i was diagnosed with CML now almost 4 years ago when i was just 16 years old. My white bloodcells were at 526.000 so i was rushed to the hospital and got chemo. I have tried almost every tki and they all ended up not working or have to bad side effects. I am now taking Asciminib wich wirks great and since last month my Bcr-abl is under 0,1 wich is a huge milestone for me and calmes me a lot.
Congratulations. I was diagnosed too 4 years ago when I was 26. I was responsive to Sprecyl and Dasatinib but the side effects were too heavy so I recently switched to Gleevec. Response is slower than others but working well so far. Asciminib is not approved yet where I live. I think it’s the newest drug. Hope it works magic for you.
I have CML but I just hope the pharmaceutical companies would lower their prices. The no.1 reason for non-adherence for many CML patients is the affordability of these heavenly-priced tki's..
I was diagnosed 2 years ago in June. Been on Gleevec and Imantanib. My BCR-ABL hovers around 20. I got this from the water at Camp Lejeune, NC in the 80s. The VA is providing my chemo free of charge. I have continual dull pain in my shoulders and joints, and I get infections very easily. The first time I did, I brushed it off and was hospitalized for a week, just before sepsis set in.
Ray, Thank you for sharing. If you have any questions, please reach out to our Information Specialists, found here: bit.ly/IRCLLS. We are sending our best to you.
This is a very late reply. I hope that you well and improving. I also was diagnosed with cml in 2021 due to the Camp Lejeune water contamination. I was stationed there in 1975 and during the 1980’s. VA placed me at 100% disability. I use my private insurance for my health care. My medication is sprycle 100 mg. My doctor just prescribed 50 mg. Tests have shown it is just as effective. Take care brother. Semper go.
I was diagnosed with CML this year. In my case, I had a crap load of symptoms in the chronic phase and I probably was getting ready to enter accelerated phase because things got really rough all at once. It was suspected I had it for many months, even up to a year, prior to being diagnosed. I also had some bad sideffects to my TKI -- the first month consisted of 16 hour long headaches every time I took it, and shortness of breath is still an issue. There are other risks, but when you stand back and consider that this illness used to be a death sentence, we've come a long way.
@@jayeshaw5705 thanks for checking. I am now on the third 2nd gen tki (went through sprycel and tasigna, now on bosulif) as nothing was able to hold MMR milestone. Fingers crossed. Side effects still plague my every day life, and shortness of breath on bosulif has been worse than sprycel. Bosulif side effects seem to be a combination of both of the former and I do physical therapy daily to manage my pain. It drains my energy but it's all I can do.
@@DogHairDontCare so sorry to hear. Only God can take away this pain. I start 2nd gen tki today. Hopefully it will help. Going to try and stay positive. Hope you get better! God bless 🙏
That is a side effect you need to see your oncologist cause it can happen in your lungs and than it’s gonna be serious problem I recommend seeing your oncologist as soon as possible
My brother, who is known case of thalassemia major, who was also diagnosed with CML 2 years back, his CML resistant to imatinib, dasatinib... He went into blast crisis stage, so planned for BMT, but because of the complications he had during chemotherapy like infections, raised blood pressure with low blood counts the BMT plan cancelled.... Now he was planned for Asciminib drug, will it give remission from CML, any chance for remission.... Please reply
I'm also a cml patient and I was diagnosed during preop bloodwork for a hysterectomy at the age of 25 due to gynecological cancer I'm now 42 and just found out I'm in the accelerated phase. Where can I find the best information on the best diet to be on
How r you now ? My father was detecte CML last month and doctor prescribed imatinib 400 .. at the first the spleen had large and the CBC was 72000 after taking imatinib CBC is 56000 and spleen also solwly decreased .. After taking the imatinib my father had face side effects like muscle pain what's the solution now . We also discussed with the doctor about this matter but doctor suggest dolo 650 or termodal tablet which one doesn't respond on the muscles pain ..any suggestions if you had face ??
Went to a hematologist a few days ago and they mentioned bcuz my monocytes were insanely high that it could be possible that I have leukemia and I’m worried. I’m praying it’s nothing to serious. My WBC is fine but basophils and eosinophils were a tad high. I have high anxiety over it. Im praying I don’t have leukemia. I can’t stop crying since going to the hematologist.
