Howdy,
I was diagnosed last year with april 2020 with CML, my treatment is working very well at present. I didn't want to be one of those people that used the site when they needed the help then disappear when all works out. So I decided to write a post about my treatment and a few things that I found out. I have been puting it off for a few months but I owe this forum!
First of all, a warning I'm not one of those people researching CML and I'm not very knowledgeable about it. I made a conscious decision to give this sickness very little room in my existence, so don't look at my decisions as an example to follow. I know nothing. I made a choice that I found logical and it worked.
I was started in September 2020 with 800mg, by September 28th my treatment was discontinued due to neutropenia. I restarted my treatment at the beginning of november. But this time on my own accord I decided to lower dosage. Several factors influenced me. The fact that I had to fight to even be able to restart, my doctor was on vacation and he wanted me to wait 3 weeks for him to come back, also I started my treatment 4 months after diagnosis. I wanted my dosage to be optimised, it made no sense to me that my treatment could be delayed for frivolous reasons and not my we'll being(finding the effective dosage with minimal impact on my health). I won't bore you with the details but my doctors so far are very arrogant and reluctant to listen and communicate about my treatment. I tried to explore lowering my dosage on my own in this forum without success, what I received was projected fears rather than useful information. I knew that I had to take this road alone.
After the doctor's assistant suggested prolonging my hiatus because the doc was on vacation ("the doctors don't like to lose patients she said"), I was livid. I requested a change of doctor right away. I decided at that moment that I was going to find the right dosage on my own. It was now or never since my blood tests were very frequent, and I was under consant monitoring by the hospital. I started by lowering it to 600mg, 200mg 3× a day gave me my worst side effects, worst than 400mg×2 a day. So I went on 400mg in the morning and 200mg at night. Did that for a month. In December I decided to just do 400mg. By the end of December my first pcr came in and the new doc was worried, I didn't reach any milestone. So another blood test was scheduled by the end of January. I decided that it that one wasn't conclusive I would go back up. It went very well and by my next test in april I was under 1% reaching a milestone that very often takes years.
By the way this is my goal being under 1%, I do not care about being undetectable. I rather have good quality of life and 0 side effects. In September 2021 the trend was still downward, I decided to go down to 200mg and by mid November 2021 I was detectable.
So these are a few things that I learned. I had to travel a lot this year, transporting tasigna boxes around would be inconvenient. So i contacted my pharmacists and asked him if I could put the pills in containers. After calling novartis she came back with "they don't know if the pills will be stable if you do that". I did it regardless, since June 2021 basically prior to being undetectable. You can deduct what you want with that at your own risks. I took all of those pills within a month and a half at the longest after transfering them to containers.
I didn't take any supplements, I know you were going to ask hahaha. My philosophy is to keep my routine simple. Adding things that I don't necessarily need goes against that. I was waiting for it to be needed before trying. I take the 200mg pill anytime I can during the day, and I probably miss on average 2 days every month, same thing when I was at 400mg.
I also consumed food within an hour of taking the pills. And took pills within an hour of eating. I didn't turn into jello... I wouldn't eat a huge burger with fries and do that because the only time I felt weird. But i regularly snack or drink tea or even eat 15mn before taking a pill.I also once ingested grapefruit , it was a cake, too delicious I had to finish it. One has to be careful with the labels because novartis is trying to protect itself from lawsuits if one of us was hit by lightning they would put it in the side effects. We have different physiologies so be careful with what I just wrote.
Lastly I'm a 280lbs male showing that weight has no bearing in your optimal dosage, just like the label says. Frequency of intake, sex, and food intake will have more bearing on you're absorption not your stature : just as the label says! My docs disagree.
I will give you honest updates weither it ends well or not!
Take care gang and thanks for the support,
HAPPY NEW YEAR!
