Hello

Hi Contigo and welcome to this corner of the Community although I am always sorry to read about your diagnosis. 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.

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. You can also click on the main ‘CML 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.

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 or via Webchat and Email too. 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 some are in person but others are online….. the one I attend does have a person with CML in it so worth checking.

Always around to help more or just to chat

Hello and welcome to the world of CML.

I was diagnosed in February 2022 and have been on Imatinib ever since at 400mg.  My advice to you is to take each day as it comes and keep taking the tablet.  I've not had much in the way of side effects since taking Imatinib. I do get cramps from my leg from time to time and also my hand gets stiff from time to time but no real issues.  My results from taking the imatinib daily are very good and getting better all the time.  I was told at the beginning that I could be off the medication after 5 years but I could also be on it for life.  I am hoping I will be taken off it after another three years but if I do have to remain on it for life well it's no big deal (for me) to take one tablet a day every day.

Unless the medication your on is creating some really bad side effects you will feel better in the future.  If you are experiencing bad side effects see your consultant straight away.