MDs

Hi Bernadine 36, I was diagnosed with MDS in March 2015 and as for me I've had treatment twice a week for the first 6 years due to low red cells and for the last 4 years I've had treatment 3 times a week due to a great drop in white cells, more specifically low neutrophils. So my blood levels aren't good and now I've had a great drop in platelets too.

I certainly don't envy you having had AML that's a big worry for me, having to need treatment for that especially as I'm now 67 years of age. I guess you might be a little younger when I look at the numbers in your username. Conversely you may have been born in 1936!! Apologies if I've got that part totally wrong lol!

Interesting that you've had your treatment in Belfast, possibly the City Hospital? All my treatment so far has been in the Ulster Hospital. I was born in Belfast but moved away at the age of 21 once I was married. First to Bangor and six years later to the drumlins of County Down, near to Strangford Lough. 

Maybe you don't need treatment because your blood levels are ok but do you have a 3 monthly appointment or even 6 monthly?

Take care Bernadine 

Tvman x 

I wasn’t able to reply directly, because I wasn’t in the group. Good to hear from you. I think my MDS is chemo induced so not sure what that means for my prognosis 

Sorry Bernadine, I didn't realise that. I've never come across that before. 

As you probably know, MDS is a rare disease and to have someone on the site with it is very unusual and to have a fellow Belfast patient is, well, just wow! 

Today I've to go to the MacMillan unit at the Ulster Hospital for bloods and I'll have a telephone consultation on Thursday. Not sure why I have been asked to go there because I always go to my doctor's surgery to get bloods done so I'm going to ask why at my 2pm appointment. I don't expect to get an answer today so I'll ask whichever doctor on Thursday when I'm speaking to them.

I'll let you know when I find out.

Tvman x

Hi, I joined the MDS UK support group. They are having a zoom meeting on Wednesday. I have come across MDS patients in BCH . I am still being monitored for AML every 6 wks via blood tests that check for genetics

My only symptom is tiredness.
Low white cells I started that after about 4 rounds of chemo and I have had loads of hospital admissions with infections, sometimes twice in one month.  Nivestim and steroids seems to have controlled that.

I have only recently been diagnosed with MDS and Dr said it has been picked up at molecular level. 

I don’t like watch and wait.
Have you asked about any drug trials? I did one for AML but didn’t find it easy. It did get me into remission.

Hi Bernadine, I joined the MDS UK support group before COVID broke out and I had asked for leaflets etc to put into the GP's waiting room and also for the GP to read. I came across an interesting fact that a typical GP will encounter only 1 or 2 MDS patients in their lifetime. Anyway COVID broke out and no surgery wanted to receive any leaflets/booklets for display for obvious reasons. That went on for nearly 2 years and they were still unwilling to take anything. 

When I joined the MDS UK support group there were no zoom meetings but they did then announce that they were going to start zoom meetings but to be honest they were not interested in patients who were under a watch and wait policy so the relevance was zero for me.

No, I haven't asked for any drug trials as the Aranesp and Nivestim are reasonably successful. My Aranesp has been increased by almost a factor of 2 but on the other hand my Nivestim has decreased in strength as the initial strength was successful. However the white cells and neutrophils are dropping again, it's about finding a happy medium. 

Had my bloods done today so I'll find out on Thursday what the latest blood picture is. 

Tvman x