Hi new here

Hi kc23 and welcome to this corner of the Community although I am always sorry to read about the journey you are on. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well although not the specific details of CML

CML is on the rare side, but let’s look for any group members to pick up on your post and get back to you.

I see that you have put up a reply to one post so again let’s see if the folks are still using the site

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

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 Groups….. the one I attend does have a person with CML in it so worth checking.

Always around to help more or just to chat

Hi This is my first visit to the Forum so hope I am commenting in the correct place, someone put me right if I'm not! 

Recently diagnosed with CML and going through the usual phases of denial before arriving at acceptance and the long climb back to normality, whatever that ends up like? At the moment I am on 200mg Imatinib, I was on 400 for a sort time but came out in a rash so reduced to 200. Currently experiencing breathlessness which I find quite frightening as I had a very healthy and active lifestyle, no golf, winter walks or exercises at the moment. Be interested to hear if other people have experienced similar symptoms. 

Loss of taste, sadly don't like red wine now, and certain foods are not enjoyable. Has anyone created or discovered tasty recipes for CML sufferer's? Be interested to know this before I start searching out and trying recipes myself.