Husband newly diagnosed with CML

Hi Kathy @chattykathy, I see you have our post had not had a reply.

I am Mike Thehighlander and ai help out around our blood cancer groups, I don’t have CML but was diagnosed in 1999 with a rare type of skin NHL.

I did put up a reply to your other post - hit the link below

https://community.macmillan.org.uk/cancer_types/chronic-myelogenous-leukemia-forum/f/diagnosis-and-treatment/214859/clinical-nurse-specialist

I am sure that some of the group members will be along, as always you can hit group members names to see their journeys, and look through the older post and hit reply to connect into the discussions.

Always around to help where I can.

Thanks Mike! I will check out the link now :) 

Hi Kathy 

within the last 4 weeks I was diagnosed for CML which was a bit of a shock as I went to the doctors for some routine blood test for my thyroidism to check my levels and the doctor got back to me to say that my blood test showed my white blood cell level was high and that they were going to refer me to a haematologist.Obviously with coronavirus it was all done over the phone. I had to have allsorts of blood tests done but they came back negative which made my haematologist not quite sure what was going on so then she asked me to have bone marrow biopsy which came back positive and another blood test I had done also came back positive. My haematologist then told me I had CML which was a bit of a shock considering I only went in for routine blood test. It’s hard for me to take in as I have a lot of health problems like epilepsy, asthma, Thyroidism, depression and now this I have been in and out of hospital with various infections. I have only just started my treatment  which is Imatinib same is your husband I’ve been on this treatment for about three days and it is making me feel quite sick. I take the tablet at night time before going to bed as my haematologist recommended that was the best time because if you start feeling sick then you can sleep it off but somehow when it comes to lunchtime the next day I start to feel nauseous. I know that people have said that you will get used to it and the side-effects will go but I’d like to know how are your husband has found it and whether he has had any type of side-effect and how he has managed it and if you know of any support groups?
thanks and all the best.

kate

Hi Kate  and welcome to this corner of the community.

A blood cancer diagnosis can be hard but once you get your head round this you find that the noise between the ears will start to calm down.

I have been on my journey with a different type of blood cancer (see my profile) for over 22 years and I am still around doing great, yes my type of lymphoma is incurable but I don’t focus on this, more on living life to the full as much as possible.

I see you have not joined the CML group, do this as you will connect in better with the folks in the group and receive email notifications.

Always around to listen and help out.

Hi Kathy , 

I was diagnosed 12weeks ago and I’m on Imatinib too . I take it after my evening meal and literally take it with a pint of water . I find drinking lots of fluids really help throughout the day too. 
The side effects do get better so hang on in there x