What side effects do you have as a CML survivor? Please share in the comments below.

@shubhamjangam718

Жыл бұрын

Hi I found CML in just 2.5 month before.. Now taking imatinib 400 mg. Once a day, now may CBC count is normal after treatment Can imatinib stopped after some time??

@healCML

Жыл бұрын

@@shubhamjangam718 That is great to hear that your CBC is back to normal. It is possible to stop taking your medicine, but it will take several years. Here is a video on the requirements: kzread.info/dash/bejne/q4icpZWJkcazg7w.html

@XX-fl4zg

5 ай бұрын

⁠@@shubhamjangam718it can be put into a trial period to judge molecular response and multiplication rate. So once deemed “undetectable “ or NED(no evidence of disease) could be put into said trial and monitor your CBC. This will vary by patient. I have been on Imatinib for 14 years now in May but I have just been tested to see if I have built up a resistance to the drug. I have Chronic Myelegenous Leukemia so it may very but usually the treatments can be interconnected based on your particular reposes to TKI inhibiters. The main thing to take away is just always be aware of your side affects and keep in close contact with your oncologists about any side affects. They know the tricks to manage them. Good luck to everyone. Make it your b*****!

I started Tasigna 300 mg twice daily in December 2020. My bcrabl is now at .004 so im in remission. Currently on chemo break due to an intense rash. My side effects have been: increased bone and joint pain, (disabled by Parkinson's and ehlers danlos syndrome before the cancer) night sweating, some hair loss, fatigue, nausea with occasional vomiting, chest pressure, diarrhea/constipation and rash. Hoping to go back at a lower dose after the rash goes away (I hope). The rash is basically everywhere. Congrats on going treatment free. May you stay that way. 💜

@healCML

3 жыл бұрын

Thank you for sharing your experience and congrats on getting into remission! The lower dose after the break sounds like a good idea. I had night sweats before diagnosis and also occasionally while on treatment. When I had them on treatment I always worried that it was a sign that the CML was coming back. Hopefully the rash goes away and you can get back on the drug soon!

@nrfnrd

2 жыл бұрын

I will b on 3 pills a day next week.

I was diagnosed of CML early 2020. However I started my treatment on GLIVEC late 2020. The side effects I experience immediately was fatigue and severe arthritis pain on my joints. I immediately stopped all forms of refined sugar, increased my intake of green leaves smoothie with cucumber, lemon,kale. Also I had a naturopathic treatment on the arthritis with pepper wraps on all my joints. These greatly improved my bone density, fatigue stress and general wellbeing. I found out within 3 to 6 months of 400g GLIVEC and all I mentioned above the WBC reduced drastically, the neutrophils aggregates in my FBC reduced drastically below 1%. Am able to go back to my exercise routine of 5000 to 8000 steps 5days to 6days a week. I realized cutting off refined sugar completely from my diet helped me greatly and also GOD ALMIGHTY mercies which can not be underestimated

@healCML

2 жыл бұрын

Thank you so much for sharing your experience! I am happy to hear that the improvements you made to your diet have helped with your general health and your CML. Refined sugar is something that can really cause a lot of issues, but I don't think enough experts talk about those issues. Also great to hear that you are walking most days of the week! That is important! -- Stephen

@chinyerejane5072

Жыл бұрын

Thank you so much for sharing, my husband diagnosed same year march 2020 and started taking glivec against 2020, and he improved, but now his spring start enlargement, am confused I don't know what to do I need help and advice

Thanks so much for sharing, sending healing prayers 🙏

@healCML

2 жыл бұрын

Thanks so much. Same to you! Please take care!

First year in my treatment I recover fastly

Well put together information

I am gaining weight gradually and fastly 70kg to now 117

I started on Gleevec in 2018 then was put on 400 mg of Tasigna on April 29 2021. So far, I've had a lot of muscle pains & charlie horse type cramps in my feet, legs, arms , & stomach. The first few days I had a lot of inflammation. I've been fasting & drinking a lot more water to fight the inflammation. - Aside from water, what helped you w/ the arthritis type pain?

@healCML

3 жыл бұрын

I had the arthritis pain after I had gone off the drug. It went away after a few weeks. Usually these type of symptoms take a few weeks to go away as the body adjusts. Good luck with the transition to Tasigna. Hope the pain goes away for you soon. Please don't hesitate to ask any other questions.

I'm on my second month of treatment with Imatinib. Wbc drop from 47k to 3.3k. Now just concerning it may continue to go down. Did you get sick when your wbc dropped below normal?

@healCML

Жыл бұрын

My WBC did drop for a couple of weeks at the beginning of treatment. I think it got down to 2. They did not stop my treatment though and it very quickly started to go back up. I didn't get sick but I did take a few extra precautions with food. I made sure to make sure most of the vegetables I ate were cooked and I only ate fruit that I could peel. This was done to reduce the likelihood of getting a bacterial infection from any of the food. Have you discussed with your doctor if there are things you need to do? - Stephen

I will be starting with tasigna 300mg x 2. Praying for mild side effects with the medicine.

