New to the group today with this rare type of cancer diagnosed since last October.
I've been on hrdroxycarbomide since then with double dose for three out of seven days.
Feeling fatigue and starting to get pins and needles in hands and feet, which is new for me, but I gather a normal side effect of my condition.
Would happily chat with anyone who shares this diagnosis.
Thanks.
Gracemead
Hi Gracemead and welcome to this corner of the Community but sorry to hear about your diagnosis.
I am Mike and I help out around our blood cancer groups.
I don't have MDS but for some context I have been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer…… navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.
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.
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Group….. the one I attend does have a few folks with MDS in it so worth checking.
As always 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, benefits/financial guidance or just a listening ear.
You may also want to check out MDS Support UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
