Newly Diagnosed CML starting Dasatinib

Hi Cork and welcome to this corner of the Community although I am always sorry to see folks joining us. 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 back in 1999 with a rare, incurable but treatable type of Non Hodgkin's Lymphoma reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I appreciate the journey rather well.Dasatinib (Sprycel®) is used a lot so let’s look for group members to pick up on your post. You can also put Dasatinib into the search  tool near the top, select ‘anywhere’ and this will bring up the older posts and as always you can hit reply to see if the members is still using the site.

I have had a lot of treatments over the years (see my story below) but the one important thing is that the journey can be ever so different for everyone.

We could line up 10 people with the same blood cancer and on the same treatment and get 10 different stories. 

Some of the drugs I was on, the information said I would have some bad side effects….. I waited and waited and none of it happened…… my simple advise is expect a good journey and when the bumps come along deal with them and remember your clinical team are there to help you navigate this.

The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. 

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

We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with CML.

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

Do get back to me if you need further help.

Thank you so much this is really helpful.