@healCML

2 жыл бұрын

Thank you for commenting. Sorry to hear about dealing with CML. Yes, hoping you do ok with the Tasigna side effects. If you do get some side effects, be patient as some of them can get better over time. But also, please share any side effects with your doctor. Good luck! Stephen

@ofeliarouillard5992

2 жыл бұрын

Me, hopefully I shall start to tasigna soon ( I live in a country where it is not yet available). And I shall start as well with 300 mg × 2. Praying for you and me to have mild side effects!

I am a cml patient

I m recently diagnosed this disese so what i do i am taken600 mg nilotinib than joint pain and more hair falling what I do to stop hair falling

@shubhamjangam718

Жыл бұрын

Hi am also diagnosed with 400 mg imatinib can you share me your experience.. I found CML just 3 months before

Sir mam please tell me whats kind of take food and how to do work in office ...i m feeling always weakness i cant better feel like before so i m worried ... How to feel better tell me...what kind of food is good for CML

@healCML

2 жыл бұрын

For food, it is important to eat fruits and vegetables and grains. As your body gets used to the medicine, hopefully the weakness goes away. It could also be that your blood counts are low -- so please mention this to your doctor. Make sure you are finding ways to stay relaxed, such as with yoga, meditation, or good sleep. - Stephen

Hi Stephen My weight of body is gained rapidly what I do please tell is this tasigna side effect

@healCML

Жыл бұрын

It may be a side effect of the drug, although it is best to speak to a doctor as there could be something else happening.

My husband cml ap he start nilotinib but resently har wbc low.. kindly suggest

@healCML

Жыл бұрын

Sorry to hear about your husband's diagnosis. It is common for WBC to get low at the beginning of treatment. You need to watch the number a bit and hopefully it will go back up. Please ask your doctor what to do if the WBC does not go back to normal. - Stephen

3rd year in treatment tsignia

My husband cml ap patient and will be fine.

@healCML

Жыл бұрын

Sorry to hear about your husband's diagnosis. I do not know much about the advanced phase. Wishing all the best for you and him.

Mam please tell me how to stop.my hair loss to take nilotinib600 mg

@healCML

2 жыл бұрын

Here is a video I did on Tasigna and hair loss. kzread.info/dash/bejne/lH2Wo7GOqJayZLQ.html I lost a little hair but not all of it. If you are concerned about hair loss you should definitely speak with your doctor. All the best - Stephen

Itchy rushes after taking hydroxyurea.

@healCML

2 жыл бұрын

Sorry to hear you are dealing with itchiness and rashses after taking hydroyurea. Usually you only have to take that for a few days in the beginning to get the white blood count down. So if that is the case, then hopefully you will not have to deal with that side effect for long. I would talk to your doctor to see what suggestions they may have. Good luck and keep us posted!

Tasigna is causing heart failure/defects for me, I as well have C.M.L., I also had a Coarctation of the Aorta when I was 2. I am now 31 years old. THE TASIGNA is KiLLiNG ME

@healCML

2 жыл бұрын

We're so sorry to hear that you are dealing with this. Tasigna can definitely impact heart function. Hopefully you can speak with your doctor very soon if you haven't already to talk about these issues. There are other TKI options, and that would have to be a conversation between you and your doctor. Sending you all of our best wishes, Amy and Stephen

@thecultleadersthoughts2519

2 жыл бұрын

@@healCML Upstate New York is horrible All the doctors care about is the money and how many visits they can get out of their patients they don't answer ANY questions Sorry but this is the truth At least here where I currently am I think people need to know that you shouldn't give up on your 1st doctor doctor you should always get a second opinion even a 3rd or 4th But wow thank you for answering back Good luck to you and all your family You spread Hope. ❤💔❤🤕😮😮🙂🙂🙂🙂

@healCML

2 жыл бұрын

@@thecultleadersthoughts2519 We agree with you so much about the importance of getting additional opinions! We hope you will be able to find a doctor that communicates better with you and that you can build a relationship with. Thank you for your kind words. Wishing you wellness and healing, Amy and Stephen

Whey the color of the skin is turning pale CML patients

@healCML

3 жыл бұрын

The pale skin can be due to anemia, or low red blood cells. This article explains more: www.healthline.com/health/chronic-myeloid-leukemia/living-with-cml/effects-of

But now slow

I worried about it

@healCML

2 жыл бұрын

Thank you for sharing your situation. I did not experience weight gain during my treatment. I would definitely talk to your doctor about that. How is your PCR (bcr-abl test) doing? Are those numbers still going down or is it flat or increasing?

@nosheennoman3625

2 жыл бұрын

@@healCML incresing

@healCML

2 жыл бұрын

So sorry to hear that Nosheen Norman. Please discuss with your doctor the best things to do. Maybe your doctor can run a mutation analysis to see if you need to be on a different medicine.

@anupamtiwari31

2 жыл бұрын

@@healCML sir is missing one dose of tasigna on any day affects the treatment? Is it harmful?

@healCML

2 жыл бұрын

@@anupamtiwari31 If you miss one dose it is fine. Just try not to miss a dose many times. I think over 8 years on Tasigna, I missed maybe 5 total doses. If you miss a dose every week or every month, that is not good. If you miss a dose once a year, that is ok. - Stephen

Rashes