatments but currently waiting for my siblings to be tested to see if they are matches. The consultant has recommended a stem cell transplant. I’ve also had a second biopsy and are now waiting for the results.
Alison- I was wondering, how are you doing now? And what treatment are you on/doing? Do you have any advice?
Thank you
Claudie
2 Likes
A great big welcome @Claudie and I hope you do not have to wait too long for results and the way forward. Waiting is horrible and I think that I have waited a lot since I was diagnosed 20 yrs ago with another blood cancer.
My thoughts are to perhaps avoid ‘googling’ and be ever so kind to yourself.
Perhaps try and divert your mind and spoil yourself and do nice things
Please do keep posting as I look forward to hearing more about you.
The Blood Cancer UK support line is there for you on 0808 2080 888
1 Like
Hi Claudie
I’m sorry to hear of your recent diagnosis . I’m sure everything is really scary still . It does get a little less scary after a short while . It is a bit of a rollercoaster tho and I’ve had days where I still want to scream ’ just let me get off this thing '. Apart from that it’s a step at a time job.
I’m still on the aza stuff but now added ara c . I’m in the same age range as you but because I have a progressive neurological disability I’m unable to have a stem cell transplant .
The treatment is working ,hopefully it will get the thing from either progressing or in a holding pattern that’s the hope .
So glad you have siblings, I really hope they are a match for you to have the stem cell treatment and that’s a great success .
Message me back and let me know how you are getting on xx take care .
There is everything to be hopeful for
xalison
1 Like