Suggestion about Treating the CML

Dear Faisal

Sorry about your diagnosis and welcome to our club! I was diagnosed in July of 2016 and have taken both Tasigna and Imatanib (Gleevec).

I am going to use very stern words in a moment, it is not to discourage you but because I feel like when I read your letter that you may not have taken in the seriousness of your situation. Many folks on this form have taken TKIs for over a decade, some were diagnosed with CML was pretty much universally FATAL and are alive today due to TKIs.

You are very recently diagnosed with an incurable form of blood cancer. It was very likely that you had, like many of us, very minor symptoms, but please have no doubt that what you have experienced is a MEDICAL EMERGENCY and without treatment you would have experienced major organ damage and eventually death. Prior to the development of Tasigna and other TKIs the survival rate of patients to 5 years was 30% and their quality of life was often very poor, requiring long hospital stays.

Thanks ONLY to TKIs, this will not be your fate. This medication which allows you to live mostly a normal life despite a serious, incurable and and otherwise fatal blood cancer is what you have asked the community to help you stop taking. TKIs are a medical miracle, we are all living our lives because of them and I ask you to reconsider the new lease of life you have been given because of them, rather than asking how you can stop them at 2 months post Dx.

NO diet will change the fact that you have an incurable potentially fatal longlife blood condition which needs to be managed. Its important you understand that.

It is very early days and you appear to be on a high dose of Tasigna, be aware that both the leukemia and the medication can cause fatigue. At two months post diagnosis I could barely make it up the stairs...now I go on mountain hikes, but much will depend on your age, the stage of the cancer, personal factors and on mental attitude. Its very possible that your life will need to change to accomodate your medical condition but I stress that its far too early to tell.

If you would like, tell us more about your blood parameters your BCR/ABL score and how you have been responding to the treatment and there is a lot of knowledgable patients on this forum. It may also help you to be an active and informed participant in the treatment of your condition rather than a bystander (what vitamins did doc suggest and why? Which blood params are problematic? How close are you to molecular remission? are your FBCs normal? what mg of tasigna are you taking daily? Did you know there is a mobile app to help you take tasigna? Why did your doc choose Tasigna for you?)

We all know the pain and shock and loss of control that comes with a CML diagnosis, we have all needed to walk that path and we are here to support and help you in many ways. Just not in advising a newly diagnosed and probably very sick person to stop the medication which is managing their condition.

Much love and good wishes to you for your recovery. 

Eva