ICUS progressing to MDS

Hi AlaLady and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.

I don't have MDS but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL then in late 2013 a more aggressive type of NHL came along with me now reaching Stage 4a so although my Blood Cancer ‘type’ is very different but I do appreciate the challenges of this journey rather well.

So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.

You may also want to check out https://mdspatientsupport.org.uk for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Hi AlaLady, I'm tvman and I have MDS. I haven't been around for a while because my wife was diagnosed with rectal cancer 14 months ago and is now coming to the end of her treatment next week but there are complications and we're both at A&E currently. 

Good to see that my good friend Thehighlander has contacted you.

I was diagnosed with MDS in March 2015 and I've been having a weekly injection since then to encourage my bone marrow to produce more red blood cells. Just recently my white cells have dropped a lot and I'm now on another weekly injection to encourage my bone marrow to produce more white cells! My platelets have also dropped but no word of treatment yet for that. 

MDS covers a few incurable bone marrow conditions and of course I hope that yours is treatable too. It's true that MDS can progress to Acute Myeloid Leukemia but you will be very unlucky to go down that road. Try to stay in a positive frame of mind. 

There is a support group for MDS patients that I belong to and you'll get reams of information from them, all up to date treatments etc which I find very useful. Just Google MDS support group and you'll find it easily. It's easy to join.

Good luck AlaLady with your journey and I look forward to chatting with you again. Take care.

Tvman