I’m going through testing for cml now. I’m so scared to be honest. Most what I come across online shows this cancer as being fine but when you actually see people comment on it who are battling it it’s not all bright colors and happiness. It’s a daily sickness battle. And it’s never going away. I just pray to God I’m gonna be okay. And I just want to say thanks so much for your videos definitely gave me some more insight on this cancer and the drugs. Wishing you the best 🙏🏻❤️
I've been on the medication since November 30 of 2018. I just had a check up yesterday and I'm at complete molecular response. That means they can't find any BCR-ABL genes in my blood. I know its scary as hell, but you're gonna be ok. Just keep taking the medication on time and every day.
Depression does suck. I just try to stay busy as much as I can, but when I'm in bed late at night it bugs me. Never really got fatigue from it. I go to work mostly 8 hours 5 days a week. Sometimes overtime. After I get home from work I eat dinner than go to the gym 3 to 4 times a week. All I can say is stay positive. 👍
I know this video is from 5 years ago, but I would love to hear an update. I was recently diagnosed with CML and I am on my first month of Sprycel. I found your videos helpful, just to hear from another person with CML etc. I know you haven't kept the channel active, but if you could just drop a message with how things are now for you and if you are still on the medicine, I would love to know as I am very early on this same journey. Also it would just be a relief to know that all is ok 5 years on (if that is the case). I am hoping that is the case!
You're going to be ok. I'm 9 months in and I'm at complete molecular response. No sign of cancer in my blood. Just keep taking the medication everyday and on time!! Good luck
I have been on dasatinib for 18 months. I basically flatlined at 0.3% at the 6 month mark and made no progress for the past year, so we're going to try nilotinib.
I work a 9 hour shift but I can't make it through the entire straight shift. I have to break it down and take the laptop home, fortunately my employer allows that. It's been about 4 months on Sprycel for me. I used to cook so much but now I don't even have motivation to do it due to the fatigue, so it's double damaging to not eat healthy for sure. I did get hospitalized though from going almost neutropenic. The doc took me off my 100 mg sprycel for just a few days and starting it back up makes me remember how bad the shortness of breath is.
That sounds really tough. I hope that your body does better on it after having a short break - that happened for me anyway. Is there any support you can get for things like cooking?
@@mycmlexperience9311 Thanks. I always hoped for shortness of breath to chill out but it never did (yet). When I did start the med though, I used to have 16 hours straight of headaches every time I took it but that lasted for a month so hopefully things do get better. I am fortune that my family lives a block away, so they've been spoiling me with taking care of my dogs for me (but who could resist huskies, anyway?) while I try to get my shit together. The food thing is a hit or miss because my appetite really did go haywire.
I've been on it since the end of November. It takes awhile for your body to adjust. I still get side effects. Bone and joint pain mostly. I like most people I've read about was taken off the meds for a little(8 days).
Hi, I've just been on imatinib again and can't handle the side effects very similar to how you have been. I'm now possibly going on sprycel. How are you doing now? Hope your ok x
The side effects on imatinib were very bad I do a lot of heavy lifting labor and it took me a long time to get them to change me to spycel , the side effects are better but I still have a lot of trouble in the heat and the fatigue is still rough
i have been on sprycel for 4 years now and still going through fatiqe they just put me on a differnt chemo med and thats been about three months now do you have a hard time paying for it they keep sending me sprycel if you need it unopened bottles
I’m going through testing for cml now. I’m so scared to be honest. Most what I come across online shows this cancer as being fine but when you actually see people comment on it who are battling it it’s not all bright colors and happiness. It’s a daily sickness battle. And it’s never going away. I just pray to God I’m gonna be okay. And I just want to say thanks so much for your videos definitely gave me some more insight on this cancer and the drugs. Wishing you the best 🙏🏻❤️
I've been on the medication since November 30 of 2018. I just had a check up yesterday and I'm at complete molecular response. That means they can't find any BCR-ABL genes in my blood. I know its scary as hell, but you're gonna be ok. Just keep taking the medication on time and every day.
Hi Steph. How did your test come out? If you don’t mind me asking
In my experience, you’ll live a good life. Had it since 2017. Just an adjustment. Cost is the biggest worry.
Depression does suck. I just try to stay busy as much as I can, but when I'm in bed late at night it bugs me. Never really got fatigue from it. I go to work mostly 8 hours 5 days a week. Sometimes overtime. After I get home from work I eat dinner than go to the gym 3 to 4 times a week. All I can say is stay positive. 👍
I know this video is from 5 years ago, but I would love to hear an update. I was recently diagnosed with CML and I am on my first month of Sprycel. I found your videos helpful, just to hear from another person with CML etc. I know you haven't kept the channel active, but if you could just drop a message with how things are now for you and if you are still on the medicine, I would love to know as I am very early on this same journey. Also it would just be a relief to know that all is ok 5 years on (if that is the case). I am hoping that is the case!
Thanks for the update! Can't wait for the next! I'm on week 3.
You're going to be ok. I'm 9 months in and I'm at complete molecular response. No sign of cancer in my blood. Just keep taking the medication everyday and on time!! Good luck
Thank you for posting. I start Sprycel next week if insurance approves it.
praying for your recovery!
looking great! so healthy. i hope you're still ok.
I am CML patient
I take dasatinib 100 mg per day since December 2021
My BCR-ABL( RT PCR) 0.00 % with 1.5 year
My location Jajpur, Rajasthan, india
I have been on dasatinib for 18 months. I basically flatlined at 0.3% at the 6 month mark and made no progress for the past year, so we're going to try nilotinib.
Same for me. How did nilotinib work out for you?
I work a 9 hour shift but I can't make it through the entire straight shift. I have to break it down and take the laptop home, fortunately my employer allows that. It's been about 4 months on Sprycel for me. I used to cook so much but now I don't even have motivation to do it due to the fatigue, so it's double damaging to not eat healthy for sure.
I did get hospitalized though from going almost neutropenic. The doc took me off my 100 mg sprycel for just a few days and starting it back up makes me remember how bad the shortness of breath is.
That sounds really tough. I hope that your body does better on it after having a short break - that happened for me anyway. Is there any support you can get for things like cooking?
@@mycmlexperience9311 Thanks. I always hoped for shortness of breath to chill out but it never did (yet). When I did start the med though, I used to have 16 hours straight of headaches every time I took it but that lasted for a month so hopefully things do get better.
I am fortune that my family lives a block away, so they've been spoiling me with taking care of my dogs for me (but who could resist huskies, anyway?) while I try to get my shit together. The food thing is a hit or miss because my appetite really did go haywire.
I've been on it since the end of November. It takes awhile for your body to adjust. I still get side effects. Bone and joint pain mostly. I like most people I've read about was taken off the meds for a little(8 days).
What ever became of this patients case?
Hi, I've just been on imatinib again and can't handle the side effects very similar to how you have been. I'm now possibly going on sprycel. How are you doing now? Hope your ok x
The side effects on imatinib were very bad I do a lot of heavy lifting labor and it took me a long time to get them to change me to spycel , the side effects are better but I still have a lot of trouble in the heat and the fatigue is still rough
i have been on sprycel for 4 years now and still going through fatiqe they just put me on a differnt chemo med and thats been about three months now do you have a hard time paying for it they keep sending me sprycel if you need it unopened bottles
Hi
I hope you will be fine, I want to talk to you
SALAM SISTER HOW R U
I AM USE IMATINIB 100MG
TEST ABL BCR
Navid 🇵🇰🇵🇰🇵🇰
how are you