Hello, thanks for sharing your stories. It’s amazing to see how you as husband and wife have been going through this journey together so beautifully. I have been diagnosed last week with CML at the age of 36. I had my WBC at 240K.
Hello Diem Bui, Thank you for your comment; that is very kind of you to say. Sorry to hear about your CML diagnosis. Your situation is very similar to mine as I was 34 and my WBC was 450k at diagnosis. We do believe there can be a lot to be hopeful about because the CML prognosis is generally good and there are good treatment options. If you have any questions, please let us know. Write back some time and tell us how you are doing. We wish you the very best and good health moving forward. Stephen and Amy
@@healCML hello, how are you my favorite people? I have been inspired by you so much. I got my 3 month anniversary pcr test last week and the level is .06% very promising. God is good. I am also thankful for your story
How you doing? I recently got diagnosed with CML, and blood counts were similar to what yours was before. Please let me know what kind of medication you are taking and how are you now?
Hello. I was just diagnosed with CML this week so I am very scared about what will be next. I meet with my oncologist tomorrow to discuss treatment options.
Hello there. Thank you for your comment. Sorry to hear about your diagnosis. It is definitely a very scary time at diagnosis. Fortunately, for those in chronic phase, there are several good treatment options and many people can live a normal life. Good luck with your visit with your oncologist. Please keep up posted and do not hesitate to ask any additional questions! -Stephen
Hi. Thank you for sharing your stories. I'm a college student studying hematology and I preparing a presentation about CML. I think your video is very useful. Can I share your video and Blood test results with other students? I'd really appreciate it if you could allow it.
I was on Tasigna (nilotinib). This is one of the second line TKI drugs. I started off on 800 mg a day (two 200 mg pills, twice a day). After three years, I went down to 400 mg a day, or one 200 mg pill twice a day.
Hi there, thanks for sharing. I was diagnosed back in October 2020. I was in blast crisis and immediately put in hospital for a month to undergo aggressive chemo, 3+7 . I am curious as to what phase your CML was when you were diagnosed?
hi I'm cml patient,since feb26 2020..and I'm taking nilotinib200 mg twice a daily. and this madication all from government. now all madication stop from government. they are not give any more,thid medicine are so expensive. my question i can take any other drug whice one very low price. pls
Hello and thank you for your comment. Sorry to hear that the government is not paying for the nilotinib anymore. In the US, we get can help from the drug company, which is Novartis. Maybe you can contact Novartis to ask them if they offer help. In addition, there are other drugs that may be cheaper. I believe Gleevec (imatinib) has a generic version so you might be able to get it cheaper. But you would need to talk to your doctor about changing to a different medicine. Good luck! Stephen
Please share your story so we can all support each other.
Thanks for creating this channel. Im greatful yo you. Hearing you makes me more happy and looking forward for quick recovery
Hello, thanks for sharing your stories. It’s amazing to see how you as husband and wife have been going through this journey together so beautifully. I have been diagnosed last week with CML at the age of 36. I had my WBC at 240K.
Hello Diem Bui, Thank you for your comment; that is very kind of you to say. Sorry to hear about your CML diagnosis. Your situation is very similar to mine as I was 34 and my WBC was 450k at diagnosis. We do believe there can be a lot to be hopeful about because the CML prognosis is generally good and there are good treatment options. If you have any questions, please let us know. Write back some time and tell us how you are doing. We wish you the very best and good health moving forward. Stephen and Amy
@@healCML hello, how are you my favorite people? I have been inspired by you so much. I got my 3 month anniversary pcr test last week and the level is .06% very promising. God is good. I am also thankful for your story
@@Db19451 Thank you so much for your message and update! 0.06% after 3 months is a great result! We are very excited for you!
How you doing? I recently got diagnosed with CML, and blood counts were similar to what yours was before. Please let me know what kind of medication you are taking and how are you now?
Hello. I was just diagnosed with CML this week so I am very scared about what will be next. I meet with my oncologist tomorrow to discuss treatment options.
Hello there. Thank you for your comment. Sorry to hear about your diagnosis. It is definitely a very scary time at diagnosis. Fortunately, for those in chronic phase, there are several good treatment options and many people can live a normal life. Good luck with your visit with your oncologist. Please keep up posted and do not hesitate to ask any additional questions! -Stephen
Hi. Thank you for sharing your stories. I'm a college student studying hematology and I preparing a presentation about CML. I think your video is very useful. Can I share your video and Blood test results with other students? I'd really appreciate it if you could allow it.
Yes, of course. Please feel free to share the link of the video!
Hi
My dr said I need to see a hemoglobin dr
I'm nervous 😓 say a prayer 🙏🏻 ty
We’re sending prayers your way. Please keep us updated. We’re here if you have any questions. Best wishes for your health. ~ Amy
Hi thank you for sharing your story , Can you please tell which chemo medicine you took and how many mg was that ?
I was on Tasigna (nilotinib). This is one of the second line TKI drugs. I started off on 800 mg a day (two 200 mg pills, twice a day). After three years, I went down to 400 mg a day, or one 200 mg pill twice a day.
Hi sir i have chronic myeloid leukemia but now i am in chronic phase i am taking imatinib can i be completely correct my blast cell is 2%
Yes, imatinib is a good medicine. And 2% blasts are low. You have a good chance to be cured. Just make sure to always take your medicine!
Hi there, thanks for sharing. I was diagnosed back in October 2020. I was in blast crisis and immediately put in hospital for a month to undergo aggressive chemo, 3+7 . I am curious as to what phase your CML was when you were diagnosed?
I was diagnosed in the chronic phase. Are you still on treatment?
I can contact you to a doctor who helped me,if you are interested
God name help me 🙏
How can we help you?
hi I'm cml patient,since feb26 2020..and I'm taking nilotinib200 mg twice a daily. and this madication all from government. now all madication stop from government. they are not give any more,thid medicine are so expensive. my question i can take any other drug whice one very low price. pls
Hello and thank you for your comment. Sorry to hear that the government is not paying for the nilotinib anymore. In the US, we get can help from the drug company, which is Novartis. Maybe you can contact Novartis to ask them if they offer help. In addition, there are other drugs that may be cheaper. I believe Gleevec (imatinib) has a generic version so you might be able to get it cheaper. But you would need to talk to your doctor about changing to a different medicine. Good luck! Stephen