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Hi Justin
Yes, it is possible to lead a normal life with CML - though "normal" means many different things to different people. Most people manage pretty well, and have a normal life expectancy. However, you do have to take the drug, whichever one you are on, every day. They are all powerful drugs, and most people find that it can take some months to get used to them. They all have side effects, too, and these vary from one person to another, and from one drug to another.
I have been on imatinib (Glivec) for nearly 7 years now, and am now on a half dose (200 mg rather than 400 mg), after showing very good results, especially over the last 18 months.
You can read a lot on this website about how different people have coped with diagnosis, and with the side-effects. If you have the time, try to find out and understand as much as you can about CML, so that you can ask the right questions when you see your doctor. It is of course upsetting and worrying at first, but as you start to see your blood counts improve, I hope that you will begin to feel better.
There is a great deal of information here, so please ask any questions you want, someone will probably have the answer.
Best wishes for the future
Olivia
Hi Justin and welcome.
I am sorry that you have been diagnosed with CML so young, and therefore have to deal with all the issues that come alongside a diagnosis of a serious disease - However, the good news is that the development of TKI therapy back in the 1090's -2000's of which imatinib (Glivec/Gleevec) is one, has been a 'game changer' means if you are diagnosed with chronic phase CML you are extremely likely (Iris Trial 8 year data shows progression free survival at over 90% ) to live out your normal life span.
Most of us have been able to live/work/play in spite of CML... as Olivia has said, your body (and you) needs to get used to TKi therapy but as you go on the level of your disease will decrease, most likely to levels that can only be measured by a very sensitive test called a PCR test. This test is most accurate when your PH+ white cells (CML cells) are reduced in the marrow below 10% and on down to the molecular level of 1% and below.
You can download our patient booklet on PCR testing and what you might expect from TKI therapy from our home page - however, I suggest as Olivia has done already, that you read as many pages on this website as you can comfortable deal with.... starting with CML Facts and Living pages.
It is highly likely that - as long as you are adherent to therapy and take your TKi every day (preferably within a regular routine that suits your lifestyle) you will see your disease go into remission very quickly and you will be able to move on and live 'with' CML without it ruling your life.
Please do ask here if you have any specific issues,
Sandy
Hi Justin, I was diagnosed 4 months ago and have been on Tasigna (Nilotinib) for just 2 months. I have had a very rapid response to the medication with my PCR at 4.8 after 30 days and I have had a complete haematological response. I have had minimal side effects - a bit of fatigue but really that's it. The big issue with Tasigna is the possible cardio-vascular side effects. My haematologist got me to have a full work up with a cardiologist, I have had a MUGA scan, Doppler scans from my carotids to ankles, echocardiogram, ECG's etc and I am on a 6 month recall with the cardiologist. I have not had Gleevic (Imatinib) but my understanding is it has more 'annoying' side effects but no 'serious' ones eg cardiovascular issues, and the response is slower. From my perspective, and I spent some time considering all thee TKI's which were available to me, I chose Tasigna and I'm glad I did. I am reassured by my medical support so if you go down this route, ensure you are checked for diabetes and cardiovascular issues and monitored closely.
I would be happy to share more if you wish and I'm sorry this has happened to you at your age. I'm 51 and it feels 'annoying' so I can only wonder how you must be feeling. But as others say you can live with this and you will. Best wishes.
Ben
Hi Justin
I have been on Gleevec since Sept 2009 and doing well on it. Yes, there were some side effects at first - mainly puffy eyes and leg cramps but these subsided within a few months. I was on a reducing dose trial (DESTINY) for a year but had to go back onto the full dose as I lost remission. I got this back after 2-3 months on full dose and have had some more side effects which are fading now. I feel the advantage of Gleevec (Imatinib) over Tasigna (Nilotinib) is that it's only 1 tabet a day with or after a meal with a large glass of water. There is no need to fast twice a day and the effect on the heart and cardiovascular system seems to be less. It may take longer to reach remission but we get there in the end.
Best
Chrissie
Hi Justin,
I am a 60 year old male diagnosed 2 months ago and was started on Nilotinib shortly after the diagnosis. I was only on Nilotinib for 2 weeks (sample pack) while the insurance companies worked out the copay issues for Imatanib. I have been on Imatanib for 6 weeks and I am struggling with constant nausea and diarrhea. I asked my doctor if he had any patients on Imatanib that would be willing to talk about things. Interestingly enough, his response was all of his patients on Imatanib could not handle the side effects and are now on Nilotinib. This certanily has me wondering if I should be switching drugs. Can anyone speak to switching drugs or speak to the Imatanib side effects?
Thanks.
Chris