You are here

Should I Or Shouldn't ai Take Treatment

Categories:

I started Sprycel 2 weeks ago.

11q Ph+ Unmutated; also and first diagnosed was CLL.

If I say: I think I will outlive them or least not die for 15 years, AND, that I believe I'm just feeding their gold pockets. And, for good measure, hey, another better...a cure may come along. If I were to say that is what I'm thinking about. And if so, obviously, stopping.

What would tell me? Would ask to see my numbers -- they're all online, available even on my own server -- would ask to know how a particular number or test result, like, "infiltration 2%,"? Would you shine me on? 

The doctors cannot or will not answer except to say: "If you stop, you will die." And, I ask: "But when?" 

They have no answer, nothing. They have NO idea when that might be, should I stop. I doubt they should even say: "You will die," unless they mean in the grandeur sense, yes, everyone dies...eventually and that is the question ...and these are the experts?

 

http://www.bloodjournal.org/content/126/1/2?sso-checked=true

 

This article shows you would have 8 years max without taking treatment.  It doesn't discuss quality of life during those 8 years.  I understand that the treatment is expensive but I would strongly urge you to take your Sprycel as to do otherwise is surely a death sentence.  You shouldn't be on Sprycel for ever - my doctor thinks 5-6 years if I reach all the right milestones etc.

Tedro, I think I understand your anger. I have felt so angry sometimes that I don't want to take the pills: Imatinib, for me, since April 2017. The idea that my (and our) misfortune allows big drug companies to rake in ridiculous profits is almost unbearable. But the alternative, foregoing effective treatment, is not a rational choice.

When I have good days, I am so happy to be alive and by most measures, healthy. Our children, friends, families are happy that we're alive. Nobody knows their own future, when they will die, whether they have cancer or not. I hope you will decide to take the pills. It is your choice, to be sure, but we know that it is highly likely you will live decades if you do, and your quality of life will be pretty good.

If you are having bad side effects, talk to your doctor, and know that they will probably get better.

Best wishes to you.

I totally understand your Anger and I was the same way. Please take the medicine. I've lost everything that I used to do before my diagnosis 20 months ago . I used to be a bodybuilder and now I can't lift weights at all . I understand your pain and the cost of the medicine is rediculous and absurd . If you have people who love you and Family who loves you. You can't think of yourself you have to think about all the people who love you. I'm still angry but I could not take the pain of watching my wife watch me die slowly and if you stop the medication thats what will happen. You will get sick and die and not in a good way . Please take your meds and watch your families smiles because you will be there to enjoy their life and the love they have for you .