Diagnosed in October 2017 so a CML veteran l, please feel free to ask me anything

Hi Sprycat and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but I was diagnosed back in 1999 with a rare, incurable but treatable type of Non Hodgkin's Lymphoma reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I appreciate the journey rather well.

Good to hear that you are now coming off the Nilotinib and let’s look for life to find it’s new normal.

It’s also great that you want to help others navigate their journey especially those in the early days of their diagnosis.

Self care is important and talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with CML.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Do get back to me if you need further help.

Hi Sprycat 

I was diagnosed in July 2016 and was on Imatinib 400 MG for almost a year and it was later changed to 300 MG. I am in remission and have reached molecular response.  BCR-ABL has not been detected in my results since June 2021.  I asked my oncologist if they can lower the dosage or let me come off imatinib but he says that even though the BCR-ABL gene not detected, I still need to to continue taking my medication for the rest of my life.

What made your doctor reach the decision to let you come off your medication? I am seeing my oncologist next week and any information or advice you can give me would be very much appreciated. 

Thanks, 

Niki 

Hi Niki,

I haven't had a detectable BCR-ABL since September 2020. My oncologist informed me that they like to see it undectable for at least two years, at which point they are looking to move me off my medication. I was only on Imatinib for a short time, so can't really speak for the ffect of the medication, but I was moved to Nitlotinib due to my high sokal score. I am also young for a CML diagnosis having being diagnosed when I was 31, which may have also helped my doctor make the decisions to move me off of my medication. 

Sadly I am not an Oncologist, so I can not give any advice and I have always had a policy of taking the advice of my oncologist. Having said that, patience is always needed especially with CML. It's a long process, so might be in the future that the stance of your oncologist changes. 

I hope this helps. Good luck with your next appointment. 

Hi Sprycat,

Thank you so much for your quick and informative response.  

I am not sure what my sokal score is. I'll ask my doctor on my next appointment. Unfortunately my doctor just tells me my results are good and doesn't go into details. I learned about the different types of responses and their meanings on my own.  I go over my results and do a bit of research online before each appointment because I think doctors explain things in more details when the patient is well informed and educated about the disease and medication. 

I wish you luck and health with your journey on coming off your medication. 

Niki

Hi Sprycat. 

I was diagnosed with CML in April, and next week I am starting my treatment with Nilotinib. I just got 50 years old, and the haematologist informed me that this is the first line medication if I want to enter a treatment free remission period...

Unfortunately my consultant is not very communicative, but having done some research my scientific background has helped me to understand how things work, but not the patient's side (if that makes sense)

So, I would like to ask you of your experience with the specific TKI, side effects, quality of life, recommendations, things that helped you etc...I know that one size does not fit all, but any help is greatly appreciated.

Thank you

Hi Sprycat I was diagnosed with CML in February 2019.

I have had a really rocky journey consisting of me going on all the most modern TKI's and Interferon injections, finally settling on Ponatinib which is one of the first TKI's used back in the 50's.

I was as my Oncologist says allergic to the others as they all caused me various side effects going from skin changes, vomiting, diarrhoea, extreme fatigue, stomach pains, mouth sores, bone pain, and hair loss. I dont think I have left anything out. 

I went into the accelerated stage  May last year and that I needed to keep taking the Ponatinib even though it was causing me severe diarrhoea and vomiting. That if I stopped I would probably only have about 6 months to live so I persevered and it eventually stopped to everyone's surprise. 

I went into remission just before Christmas last year which was the best present ever and my Oncologist said I was a miracle. I am glad to say I am still in remission but everything has taken its toll, my mobility has really suffered as I spent so long in bed but I am slowly working on this it is hard going.

I am determined to make up for lost time and hope that I remain in remission for a good few years so I can enjoy my retirement as I  turned 66 last December. 

I hope you do well coming of Nilotinib and have many many years in remission. 

Best wishes Suehannah 

Hi my name is karen diagnosed with cml about 9 months ago. I am on imatinib which I seem to bre responding to. But my las bcr-abl test had increased from 0.67% to 1.1%. Is this normal for levels to some    times  fluctuate. I would appreciate any feed back Thanks Karen x