I know how you are feeling. I have been having anxiety over my health for the last couple of months myself. I have been referred to a hematologist because I keep having recurrent neutrophilic leukocytosis (3rd time has showed up in a blood test since December - 13.8, highest has been 17.2). Then my WBC goes normal (like this week - 7.17). On top of that, my hemoglobin (16.4) and hematocrit (48.8) numbers are also now in the high range this week (I have been seeing the numbers slowing inch up in the last few months). And I am only .02 of my red blood cells being in the high range as well (5.38). Hoping you don't have leukemia or me having some type of blood cancer (crossing fingers).
What isthe reason for cml.i worked in crude oil ship affected by cml in 2015.my family history no one having cancer.please help me to know what makes these kind of cancer
Hi Rajendar, We are so sorry to hear of your diagnosis. Please reach out to our Information Specialists, who can help give you more information and answer any questions you may have. You can find them here: bit.ly/IRCLLS. Please let us know if you have any other questions or concerns.
I have a question. My mother for years had an issue with her Leukocyte, they were always extremely elevate despite not having any infection. Her pcp refered her to a specialist. The BCR-ABL was perform on her and it came back positive. But we were never inform until aroung a month after she was also diagnose with breast cancer and her Oncologist suggested for us to go bak to the specialist because he needes to clarify on the BCR-ABL test. We went to back to this doctor and he said that often time the BCR-ABL test can be a false positive. Since we were already dialing with her breast cancer issue we left it along. But as time progress I notice that my mom had all the symtoms associate with CML. She was tested the second time for BCR-ABL and it came back negative. Can someone be BCR-ABL positive on the first test and negative on the second test? Please help. Hope to hear from you soon.
We are so sorry to hear of your mother's diagnosis. We encourage you to contact our Information Specialists, who can help to answer a range of question, including your questions here, and would be more than happy to put you in touch with other avenues of support that you may find useful. You can reach them here: bit.ly/IRCLLS. We are sending our best to you and your family. Please don't hesitate to reach out with any further questions.
Here is what I have read and what I have experienced myself Padma - magnesium supplements help with cramping. I also believe they help with other side effects like brain fog, etc. Joint supplements that contain glucosamine, chondroitin and MSM have helped my aching knees for over 10 years, way before I developed CML. Weight training helps with my knee pain tremendously.
I also experienced severe body pain and I had blasts but then I tried healthy diet (more vegetables, and no dessert, sweets, junk foods at all) like DASH diet. Then the blasts were gone and all my blood work returned to normal. No tiring activity as well as in not over working my body.
I have myblastimic cancer just find my marrow was positive, I get bruised easy, buttttt I'm taking tasigna ,generic brand is nilonatab the tasigna is good not bad side effects at all thank for now god bless all yall that have cancer...😇😇,.I refused addictive pain meds, like now my feet get swollen and my foot is bruised but I pray n research anything I'm given,but the true fact dont be scared if you need tell the make listen if he doesn't hes not a good doc,.
Plz lower the price of new drug . Imatinib resistant patient are facing problem bcoz hight price of new drug . We all are humans and hace same emotions and feelings . God will bless you if you procide new medicine in cheap in India as well . Ascinib , ponatinib is not available here
i was diagnosed with CML now almost 4 years ago when i was just 16 years old. My white bloodcells were at 526.000 so i was rushed to the hospital and got chemo. I have tried almost every tki and they all ended up not working or have to bad side effects. I am now taking Asciminib wich wirks great and since last month my Bcr-abl is under 0,1 wich is a huge milestone for me and calmes me a lot.
Congratulations. I was diagnosed too 4 years ago when I was 26. I was responsive to Sprecyl and Dasatinib but the side effects were too heavy so I recently switched to Gleevec. Response is slower than others but working well so far. Asciminib is not approved yet where I live. I think it’s the newest drug. Hope it works magic for you.
Where are these patients now in 2022?
I have CML but I just hope the pharmaceutical companies would lower their prices. The no.1 reason for non-adherence for many CML patients is the affordability of these heavenly-priced tki's..
Prices too high india
And it just keeps going up.
It's 2019, and 30 day supply of 100mg (1 per day) is almost $15k.
