Hello Keeta and welcome to the forum. 

I'm sorry to hear that you were recently diagnosed with MDS. I think lots of our members here will understand how frightening the "not knowing" can be. 

I've had a look through the forum and I can see that one of our members [@Dafra]‍ post about how her Dr's incidentally found her diagnosis of MDS in this post. As I've tagged her into this post she may pop by to say Hello! 

We do have some information on our website here about MDS which may be of interest to you. I also wanted to tell you and the MDS UK Patient Support Group. I can see from their website that they have an online forum and I'm sure that you will be able to connect with others who have the same diganosis there. 

And of course you're welcome to call our team of nurses for some support and information if you would like to. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I do hope that some of this helps and that you find the support you're looking for. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Kathy

Not sure if I can be of much help. I understand that MDS covers a wide spectrum of blood disorders.  As we get older we seem to have a predilection for it. I am 73. Now only my platelets are down (the negative of your condition) and am classified as a low risk of development. So I have regular blood counts to monitor the progression and so far the disease seems fairly indolent. The diagnoses was made after a bone marrow biopsy which maybe you have had (a very nauseating pain in my experience). My only symptoms seem to be tiredness and a tendency to take ages to stop bleeding from minor cuts. If it is found my condition is deteriorating  I may be offered a bone marrow transplant but my age is against me. 

Tomorrow I am seeing the haemotologist for my regular monitor and hopefully my readings will have levelled out. I'll let you know the outcome. 

My GP originally had put me on regular B12 injections and the associated FBC results led her to refer me to haemotology. 

Sorry I can't give you any more information other than my own experience. 

Go for the second opinion if you are not happy or don't have full understanding. It should help. I don't really understand what the life expectancy percentages mean but with my melanoma, my consultant was very wary of giving me a figure to worry about and warned me against too much googling. I feel quite positive about my health now and although I'm a shadow of my precancer self with bits of my body in various levels of wear and pain, I feel happy each day for surviving. 

I hope you will get all the information you need and there will be nothing to worry about. You are right, not knowing is worse. 

Kind regards,

David

Hi David .

Thank you so much for your reply, i think i will feel better after i have a second opinion, my next app ia on the 9th March.i haveseen this other Haematologist before i was diagnosed  and he explains everything, whereass  my Haematologist makes me uneasy as she says "I THINK"all the time and talks to you as she looks at her screen.

I am on my second lot of injections for my red bloods and it did help last time , but the other cells remain low.

You say that if your  condition deteriorates you may be offered a transplant, i don,t think you are offered one in the UK if you are older than 60-65.

Yes please let me know how you get on in your next app,

Take care Kathy

Hi Kathy

Yes there is a lot of uncertainty when diagnosing. It was only after the bone marrow biopsy that my condition was confirmed. I was made to understand I was too old to be offered a transplant under 'normal' circumstances but it was not ruled entirely out.

My cousin had a variety of MDS and only died two years ago after having it for at least 15 years. He was 80 and only had a rough time in the last 6 months with infections. Even then he never ever suffered much.

I get B12 injections every 3 months, not for MDS of course.  I don't think they do much for the tiredness but I'm happy to continue on doctor's advice. 

I go on Tuesday for my hospital review. I've asked the GP to phone when I'm there to see if I can combine surgery and hospital bloods. It just seems pointless having it done twice each time especially as I'm so mean in providing. 

I'll see what Tuesday brings. Hope you can say what happens on the 9th. PM me if you don't want to go public. 

You take care too. 

David

Hi Kathy

Good day at hospital.  Bloods were stable, just a slight reduction in platelets. So return appointment in three months. GP phoned when at haemotology so arranged B12 bloods at same time as MDS. This is great for me as I have curly blood vessels which give the plebologist headaches. 

Hope your 9th appointment is good.  

Regards David