Hi I’m 52 years old and was diagnosed with Chronic myeloid leukaemia on Monday. Mine was found by pure chance as I have monthly bloods taken as I’m on Methotrexate for Psoriatic Arthritis. This week has been so tough, from the phone call on Monday, to seeing the consultant and my support nurse on Thursday and having a bone marrow aspiration done Friday. I’ve been all over the place my anxiety is through the roof, I’ve very little appetite and can’t sleep well and I didn’t know you could cry so many tears! We’ve told our children who are grown up, my parents and closest friends so far. I started Imatinib yesterday so I’m scared about all the side effects that were pointed out to me. I feel like my life has been flipped upside down within a week
Oh @Lisa1971 you describe it so well when you say you feel that your life has been flipped upside down within a week, welcome to our forum you are now part of our forum family.
Actually I was diagnosed with Chronic lymphocytic leukaemia (CLL) at the age of 53yrs old, 20 yrs ago.
You have had such a hectic week too with appointments, they exhaust me.
Personally I am not surprised your anxiety and perhaps shock are through the roof and your week has been tough.
However, again personally, I reckon tears are good to get out instead of internalising it all.
It helps so much having supportive family and friends.
I think all medications now go through all the side effects that there is a chance could be just to cover themselves.
What I do do is to write down all my fears, questions and practicalities for every appointment.
I also take responsibility to tell every medical person of other medications I am on.
I am sure others will share their experiences.
The Blood Cancer UK support line is there for you on 0808 2080 888
Don’t forget food is fuel for the body and I do not function logically without sleep, both easier said than done I know.
Please do keep posting as I look forward to hearing more about you and how you are getting on.
Be very kind and really look after yourself.
Hi @Lisa1971 So sorry you have joined the club but honestly Chronic myeloid leukaemia is very easily managed these days. Imatinib is very well tolerated by most and the early side effects soon lessen to a mild form. I was diagnosed back in 2003 when i was 39. I am still here but have progressed through to Nilotinib and now Asciminib.
I was diagnosed just through some unexpected bruising. I knew i hadn’t had it long as i also had been having regular blood tests.
Let us know what you are most concerned about and there are plenty of people on here who will be able to help.
I it is is a shock to be diagnosed and you seem to have received great care so far. All the best
x
Hi @Lisa1971 im 56 and was diagnosed start of August this year. I was admitted to hospital for a week for treatment and then put on imatimib when i went home. Had to come of tablet after 2 weeks because my counts had got to low, after 3 weeks i was put back on imatimib and have been on it since then. Few aches and pains but things are slowly improving also have more energy now than i did a few weeks ago. Mentally ive started to feel better in myself aswel. Heard this quote the other day,( Tomorrow will be a better day) There is light at the end of the tunnel we have amazing NHS to care for us i look at it now that i will probably need to take a tablet every day for the rest of my life so be it. All the best to you
Hi @Spen68 a lot has happened to you since August and yes, I also feel personally that our NHS staff are wonderful.
Please do keep posting and be very kind to yourself