Just a Fluke Indian CML generic is less than $100 usd a month
@Kyler mcdonald66 Tasigna
CBD treats my CML 500 mg daily pure cbd tincture
I was diagnosed 2 years ago in June. Been on Gleevec and Imantanib. My BCR-ABL hovers around 20. I got this from the water at Camp Lejeune, NC in the 80s. The VA is providing my chemo free of charge. I have continual dull pain in my shoulders and joints, and I get infections very easily. The first time I did, I brushed it off and was hospitalized for a week, just before sepsis set in.
Ray, Thank you for sharing. If you have any questions, please reach out to our Information Specialists, found here: bit.ly/IRCLLS. We are sending our best to you.
This is a very late reply. I hope that you well and improving. I also was diagnosed with cml in 2021 due to the Camp Lejeune water contamination. I was stationed there in 1975 and during the 1980’s. VA placed me at 100% disability. I use my private insurance for my health care. My medication is sprycle 100 mg. My doctor just prescribed 50 mg. Tests have shown it is just as effective. Take care brother. Semper go.
I'm also cml patient.. this is inspired to me...
Rei Sebi same. I'm one in four children with this disease in the U.K.
same here..been diagnosed with CML way back year 2016
Is any drugs to reduce muscle pain after taking imatinib
I was diagnosed with CML this year. In my case, I had a crap load of symptoms in the chronic phase and I probably was getting ready to enter accelerated phase because things got really rough all at once. It was suspected I had it for many months, even up to a year, prior to being diagnosed. I also had some bad sideffects to my TKI -- the first month consisted of 16 hour long headaches every time I took it, and shortness of breath is still an issue. There are other risks, but when you stand back and consider that this illness used to be a death sentence, we've come a long way.
DogHairDontCare, how are you doing now? Sorry to hear about the side affects. But you are right they have come a long way in terms of treatment.
@@jayeshaw5705 thanks for checking. I am now on the third 2nd gen tki (went through sprycel and tasigna, now on bosulif) as nothing was able to hold MMR milestone. Fingers crossed. Side effects still plague my every day life, and shortness of breath on bosulif has been worse than sprycel. Bosulif side effects seem to be a combination of both of the former and I do physical therapy daily to manage my pain. It drains my energy but it's all I can do.
@@DogHairDontCare so sorry to hear. Only God can take away this pain. I start 2nd gen tki today. Hopefully it will help. Going to try and stay positive. Hope you get better! God bless 🙏
I have been diagnosed with chronic-CML and taking imatinib 400mg but my upper eyelid is puffy and my foot have swollen so it is normal or not
That is a side effect you need to see your oncologist cause it can happen in your lungs and than it’s gonna be serious problem I recommend seeing your oncologist as soon as possible
My brother, who is known case of thalassemia major, who was also diagnosed with CML 2 years back, his CML resistant to imatinib, dasatinib... He went into blast crisis stage, so planned for BMT, but because of the complications he had during chemotherapy like infections, raised blood pressure with low blood counts the BMT plan cancelled.... Now he was planned for Asciminib drug, will it give remission from CML, any chance for remission.... Please reply
Can CML patient take fruit juice?
I'm also a cml patient and I was diagnosed during preop bloodwork for a hysterectomy at the age of 25 due to gynecological cancer I'm now 42 and just found out I'm in the accelerated phase. Where can I find the best information on the best diet to be on
How are u now? Are u okay? I was diagnosed 1 week ago and i’m 24
@@WhasabiMMM I still take oral chemo twice a day but I've been pretty sick here lately
Maybe you would like to try DASH diet. I’m currently following this diet. Best to consult with your hematologist too.
How r you now ? My father was detecte CML last month and doctor prescribed imatinib 400 .. at the first the spleen had large and the CBC was 72000 after taking imatinib CBC is 56000 and spleen also solwly decreased .. After taking the imatinib my father had face side effects like muscle pain what's the solution now . We also discussed with the doctor about this matter but doctor suggest dolo 650 or termodal tablet which one doesn't respond on the muscles pain ..any suggestions if you had face ??
