Hello,
I developed a mutation (IT351) after almost a year on Bosulif 300mg.
I am given the option to do Iclusig (Ponutinib) but the side effects seem to be much worse and may shorten my life.
I was given the option for Bone Marrow Transplant. I wanted to know if anybody has this mutation and what treatment you received and any collateral damage.
Thank you
Hi Mayita,
I’m sure a few BMT patients will respond to you shortly. With the T315i mutation, only ponatinib and asciminib are potent against it. Quite frequently ponatinib is given for a while to reduce the PCR count as low as possible ahead of the BMT - so ponatinib before a BMT is an option for you to reduce the disease load before a BMT.
David.
Thank you David,
So it sounds that I will be given Ponatinib in preparation for the BMT. I hope my body can take it.
Thank you,
Hi,
In addition to Davids comments it is worth stating soon after giving approval in USA the FDA issued a so called "black box warning" largely based on the risks of vascular occlusions (blood clots),heart failure and hepatoxicity or liver failure.It is also known for increasing hypertension with some haemotologic adverse reactions .One of my previous haema-oncologists with some experience of administering this drug indicated that he always prescribed a small additional daily dose of aspirin as a blood thinner or otherwise minimal doses of heparin as a safeguard against vascular issues.
Looking at the product information there is a long list of possible side effects and appears quite threatening but like all tkis one does not end up experiencing all of them and you might end up doing quite well on the drug.I suspect that your specialist will look at you cardio- vascular history and situation and undertake careful monitoring as well as undertaking some detailed risk analysis of each of the options and for instance especially your age and the likelihood of success of the BMT.
Best wishes
John
I seem to remember reading that the new starting dose is 15 mg/day, whereas the original was 45. Hopefully the side effects are much reduced at 15 mg.
Edit: I think maybe this is what I remember:
Unless benefit-risk analysis justified treatment with a higher dose, the following dose reductions were recommended: 15 mg once daily for CP-CML patients with MCyR, and 30 mg once daily for CP-CML patients without MCyR, AP-CML patients, and BP-CML patients.
https://ashpublications.org/blood/article/132/4/393/103899/Ponatinib-eff...
Yep - officially it’s still 45mg I believe. Ariad / Incyte really shot themselves in the foot because pricing was based upon a 45mg dose.
That turned out to be too much, and their reps can only nudge nudge wink wink tell clinicians 15mg would be fine in most cases because it is not indicated at that dose.
And of course 15mg is a lot cheaper. A real lesson in pharmaeconomics! Had trials gone on longer, maybe 15mg would have been the recommended starting dose, with the higher cost that goes with that
But it’s beside the point. It’s an excellent drug to have in the arsenal against CML.
David.
