Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
Not really sure where to start and what to do next.
I have been diagnosed with chronic myeloid leukemia on Friday. I have had ups and downs over the last 30 hours since being diagnosed.
I have currently started tablet chemo to reduce the white blood count .
I have had lots of friends and family support but it's now starting to feel real. I've accepted I have this condition but I don't know where to go next .
Friends and family support is great but I feel I am protecting them. I am more concerned about my wife and parents than myself at the moment.
I am scared for the future and not sure what I should be doing or feeling. I appreciate this is not unusual and Is common for people freshly diagnosed. I woikd love to feel like I have some control over my life again
Sorry for rambling
Hi again Darren Darren C, I gave you a Hi over in your 'New to the site' post.
You will see from my profile at Thehighlander that I was diagnosed with my type of blood cancer over 19 years ago.
Was the journey easy? Well it was not all hard,
Did I worry? - I am human so yes.
Did I get through it? Well a big fat yes to that one as I should have been gone 30 months back.
What one nugget of advice can I give you? You have no real control over the treatment journey this is the job of your medical team - trust them. The battle you have to fight and win is the one that is going on between your ears, win this one and you have improved the outcome of this journey dramatically.
So get your mind in order, start a note book of all the questions and issues that come to mind. This is actually very important at silly-o'clock when your head is buzzing. Put your thoughts down on paper (not on your phone) and park them.
The note book goes to all appointments and when you are asked "Have you any questions?" .........the note book comes out and you say "Yes I have"
Doing this very simple thing helps you and the family find order in all this and you can make plans to get through this.
CML is rather rare so let's look for some of the folks to pick up on your post.
Always around to listen and help out.
PS - make sure that you have indicated how you want to recive email notifications from this group - see right hand side of page.
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
Thanks for the response
I think it is the fear of the unknown at the moment .
Hoping to get more answers and understanding once consultant back in on Monday. Doesn't help that I'm on the general admissions ward due to no beds in relevant department.
Conversations have been positive so far, if I respond to hydroxy carbamide, then there is a drug I can go onto which should be able the control the cancer. But my fears keep taking over but I suppose this is human nature.
Thanks again for the useful points you raised. Finding this site has helped with feeling less alone
My husband has lived with this condition for 2 years, he was 32 when diagnosed and a total shock to all family as there were no family history of the condition. I remember something been up as i had hospital and GP trying to contact him which I knew it was something serious. As soon as he told me I broke down as my aunt had had this many years ago before the revelation of tki's in the form of chemo tablets. I just couldn't believe it could be controlled with 2 tablets a day. He has been in 2 different ones and was even able to come off them for 3 months to conceive our second child. So there is hope even though muscle aches and occasionally rashes are a small price to pay.
This site is very useful and packed with information, I hope your experiences and treatment are progressing well.
I went to a routine health check on Friday and got a call back on Monday to ask me to go to A&E immediately then in the evening both Bupa and NHS confirmed of CML. I am still in shock. I have told my parents and close friends and work. Bone marrow biopsy to be done tomorrow. I havet known anyone at my age has cancer. I dont know what to think right now. My Hematologist was trying to reassure me this morning and I have felt better. Still with two young children and as a mother and has a career, I felt completely numb.
Hi CML Feb19 and welcome to the Online Community but always sorry to see folks finding us.
A blood cancer diagnosis can take time to get right, but this is so important as this helps your team get the treatment spot on for how yours is presenting.
It’s also important that you don’t see this diagnosis being like a solid tumour cancer as once treatment starts it will melt away growth areas.
As you will see from the rest of the thread getting information is important so follow what has been recommended in the thread. Once you find out more cone back and update us and we will try to help you more.
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 journey was rather long so it is a touch like War and Peace ;)
All the best for now.
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