Went to a hematologist a few days ago and they mentioned bcuz my monocytes were insanely high that it could be possible that I have leukemia and I’m worried. I’m praying it’s nothing to serious. My WBC is fine but basophils and eosinophils were a tad high. I have high anxiety over it. Im praying I don’t have leukemia. I can’t stop crying since going to the hematologist.
I know how you are feeling. I have been having anxiety over my health for the last couple of months myself. I have been referred to a hematologist because I keep having recurrent neutrophilic leukocytosis (3rd time has showed up in a blood test since December - 13.8, highest has been 17.2). Then my WBC goes normal (like this week - 7.17). On top of that, my hemoglobin (16.4) and hematocrit (48.8) numbers are also now in the high range this week (I have been seeing the numbers slowing inch up in the last few months). And I am only .02 of my red blood cells being in the high range as well (5.38). Hoping you don't have leukemia or me having some type of blood cancer (crossing fingers).
I know how you are feeling but whatever happens...be strong and be brave you are a fighter...
Hello am Anindita from India..and am on nilotinib from past 7 yrs
Did you experience any sort of pain during treatment mam
@@principleinstitutetelugu8274
I suffer from rashes..
That's all
what is the price of nilotinib
what is your platelate count
Great Video...
What isthe reason for cml.i worked in crude oil ship affected by cml in 2015.my family history no one having cancer.please help me to know what makes these kind of cancer
Hi Rajendar, We are so sorry to hear of your diagnosis. Please reach out to our Information Specialists, who can help give you more information and answer any questions you may have. You can find them here: bit.ly/IRCLLS. Please let us know if you have any other questions or concerns.
I have a question. My mother for years had an issue with her Leukocyte, they were always extremely elevate despite not having any infection. Her pcp refered her to a specialist. The BCR-ABL was perform on her and it came back positive. But we were never inform until aroung a month after she was also diagnose with breast cancer and her Oncologist suggested for us to go bak to the specialist because he needes to clarify on the BCR-ABL test. We went to back to this doctor and he said that often time the BCR-ABL test can be a false positive. Since we were already dialing with her breast cancer issue we left it along. But as time progress I notice that my mom had all the symtoms associate with CML. She was tested the second time for BCR-ABL and it came back negative. Can someone be BCR-ABL positive on the first test and negative on the second test? Please help. Hope to hear from you soon.
We are so sorry to hear of your mother's diagnosis. We encourage you to contact our Information Specialists, who can help to answer a range of question, including your questions here, and would be more than happy to put you in touch with other avenues of support that you may find useful. You can reach them here: bit.ly/IRCLLS. We are sending our best to you and your family. Please don't hesitate to reach out with any further questions.
i am Cml patient last 9years am taking medicene glivec 600mg . i have body pain . i can't control this pain. pls sujjest me some tips.
Padma Latha Consider split your dosage into two times a day or lower the dosage if condition permits .
Here is what I have read and what I have experienced myself Padma - magnesium supplements help with cramping. I also believe they help with other side effects like brain fog, etc. Joint supplements that contain glucosamine, chondroitin and MSM have helped my aching knees for over 10 years, way before I developed CML. Weight training helps with my knee pain tremendously.
Mujhe bhi cml h 15 years se 8817195730
I also experienced severe body pain and I had blasts but then I tried healthy diet (more vegetables, and no dessert, sweets, junk foods at all) like DASH diet. Then the blasts were gone and all my blood work returned to normal. No tiring activity as well as in not over working my body.
and not missing daily intake of prescribed medication.
Thank you for upload
I have myblastimic cancer just find my marrow was positive, I get bruised easy, buttttt I'm taking tasigna ,generic brand is nilonatab the tasigna is good not bad side effects at all thank for now god bless all yall that have cancer...😇😇,.I refused addictive pain meds, like now my feet get swollen and my foot is bruised but I pray n research anything I'm given,but the true fact dont be scared if you need tell the make listen if he doesn't hes not a good doc,.
Oh here again I have 1 stage😇😇
Hello i m nancy i suffer from the same cancer are you still alive
Plz lower the price of new drug . Imatinib resistant patient are facing problem bcoz hight price of new drug .
We all are humans and hace same emotions and feelings . God will bless you if you procide new medicine in cheap in India as well .
Ascinib , ponatinib is not available here
i thought this was a rap video
😂
Your an idiot