Hi everyone, After 6 months on Imatinib, and a 2 week break, i have today started on Bosulif. Does anyone take their TKI at lunchtime?, i do , because i have to, but i often wonder if its not the best time, and if evening, and therefore sleep is better for absorption, i could make some changes. Also, are there any sort of common remarks or observations about Bosulif that i could be made aware of, im so sick of reading rubbish on Dr Google, im anxious enough about everything without that! Im very grateful for any advice, regards, Manda
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Still learning, Bosulif advice
Hi Manda,
If I remember from when I was on Bosutinib in 2018, the Patient Information Leaflet at the time advised to take the tablets with breakfast. I've always taken the various TKI's I have been on in the evening after a meal since I find the side effects are more manageable. I mentioned this to my Consultant at the time, and they were happy for me to take it in the evening. It is important, however, that you take it with food and around the same time each day.
I don't want to alarm you about Bosutinib, but make sure you have regular Liver Function Tests and ask what the results are. I had to come off Bosutinib after 4 months since my AST/ALT (liver enzymes) levels rose too high. On the plus side I did reach MMR on Bosutinib and I never experienced the dreaded diarrhoea (in fact only Dasatinib caused this problem for me).
I hope Bosutinib works well for you.
Take care,
James
Thank you so much James, i need to stick to learning from forums such as these so i really appreciate your time. I will soldier on, i was doing well on Imatinib, until 5 months in i started to experience really bad skin and eye problems, so we will see. I have a very good Consultant who listens! Thanks again, very best wishes.
Hi Zoran, i take 4x100 mg daily. Are you on Bosulif?
Regards, Manda
Hi Manda,
Yes, I started Bosulif mid December 2024. Here is a couple of important notes I learned about it:
1. It takes time till it starts working and till you see measurable results. In my case it was probably 4 weeks, so do not rush with dose escalation. As you are on 400 mg I think there is no need to increase it.
I started 1st week 100 mg, 2nd week 200, 3rd week 300 and since I haven't had any issues and I was already 2 months on only 1/2 dose Asciminib and my wbc strated rising, I increased to 400 mg. 3 weeks later I started experiencing adverse effects, first mild and then severe.
2. It takes 7-10 days to stop working, so if you see something strange in your test results, don't wait too long to react (stop or reduce the dose). In the 7th week I suffered thrombocytopenia, anemia and a massive tooth infection. I actually stopped taking it when the tooth infection started worsening, the swelling started growing. The day I stopped taking it, my platelets were 43 and a week later they were 25. So it seems, certainly depending on the person's metabolism, it accumulates in the bloodstream and it takes unusually long time to clear out. I say unusually long time as I was on Imatinib, Dasatinib, Nilotinib and Asciminib and I have never seen this nor I read about it in Pfizer documentation or any research paper on Bosutinib.
3. I don't think it makes any difference when you take it and they recommend to take it with food. I tried it without food and it makes you a bit nauseous, but way less than Imatinib. What I found is that plasma concentration increases significantly with food:
200 mg with food is like 450 mg without food.
400 mg with food is like 650 mg without food
https://pubmed.ncbi.nlm.nih.gov/21691746/
https://www.cancercareontario.ca/en/drugformulary/drugs/monograph/44371
https://sepia2.unil.ch/pharmacology/parameters/areaunderthecurve/
So if you turn out to be over sensitive like myself you may need to reduce the dose, especially if you take it with food. I find it very strange that such info was not shared by Pfizer considering the severity of potential adverse effects, how fast they may develop and how long it takes for the medication to be removed from the system.
4. You should also monitor for the signs of liver problems "alanine aminotransferase" and "aspartate aminotransferase" as these seem to go up in many cases. For me these have been unaffected so far.
https://labeling.pfizer.com/showlabeling.aspx?id=884#S5.3
I'm now off and waiting for my cells to recover, then I will restart at 100 mg and then maybe 200 mg and see how it goes.
Good luck
Zoran
Hi Zoran,
Wow!, thank you so much for all that information, and for relating personal experience, it makes such a difference to me swimming in the sea of misinformation!
I need to take notice of quite a few things as i progress with Botulif, as you have done before me. I did wonder if i was hurtling into 400 mg from the outset, but i have complete faith in my Consultant Haematologist, and apart from now taking 4 tablets instead of 1, which was a bit of a mental tussle, im ok.
Would it be ok if we kept in touch? Good to share experiences.
I hope you have a happy, healthy day, Manda
Hi Amanda,
I haven’t recovered yet, so I’m taking Dasatinib to bring wbc down as it doesn’t affect platelets, and something for uric acid which is now normal.
My platelets started slowly recovering, today they are 56, but erythrocytes are still not improving.
Neutrophils are very high, but it’s not clear why, they tested me thoroughly for infections, but didn’t find anything.
Funny thing is when hemoglobin fell to 10 I slept for 2 weeks, then it fell to 8, but now I feel better, just can’t walk for very long.
I‘ve been coughing up blood, but not much, mixed with mucus. They did CT of lungs, but couldn’t figure out what‘s going on. I hope it goes away once platelets improve.
I think the full picture is a bit too complicated and undocumented, so they say stick to Dasatinib and wait. I now test weekly and it looks it’s improving, no need for transfusions which they basically advised against unless some red lines are crossed.
I hope to stabilise soon, then to add interferon and see how the combo goes.
How are you doing?
Zoran
Hi Zoran, yeah that all sounds a bit of a mess, i can only hope you settle sooner rather than later, we will keep in touch i hope. I cant give you any numbers, to be quite honest my Consultant understands my slow learning curve, and is concentrating on stabilising me on Bosulif first and foremost. So..... I took 400 mg for about 10 days, then , as you warned me, the dreaded diarrhoea set in, big time, very big time, i was so ill and dehydrated, no appetite whatsoever for days. Both my local surgery and Haematology stopped me taking them , took me days to get anywhere near better, had 12 days off, then started on 200 mg on the 14th Feb. So far so good, but a blood test has noted liver markers up which my Consultant has a watching brief on, another test soon, so we will see. Im obviously concerned, would really like to stay on these meds and start getting my numbers going the right way. The days can be so different, today i managed a walk on our local fells with my dogs, tomorrow i might just feel like watching rubbish telly all day, who knows?! I hope for better things for both of us. Very best wishes to you .
Hi Amanda,
I’m sorry to hear you too experienced adverse effects and had to pause. Maybe lower dose works better for you. I‘ve been also thinking of maybe alternating between e.g. 2 months Dasatinib and 1 month probably 300 mg Bosutinib since Dasatinib kept me stable in 2023, but bcr was dropping only 5% every 2 months.
Considering how Bosutinib hit me, it could be a sign of potentially a good response if I continue with it. I suspect I have an unidentified mutation, as mutational tests are not 100% reliable, and Bosutinib is effective against a long list of mutations.
Just hang in there, I hope it gets easier for you.
All the best and good luck.