If you have a long established MMR (even if you are not quite MR4) is there any reason at all not to ask our Oncs about dose reduction? Putting aside the dream of TFR if we can maintain with less of this poison in our bodies shouldn't we? Has anyone asked their doctors about this since the DESTINY study?
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Dose reduction for everyone (MMR and lower)? DESTINY study.
JPD, I'm a strong advocate of gradual dosage reduction as early as possible, which includes plateauing, or becoming rangebound, at a low CML level (less than 1.0), for a prolonged period of time, the average being a year, or so. link to my profile page Buzzm1
When plateaued, or rangebound, the CML level will typically drift lower over time, regardless of dosage. Gradual dosage reduction typically will not adversely effect the CML level.
Ive been somewhere betwee .04 and .01 for about 5 years. And thats on full dose of Tasigna. Ive tolerated it pretty well, but my billirubin ticks up occasionally and I worry about what it long term does to your heart. I know a TFR may not be in the cards but if I could halve my dosage that would be a wonderous thing.
JPD, you should absolutely talk to your onc about gradual dosage reduction; first to 450mg, then to 300mg, followed by 200mg, or perhaps 150mg. You've been taking far more TKI than you have needed for years.
Wishing you the best,
PS: the Bilirubin uptick is not unusual; it isn't considered serious.
Hi,I had been undetected for nearly 18 months and no way would my doctor allow me to reduce my dose of Dasatinib to 20 mg ,so I have been very naughty and done it myself, 6 months later and I am still undetected .I would be on 100 mg if Doc s had their own way but I insisted starting on 50 mg .I have back pain and need to take painkillers now and then but am worried about over loading my liver ,so that's why I decided to reduce my dose .So keep on at you Doc ,mine isn't a CML specialist maybe yours isn't either and they don't keep up with research ,Good Luck .
Once I learned CML is a slow disease in chronic phase tied to blast cell count, I realized I had time to experiment with dose. When I mentioned this to my primary doctor who diagnosed my CML he disagreed with me. When I switched doctors to one of the top four CML researchers in the world, this doctor said it was worth a try. Who was correct? Both are credentialed - one is a practicing oncologist, the other a researcher in the field.
Drug trials are designed first and foremost for safety and second for efficacy. There is a misguided belief the more drug one can take before toxicity is the best dose. And this is not often true. Over time after a drug is approved, trials still continue to identify nuances in trial participants as well as continued efficacy research. Much of this is done to expand a drugs use profile (i.e. approved for children, etc.). Drug companies tend to want the most drug to the largest number of patients to be sold. Non-specialist doctors will simply follow the original published guidelines because deviating from them exposes them to risk. Someone else needs to act on new research results, not them. This is why I strongly support patients to learn all they can and to be informed and not rely on their doctor alone. Doctors are not magicians or even experts. They are people who have training to diagnose and treat. In both cases they can make human mistakes and be wrong.
I have often said and continue to say that people on this forum, collectively, know much more about CML's treatments, side effects, and related than most of the practicing CML oncologists. We live with the disease, they don't. It all depends on the confidence one has with their own ability to learn and apply scientific knowledge. With knowledge comes confidence to discuss with your doctor as partners in deciding a pathway forward. If I ever disagree with my doctor and he or she is unable to convince me why I am wrong, I find a new doctor. In CML's case, I found a specialist in the field.
You are not 'naughty', Felix, you are taking care of your life. It's your life, not his.
The bilirubin was .03 and 1.4 (total) which my oncs dont even bat an eye at. Next time I get it tested it might be low normal. I am wondering if when I take my Tasigna has anything to do with it or my level of hydration? Im not *worried* about it but knowing would be nice.
EDIT: looking around the site, it seems UK normals are up to .03 and 1.5 so if I lived there it wouldn't have even flagged.
I dont go to my Oncs for another month but Im 100% gonna (almost) demand a reduction attempt. Will for sure let you know when I reduce!
JPD I’m currently on 300mg once daily as I was having big problems with pancreas on 300mg twice daily. I’m currently at mmr level but hoping to reduce the dosage ASAP as although the majority of the side effects for most of the time are tolerable they can be troublesome. I know this is better than the alternative choice we get not having meds but I do get concerned about the progressive problems caused by remaining life usage of them.
The UK CML Destiny Trial only halved the TKI dosage leading some of those who failed TFR to mistakenly believe that they need that half-dosage to maintain undetected, when, in fact, a much lower dosage will achieve the same results.
PS: In addition, it has been shown that TFR failed CML patients only need a low dosage to regain their undetected status, not the full dosage as specified in the The UK CML Destiny Trial.
shweflen prior to TFR attempt, on Imatinib 300mg
11/17/2020 BCR-ABL:ABL = 0.026
11/24/2020 restarted on 100 mg / day imatinib (onc recommended 300 mg / day)
12/14/2020 BCR-ABL:ABL = 0.012
02/16/2021 BCR-ABL:ABL = 0.004
03/01/2021 started 100 mg imatinib every other day
03/15/2021 BCR-ABL:ABL = Not Detected
Hi I’m so interested to hear about this as I’ve been on imatinib for 10 years now always had a good response and only deal with a pharmacist ( about 3 /4 yrs +) ..My last pharmacist asked me if I wanted to go drug free which I was up for totally.(.I’m very forgetful nowadays anyway ie not regular.taking it) and my results are always really really low from undetectable to 0.005.the pharmacist said they were debating whether I’d be monitored on the Wirral or Liverpool.Then nothing more said and then COVID crisis happened so it all took a back seat..I now have new Pharmacist I asked him about going drug free or even reduced dose but he didn’t seem up on it at all saying he thort people had to be undetectable for 3 years consistently.. so I’m confused.Can I ask to be referred to. CML specialist?
Hi Joflo,this all sounds very strange to me you only deal with a pharmacist and not a doctor never heard that before .How much do they know ,do they keep up with new research .I am on the Wirral My Doc isn't a CML specialist but I saw one at the Royal Liverpool and he was horrible so don't go there .Hopefully the New Clatterbridge Centre in Liverpool might be better for you .
joflo, ten years is a long time to be on a full dosage of any TKI. The less TKI we take over the longterm the better off we are likely to be. Missing doses doesn't lead to good statistics. Since you are intermittently testing positive you are not in a position to attempt TFR. The Stop Trials all required at least two years of contiguous undetected to qualify. However you can begin to reduce your TKI dosage, first to 300mg.
Hi there yes I know there’s a few others who just deal with pharmacist..not unusual nowadays probably a resource issue . I don’t mind just seeing the pharmacist as I was only ever with the consultant for 2 mins as given they’ve had me on the books for 10 yrs and they gave more serious caseloads.. I think the pharmacist links in with my consultant but I agree I’m not sure they are that up to date with criteria for the latest protocols.. Oh so u didn’t see the professor there ? given it’s a centre of excellence in Liverpool. I know professor Clarke said when I was fiat dx I cud go to him if I wasn’t happy with my Wirral service...
Hi Buzz thanks so much for this yes 10 yrs is a long time and ur right given I’m not good at taking it these days they are probably using it as stick rather than carrot method to not progressing me to drug free.. but I think ur right I should at least be reduced ( I’m doing that myself effectively and probably doing drug free largely) ..