Hi all
My partner was diagnosed with CML a week ago and has started chemo on the tablet form of Imatinib 400mg 2 days ago, the first day he was very tired no energy then day 2 well no other way to describe it - like a Duracell bunny he is constantly talking doesn't stop its like he is on drugs eyes dilated, heart racing then goes on a low and is out for the count. Is this normal? I am tempted to call the nurses to get it checked out but wanted to see if anyone else had experienced this and if i am just over worrying?
At the end of February he has more bloods to see how his organs are coping then March an appointment with consultant before the genetic bloods beginning of April. We have been told he will be on tablets for life and hopefully if these work then there will be no need to change the treatment or move to next stage so have our fingers crossed that they do.
Thank you 
Hi K4322 and welcome to this corner of the Community although I am sorry to see you joining the community and to hear about your partners CML diagnosis………. 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……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
The first thing I would say is in these very early days the distinction between what is or is not normal can be challenging….. so I would always advise you call his clinical team to get advice.
Doing this helps you and your partner develop a baseline as to what is going on and why.
Is he on any steroids?…… from my long experience these were like me getting new Duracell Batteries put in
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.
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 ((hugs))
