Hi just been diagnosed! A lot to take in after coming out of breat cancer 18 months ago . Any helpful tips would be grateful . Just terrified of drug side effects as have suffered so much x
You are here
Fiona smith
Download a copy of the NCCN guidelines for CML. It will give you an excellent overview of CML terminology, treatments (drugs) and related information.
David, Sandy and others active on this forum may also suggest additional reference sites to get you started.
Feel free to ask question here.
https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1427
(if you have trouble downloading the PDF on CML, PM me)
Hi Fiona
Sorry to hear about your breast cancer and now your cml diagnosis. That’s a hell of a lot to take in. Now the great news is CML treatment is about 95% successful with TKI. A medicine you’ll take for the foreseeable future, if lucky one day you may not have to take it all (about 40-50% of people manage that and it’s known as TFR treatment free remission)
You’ll have many questions and you’ll soon see that other than popping these pills it’s an inconvenience. That’s not to say that CML isn’t a serious illness it’s just to highlight how amazing treatment is for it for the vast majority and I am sure you’ll be in that bracket too.
It’ll take a little while to get used to the meds and now another diagnosis I can only sympathise with you on how crap that is.
Ask as many questions as you like I’ll be happy to answer. I am 5.5 years into my treatment and all is good. Side effects are manageable and disease is in stable remission. A place you’ll be no doubt very quickly.
Take care
Alex
Hi Fiona. I am you but 20 years in your future. My cml was diagnosed about 18 months after my breast cancer was. But in my case it was my 2nd breast cancer. The blood tests were normal during my breast cancer so i knew my cml was caught early and i am sure you are in the same boat.
With regard to drug side effects i can reassure you that the cml drugs have much fewer side effects than those taken for breast cancer. Most of us have very few side effects and mostly they are in the first few weeks. I am taking Nilotinib for cml and exemestane for the breast cancer. There may also be supplements recommended to help you with side effects.
Do feel free to ask questions from all of us on here and you will find lots of information too.
All the best x