Chronic myeloid leukaemia

Affected by chronic myeloid leukaemia (CML)? Join this group to share experiences and ask questions to people who understand what you're going through.

Stopping taking imatinib

Birth giver
Posted by

Hi I'm a new member, I was diagnosed with cml in the summer of last year. I am a single parent without any family or network of friends. My daughter is autistic and her behaviour has left me feeling unable to take my imatinib as I suffer from many side effects and suffer with fatigue so I'm tired all the time. I do work and it's a very physical job so again it's been easier for me to handle work without taking my medication.

When I had the side effects my daughter would become very angry and so very demanding, I couldn't deal with feeling sick, the stomach pain, headaches and general feeling of being unwell. 

It's been approx six weeks since I last took my meds but I o be honest, even though I feel unwell... I feel better than I did when I took the imatinib

Johnty
Posted by

I am so sorry to hear you feel the pressures of your situation makes you feel unable to take your medication, I feel you should talk to the cancer nurse specialist at your clinic to discuss your difficulties. They will be able to point you in the right direction to get the support you need,also you should discuss your unwanted side effects with your doctor as there may be a way of making things more bearable for you.The answer is not to stop taking your medication, there is always a way round these problems if you reach out to the people who are here to help you. Have you discussed your health with occupational health at your job ?

JJ
Thehighlander
Posted by

Hi and a second welcome to this part of the Online Community but sorry to see you finding us.

I had a different type of blood cancer but can understand the challenges you are having. I have to agree with in that you do need to have an open and honest coversation with your team both for your good with regards to your own health and that of your daughter.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 helpful as you can talk to a friendly person that can help in various ways.

You could also post a question to Caroline our Macmillan Heamatology Nurse as she may be able to give you some guidance with regards to your meds and what is going on with your health.

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.

All the best.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

Birth giver
Posted by

Thank you very much... I have been unsure as to whether to post anything, I have been for a while now. Every one's journey is so different. 

I will add to my profile as soon as I get a chance. And again thank you for your message

Vanessa