Hi all,
Just wondering if there’s any others here with experience of MDS/MPN Overlap Syndromes.
i was first seen for this condition at the start of the pandemic, however, as it is so rare it took 3 bone marrow biopsies to get a diagnosis.
My biggest worry at the moment is the possibility of neutropenic sepsis, which I’ve had to be admitted for twice and that sure isn’t fun, however, I am always in fear of that day where I hear that my disease has ‘progressed’ after one of my 2 weekly blood tests.
Also does anyone know of any specific charities that may be able to help me out at this has really taken a toll on my finances and being able to look after my family.
Thanks for your help and advice!
Hi Fruitbat100 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 years old with another rare type of blood cancer reaching Stage 4a in late 2013 so I do know this journey rather well although. i have been hospitalised on a few occasions with Neutropenic Sepsis....... and I agree it's not fun. Let’s look for any of the group members to pick up on your post.
You may 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 Groups most are online at the moment….. the one I attend does have a few folks with MDS in it so worth checking.
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..... and more specifically a benefits/financial guidance service.
You may also want to check out MDS PatIent Support UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
