Hi I hope you and your family are well, My partner was diagnosed last month and we started treatment on Monday, we are in an early stage of cml(wbc 33 at diagnosis and blasts 2%) my partner was prescribed 100mg dasatinib alongside allopurinol for the first few weeks. I suppose it's too early to observe any side effects as of now, but fatigue and headaches are starting to appear and we combat that through taking painkillers(codeine) and naps during the day, she already drinks about 3litres of water daily. We are both 22 years old and are planning to start a family in 5 years time or in the near future, and hopefully she will be able to attempt putting away dasatanib by then for the duration of the pregnancy and hopefully forever. Your videos are definetely helpful and we gained a lot of knowledge from them and useful tips. We have a couple of question- Did you take any supplements during your treatment, that you believe that worked or had a positive impact on yourself ? We currently take Curcumin c3 complex of up to 8g daily, Vit B complex, Selanium 200mg(or we try to get it through consuming brazilian nuts), Zinc 25 mg, Vitamin D3 (5,000ui with K2 200mg) and Magnesium citrate and malate. How did you combat tiredness/fatigue? - We know you mentioned that it went away after a few weeks and you also took naps. But have the fatigue come back later during your treatment? We are also very interested in nutrition, did you follow any diets or perhaps foods you avoid? We believe that having the correct nutrtion alongside with correct supplementaiton can enhance/increase the effectiness of the TKI, aswell as combat the side effects. We tend to avoid eating foods in which we are unsure of the ingridients and tend to avoid unecessary carbohydrates such as pastas, processed cerals candies etc... and eat whole foods. Any other tips that you believe that lead you to a succesfull attempt at TFR? Looking forwards for your reply and all the best :) Kamil

@healCML

2 жыл бұрын

Hi Kamil, Thank you for contacting us and sharing you and your partner’s story. Here are my answers/comment to your questions: -I didn’t take any special supplements during treatment. I don’t think there is anything wrong with taking supplements. But you might want to check with the doctor to make sure there is no drug interactions. -My fatigue never came back later in treatment; I was only fatigued for the first month or so. Your partner might be experiencing fatigue as a side effect to allopurinol and also because of the imbalance in the blood caused by CML. If you aren’t already, we suggest keeping detailed, daily notes on the side effects that your partner is experiencing so you can discuss with the doctor and also to build awareness to how her body is reacting to the drugs/disease. - It’s excellent that you are focused your nutrition! We agree with you that nutrition is very important. We no longer drink alcohol or soda. And like you, we avoid processed foods and too much sugar. (Though I am not perfect). Mostly we eat whole foods and grains. We do eat meat, but usually not a lot at each meal and never deli meat or sausage. -Here’s a video about some important things to think about to qualify for TFR. kzread.info/dash/bejne/q4icpZWJkcazg7w.html What helped me achieve TFR was following a daily health routine that I explain in these two videos. kzread.info/dash/bejne/l3lmo7VsfpCZdNY.html kzread.info/dash/bejne/ha2dlbqehpXemLw.html -The caregiver (YOU!) has such an important role, and it’s obvious you are doing a great job supporting your partner. Please write back if you have additional questions and we are happy to help. We wish you the best of luck and hope you will write to us in the future and tell us how you and your partner are doing. Stephen