Hello 33 years old diagnosed with CML three years ago. Iv tried 4 different lots of chemo tablets daily all which don’t ageee with me and make me very sick & poorly. Is there anyone else who has side effects to treatment? I now have a hospice nurse and it seems very scary & like I’m living my life in limbo. I’m a mum of 4. & I’m really struggling with the side effects again I’m currently taking “Bositnib”. Any help or guidance would be greatly appreciated.
Hi Cml08a655 and welcome to this corner of the Community although I am sorry to see you joining the community………. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive type of T-Cell Non Hodgkin’s Lymphoma was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of navigating this journey rather well.
CML is on the rare side, but there have been a few active members recently so let’s look for them 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.
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 and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat
