Hi, no idea why but having a massive wobble and have to keep reading the bit that says my CML isn’t life limiting!! Diagnosed almost a year ago and struggled with tolerating various TKIs. Have settled on matinib but only in half the dose - If I increase I get awful an awful rash. Don’t know why I’m wobbling as BCR-ABl is reducing so looking positive. Of all the cancers to get I guess this is no where near the worst - might even be the best I guess!
helps to write this as stops me worrying my husband!!
Thanks
Hi and welcome to the Online Community.
I am so sorry to read about the wobble you are having with living with your CML but I hope you will find the support available in the community helpful at this difficult and challenging time.
I have lived and been treated with a rare incurable type of Non Hodgkin’s Lymphoma for over 22 years now so I do understand the journey you are on but talking with others who are walking the same type of cancer treatment path will help you navigate this unwanted journey.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups but I see you have joined our Chronic myeloid leukaemia group as this will be a good place for you to connect with other folks who may be on the same cancer treatment pathway.
Navigating the community will depend on the device you are using. To go to the group just click on the green link above then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best ((hugs))
I am doing great thank you, now into my 6th year in remission.
I have used the helpline a few times over my years - well worth the time it takes to call.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support. Also check this link to the Macmillan Buddies Telephone Service
((hugs))
