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Newly diagnosed with CML and uneducated

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I was just diagnosed with CML last week. I had an ultrasound completed because of the pressure on my left side which turned out to be my spleen is enlarged. Blood test and bone marrow biopsy confirmed the diagnosis.  I am 47 years old and I am still trying to come to terms with this and what this all means to my future with my family. I have an appointment with the oncologist tomorrow to discuss the results and treatment. She is starting me on 100mg Sprycel. Having done as much research as my nerves would allow, it seems like the right starting point. I have no idea what to expect, or what to ask. Also I am still trying to figure out a daily routine to get my mind straight and be as “normal” as I can for the kids. I’ll take tips or encouragement. Thanks.

 

craig

Sorry you had to join the forum. There is a lot of information available here and keep getting educated. It is very treatable in the vast majority of cases. This is truly a form of cancer where scientific breakthroughs (TKIs have revolutionalized treatment). I remember being told when I was diagnosed that if I were going to have the C word this is the one you want. Of course it was nonsense at the time but as more time goes by I am truly grateful and see know why they said that. Prayer and family is my source of comfort.

Right now be sure not to miss doses even though there may be pain for a few days. It will more than likely subside.

You want to get your PCR under 10% at three months or 6 months as long as the trend is down down down. I suspect you will hit that target and start feeling better the further away you get from diagnosis.

I am 39 and have kids too. Some days you may worry more than others but keep it in perspective as it is highly treatable. Hope you start feeling better the more you learn.

Also read up on Vitamin D3 and K2 among other supplements. There are many posts in the forum about it so do read up and see if it is for you. Take care.

Thank you Coloradoguy. I will be educating myself daily. FYI - I am also a Colorado guy having lived there for many years. I will continue to lean on my family and prayer. 

Sorry you have joined this club. Scary at first. Confusing also. Starting any TKI has it's own side effects and you will need to be closely monitored.  Cancer sucks. But after a while, you BCR-ABL1 scores will come down, and hope will spring eternal. Faith and family, and a damn good hematologist specializing in CML will get you through. 

Peace!

I am a father of two children. I diagnosed before 4 years and I started treatment with Sprycel 100 mg with zerow side effects.
I know that is a little bit difficult to handle it at the beggining but you should have in your mind that the majority of cases(95%) are going absolutely fine!
Maybe you will have some side effects but there are supplements that can help feel a lot better!! You will find plenty of info here!
Except the pill I have to take every morning and the blood test every three months, my life is absolutely the same that was before!
I wish you the best!