Hi All, I was diagnosed with CML out of the blue in October following a blood test as I kept getting cellulitis that wouldn't go away with antibiotics. My wbc were 250+ so I was admitted to hospital for a week to bring that down. I have been put on 400mg Imatinib every day. I have had loads of side effects, now mainly tiredness but cannot sleep at night, tinnitus, muscles and bones aches. Generally anxiety anxiety cognitive function now slow. The doctors say this will all settle down and I will live a normal life? I need to return to a busy Exec job soon in a inner city school. Dreading it. I cannot get up in the morning. Will I ever feel normal again? Apparently my mutation point was rare so I am wondering if my adjustment to side effects will be longer? My partner, family and family are really supportive but nobody really understands
Hi Pam H 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 Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
CML is on the rare side, but let’s look for the 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.
You may find it helpful to call the Macmillan Support Line 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, benefits/financial guidance or just a listening ear.
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.
