Myelodysplasia

Hi  and welcome to our little corner of the Community.

There have been a few folks over the years pass through this group who had Myelodysplasia and a few going on to have a SCT.

So what are you being told the future journey looks like?

Hi I went to see my consultant on Thurs the 14th Jan and my genetics results were finally back and the news wasn't good I'm in the high risk factor of it turning to AML in fact he basically said I was a walking time bomb and it could change at any minute, so they are going straight for bone marrow transplant.

My brother and sister have both been for blood tests to see if they are a match, but he said that they have already started to look on the donor database as they want to be ready if they are not, it as all been happening so fast and is a lot to take in, he said myself and my partner must be prepared to lose a year out of our lives, I presume that's because of the treatment?

Does that mean I'm not allowed out at all?

Thanks this makes sense.

I attended (Zoom now) our local Maggie’s Centre Monthly Heamatology Support Group and we have someone who was basically in the same position as you and has had her Allo (Donor) SCT (Consultants still tend to call them Bone Marrow Transplants) and is doing great.

I have had two Allo SCTs.... it’s a long story so hit my name to see my profile..... and yes, the recovery can for some be very long but the rewards are great.

Like all the population at the moment we have to be very carful but having a condition like yours makes you very vulnerable so you do need to talk to your GP/Consultant to see if you a classed as Clinically Vulnerable...... I am CV..... but still go out for walks but not into places like shops etc.

Macmillan have a good info book “Understanding donor stem cell transplant (allogeneic)” use the PDF here

You are going to have lots of questions over the weeks and months but we are around to help as best as we can,

Where do you live?

Why hospital are you being see at?

Hi it's very reassuring to talk to some one who as been through the same thing and also that knows of others that have as well, yes I think I am clinically Vulnerable as my immune system is very low even now, so I have already stopped going shopping and just go take the dog for short walks, I live in Leicester and I'm attending the Leicester Royal who have been really great so far, just been again recently for another "Top Up" which is okay but to be fair I feel I'm wasting the donation as I don't get much of an energy boost as all.

You are doing good. The SCT process may take some time especially if they are looking on the National and International donor databases... as when they find a donor there is a set process for them to go through not allowing for the challenges of getting international stem cells into the UK at the moment.

Always open to any questions.

I'm trying to be as normal as possible without becoming paranoid like my key worker says it's so easy to become that as it's human nature. They started to look through the database a while ago even before my siblings were tested as they wanted to be ready should they not be a match or a strong enough one as my consultant wants to get as near o 100% as possible.

Yeah it's strange now with the Covid situation it as such a massive affect on so many things but fingers crossed I will get there, been reading about the SCT and how it's done, all the benefits and risks, also about the treatment before hand and that may have to stay in hospital up to 5 weeks, something I'm not looking forward to :(

Try and not get hung up on the ‘challenging’ parts of the SCT process but focus on this doing a ‘job’ on your condition.

You will see from my profile my journey was rather long..... diagnosed in 1999 with a rather rare and difficult to treat Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”

After years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream

wow that's great news for you I hope I can say that one day as well.

I suppose it's because there is so much information that you are sometimes given that it all becomes so over whelming, I know whatever needs to be done will be and obviously I will undertake what I have to do to stay around and watch my grandbabies all grow up 

Been reading your journey and wow what a big one it was but it helps to see that there is a light at the end of the journey and I plan to walk that road as long as it takes and get to the end :)