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Hi all,
This is my first post on this forum. I have had CML since Aug 17, 2011. I am on my third medicine of a disease my doctor insists is an easy one to "cure". I've read the survival rates of this disease! With each passing week, I have become more and more anxious and paranoid about life and the time I have left. I am on 800mg of Gleevec daily. I hurt mentally and physically. My Mom has been my biggest supporter through this journey and I feel like my lack of strength has let her down. She also has cancer and is a pillar of superhuman strength but her body is slowly failing her. She is my best friend in life and I worry about her so much as well. I just dont know where to turn. I dont and havent seen a light at the end of the tunnel for a long while. I only see survival to the next blood test, with anxiety in between. I dont live life, but exist within it. I get no joy from hobbies. They only pass the time.
Any advice would be greatly appreciated
Posted on 02/09/13, 12:26 am
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Reminder: This is a support group for Chronic Myelogenous Leukemia (CML). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 02/09/13  4:12pm
" CML is not really curable with the drugs that are available today, but it is highly manageable for many. Nevertheless, just knowing that you have cancer definitely wears on both your mind & body, & so do the side effects of the drugs. You are not alone.

Although Gleevec is keeping my CML under control, I have experienced numerous side effects myself. I think the worst one to contend with is the low energy levels that are due to the depressed immune system. I sometimes feel like I'm trying to walk in chest-high water & I'm not getting anywhere.

You are contending with a serious disease. I know you want to maintain the life & the energy that you had before, but you have to pace yourself. That does not make you a failure - it makes you AWESOME!!! "
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Reply #2 - 02/12/13  5:09pm
" Hi: I totally understand how you feel, as I go in and out of that same mode of thinking. I have lived with CML for 14 years, and I have to just keep telling myself that I am still here. You said you were on 3 different drugs for your CML. I see your on 800mg of Gleevec. You might be able to cut back your dose which will relieve some of your symptoms I am on 400mg . I have been on Gleevec since day 1 which was started back in 2000. I do get a lot of side effects, and I am tired all the time with other issues. I just keep taking one day at a time, and Thanking God that he has gotten me through all these years. Sorry your Mom also has Cancer, and that surely makes it harder on you. Its good when you can talk to others who have CML, as we totally can relate to what your feeling. You can send me a personal message anytime if you need some support.
Life is so hard on everyone right now with this crazy economy, and everything else. I think it just makes having a sickness make us feel worse. Are you getting close to PCRU? I think you would feel more positive once you got to that point. I assume you have gotten to a Complete Cytogenetic Response. Please share,so we can help. "

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