New Diagnosis MDS MLD East Midlands

Morning! I've been recently diagnosed with this unwelcome acronym, early stage, watch and wait status so no active treatment at the moment, which is somewhat of a relief at 59. However, if there is anyone who is also in this position, with this seemingly rare cancer, who would like to travel together, that would be great....

  • Hi and welcome to the Community, there are a number of folks who have MDS posted in the group so let’s look for them to pick up on your post.

    You can put MDS in the search tool Mag near the top and see all their posts and as always you can hit reply and see if they are still looking in.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • I was diagnosed around 3 months ago, same age as you, my treatment starts in September, feeling okay at the moment, lots more tests to do yet, being looked after really well. 

  • Hi, West Norfolk here, newly diagnosed with MDS earlier in July 2021.It is recent illness for my blood results of 1 year ago showed no sign of cancer. I have day patient chemo starting with Azacitadine injection mid August..

    I dont like to think of where this is heading for me.

  • Hello 

    my partner has been on watch at wait MDS cancer he’s 61 for 10 months. Currently having twice weekly platelet transfusions after a bleed on his eye. Waiting for a second bone marrow biopsy result to see if there’s been any change. 

  • Here’s wishing you all the best for your treatment. My partner has had MDS undiagnosed for 9’years. 
    ( a complicated story) but now waiting for his 2nd bone marrow biopsy results to see if anything has changed. 
    he’s lost two half stone. Weighs 9 stone and eats and drinks very little. Sleeps a lot. Not had any treatment so far. 

  • Hya, I'm the same, waiting for the same injections to start with venetoclax tablets, both for a week then 3 weeks off repeated for 3 months. Then I'm having a bone marrow transplant. Good luck with yours, hope it goes well

  • Hello, thanks for the reply, my Doctor has commenced the paperwork process for a possible bone marrow transplant. I am expecting more information at Doctors clinic tommorrow.

  • Seeems like both have been through a lot. I am apprehensive about how this is going to change me, such as weight loss , energy etc, can only wait and see. Best Wishes to you both.

  • Hi  I just noticed that you may be heading down the Stem Cell Transplant path - Consultants still tend to call this Bone Marrow Transplant.

    We do actually have a dedicated Stem cell transplant support group where you can talk with others from many blood cancer types who have walked the walk as Stem Cell Transplant is basically the same process regardless the type of Blood Cancer you have and for my rare type of NHL I had two Allo (donor) Stem Cell Transplants in 2014 then 2015.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile