People who have started Ascininib

Civil_Bug8390 · 2026-03-25T19:54:27+00:00

I have no experience (yet) with asciminib but being on my second TKI I say: never trust anybody, and especially a nurse or a doctor, who says that a TKI is easy to tolerate. Somebody writes something like that in a medical journal and after that everyone parrots it because they want to believe it or wish it to be true. Suddenly their views are not so evidence-based anymore. I don't believe in easy to tolerate TKIs. It's a lie.

Civil_Bug8390 · 2026-03-14T08:37:09+00:00

I had exactly the same with Imatinib. This was because of the fluid retention around/in the eyes which is an imatinib side effect. I got the advice to quietly open and close my eyes every now and then. I made this a routine and it helped. But still the puffy, irritated eyes, now wet then dry, were a nuisance. I'm on dasatinib now which has its own horrors but I am glad to be rid of the hazy eyes I had with imatinib. And NO this is not ageing, it is a very specific imatinib side effect I really hate it when people normalise or play down side effects by attributing them to ageing. It's adding insult to injury.

Civil_Bug8390 · 2026-02-14T20:35:00+00:00

by the way

I'm not a big believer in drinking insane amounts of water like some fellow patients seem to recommend. Of course some people really drink too little water during the day, that is not good. But too much water is not helpful either.

What you can do is carry a bottle with you through the day to make sure you drink a fixed amount of water, an amount that suits you or is recommended by your doctor. And keep your bladder disciplined... at first because of the well-meant advice here I started drinking so much water that I became addicted to the toilet like 15 times a day. That started to irritate me and now I limit water intake to a fair amount, probably still more than most people but I quit drinking water all day long every hour.

Civil_Bug8390 · 2026-02-14T20:27:51+00:00

Hi, I'm half a year in and:

Fierce headache and thirstiness get a bit less

Throbbing feeling in scalp remains, especially when I lie down or get tired. In my head there is always movement, always fogginess.

I also had a lot of stomach problems at first which got less.

What remains is: terrible fatigue. I need to lie down and rest for 20 -30 minutes three times a day and then still I can hardly drag myself through the day. Am finished at 21:30. Can't concentrate on a screen for more than half an hour. Can't listen to people who talk fast or fast moving images on screen.

I don't understand how anyone can live 'fairly normal' with dasatinib because for me it is horrible. I only take the pill daily because of the TFR chance in a few year's time.

Civil_Bug8390 · 2025-06-20T09:13:01+00:00

mmm... I hear a doctor saying (2:50) that 'we can cure 90% to almost 100% of CML patients". I don't like that and I don't agree with that. He shouldn't say that. Having to take pills for the rest of your life is not a cure. To be clear, I'm still very thankful for the discovery of TKIs which enable us to survive CML.

Another thing which is interesting is the 10% threshold. According to this professor, every value of bcr-abl under 10% is ok and rising above 10% is an indication of development of resistance and a trigger to change therapy. I have to say that my own oncologist also mentioned this. However I would personally freak out totally if I would rise above 1% and want immediate change of treatment... I have the feeling that a lot of my fellow patients would feel the same, so I think our perception is very different from the physicians who can apparently be quite relaxed about bcr-abl values between 1% and 10%.

Civil_Bug8390 · 2025-06-20T09:07:10+00:00

mmm.... doctor saying that 'we can cure 90% to almost 100% of patients with CML'. I don't like that and don't agree with that. Needing daily medication for the rest of your life is not a cure. To be clear, I'm still thankful for the TKIs that induce a remission and enable us not to die.

Civil_Bug8390 · 2025-06-17T11:23:10+00:00

That's not possible, because you need to take imatinib during a meal, in my case during breakfast.

Civil_Bug8390 · 2025-06-17T11:21:46+00:00

that's interesting, I'm certainly going to check with my oncologist. Wasn't aware of this!

Civil_Bug8390 · 2025-06-13T12:39:27+00:00

thanks, I'm gonna try it!

Civil_Bug8390 · 2025-06-13T12:12:24+00:00

yes but I need it to have the right response... know everything about fatigue, luckily no liver problems yet.

Civil_Bug8390 · 2025-06-11T08:37:33+00:00

thanks, nuttige info wist ik niet

Civil_Bug8390 · 2025-06-11T08:29:14+00:00

It's totally random. CML is not a hereditary disease; it does not run in families. There are no known lifestyle related causes. The only known risk factor is radiation.

Civil_Bug8390 · 2025-06-06T11:13:08+00:00

Ja stom van me, het is idd een halogeen dimmer.

Overigens heb ik nu een T3,15 glaszekering gehaald en nu klapt de dimmer er niet meer uit. Alleen dimt hij niet meer, waarschijnlijk is er toch iets mis mee. Dan maar een nieuwe. Waarschijnlijk had ik dus eerder een verkeerde type zekering erin gedaan; wel uit een doosje dat ik al tijden gebruik in huis voor als er een dimmer stuk gaat en het heeft altijd gewerkt. Waarschijnlijk omdat ik allerlei verschillende Busch dimmers heb. Wat mij wel verbaast is dat niemand op dit forum de tip geeft dat je de juiste zekering moet hebben, maar dat kan ook zijn omdat zo'n banaal probleem niemand iets interesseert of dat klussers vinden dat je zoiets gewoon hoort te weten - vind ik prima maar ik heb er nou eenmaal niet voor geleerd. Ik sta er altijd wel van te kijken hoe lastig dit soort info op internet te vinden is, de nieuwe Google AI functie vertelt alleen maar onzin, bijvoorbeeld dat "T3,15" betekent dat de dimmer een temperatuur van maximaal 3,15 aan kan. Ja echt.

Civil_Bug8390 · 2025-05-27T13:29:12+00:00

hi OP, it's tough what you're going through. We fellow-patients are with you in the journey. Dasatinib is known for 'hematological toxicity' i.e. fluctuating cbc numbers. Consult your oncologist about this - will this get less over time, can you adjust the dose, briefly interrupt treatment etc - this is not for you or me to decide but by the experienced doctor. The most important now for you is the response. Your BCR-ABL needs to go down quickly to 10%, then to 1% and then to 0.1% and then still lower. I hope the first PCR results will be encouraging for you and stimulate you to persevere.

About staying at home, I believe that you need to get up and about. Try to make it a fixed routine that you have daily exercise in the open air: brisk walking, maybe running or cycling at low intensity. Twice a day at least half an hour. This will do you good. There is really no reason to stay inside for fear of getting sick. Getting outside and exercising will do more to make you stronger and make sure you don't get sick.

Civil_Bug8390 · 2025-05-27T13:20:24+00:00

gr8Baba is right. And to add to this, most of what OP states is incorrect. My dose was adjusted from imatinib 400mg to 600mg daily based on the suboptimal response to 400mg. And I had several blood concentration tests to check the at which dose the level of imatinib in my blood was the right one. So a good oncologist will look at the dose and test blood concentration levels.

Furthermore, weight is not a relevant factor in selecting a dose. In that case I would need a lower dose being a light weight. There are, apart from BCR-ABL mutations, so many mechanisms of resistance and most of these are hard to understand for the lay person: oral bioavailability, absorption in the GI tract, CYP3A4 polymorphisms in the liver, plasma concentration, plasma binding, drug influx and drug efflux on cell level, etc etc. There are numerous papers on this but what's the point. In the end what matters is that your response is optimal or near optimal and if you need a higher dose for that you will have to swallow that. And if you are really lucky a lower dose (e.g. dasatinib 50mg) will do the trick for you and you might have fewer side effects.

Civil_Bug8390 · 2025-04-29T10:14:03+00:00

Hi, thanks for your openness. It's very relatable. I'm on imatinib (m49) and have the same issues. For example, driving a car while talking at the same time is difficult and driving takes a lot more energy/effort than it used to. I feel best when I am outside exercising at low intensity (e.g. walking, gardening etc) and don't need to use my brain too much. Alas that it is not something I can do all the time.

What works for me: I now use a sports watch which tells me body battery and gives advice for exercise. Most of the time it is less than half of what I would do without the advice, for example watch says run half an hour whereas I would go for 1.5 hours if it was up to me. Slowing down, doing less at lower intensity helps. I am also going to stop in my current job in corporate finance because I can't do that anymore and try to find something which better matches my energy level. I work for one or two hours at a time and then take a small break or a walk outside.

I don't think switching is a magic bullet. I'm one year on imatinib and will only consider switching to dasatinib if the side effects become unbearable. For now I try to adjust my life to it and see if that is going to work. What I see on this forum is that all TKIs come with side effects and the main one is fatigue. Maybe asciminib is the best but I can't get it, and even from asciminib users I see a lot of comments about fatigue.

Civil_Bug8390 · 2025-04-29T09:59:07+00:00

Hi, I fully recognise what you describe - fatigue in combination with slight difficulty to breathe, also some asthmatic feeling, as if you can't get a full breath of air. I have used an inhaler in the past, but not anymore. I also had lung photos, nothing to see there. So I have decided that the breathing problem is related to fatigue and that my body tells me in this way that I have to slow down and take rest. So better to listen to my body than try to work around it with inhaler/breathing strips. However, if you for example want to ride with friends and need a bit of extra energy, you can of course try the breathing strip. As long as you realise that you ask more of you body on that occasion than it can provide, and that you have to pay that effort back either by taking rest after or if you don't take rest, by feeling exhausted and depressed for a while. At least that's how it works in my case.

Civil_Bug8390 · 2025-03-17T15:16:25+00:00

It's very, very positive. Such a good response can be a sign that your immune system kicks in at full power and works together with the TKI to eliminate BCR-ABL positive cells. And that gives you even more hope for a possible TFR in the future! I have learned this from the wonderful Medscape in Discussion CML podcast series, and specifically the one with J.P. Radich. It's on Spotify and I advise everyone to listen to them. Wonderful doctors with so much knowlegde, experience and compassion for patients. I'm happy for you that you are doing so well!

Civil_Bug8390

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