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CML - Scemblix quit working
My husband was diagnosed with CML last October and was taking Scemblix which appeared to be working until February. Now his bcr:ABL1 is trending up and the doc wants to prescribe Ponatinib which has super scary side effects. Is anyone taking this and if so can you share your experience?
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Hi @penni123. While you’re waiting for other members with CML to reply about their treatment with Ponatinib, I want to welcome you to Mayo Clinic Connect.
I’m sorry to hear that your husband’s current treatment with Scemblix isn’t quite doing the job. Sometimes the medications can run into resistance by some pesky mutated cells. So doctors may then change tactics with another treatment option.
I can understand your hesitancy after reading the information on the ICLUSIG (Ponatinib) website. Certainly, some of our medications for treatment of blood cancers can be frightening when looking at potential side effects. From my own experience with AML, I can attest to the wide eyes when scanning through the black box warnings. But these meds can work to get us into remission so we can resume our lives. Doctors and patients both have to weigh the benefit/reward aspect of the drugs.
~iclusig.com:
https://www.iclusig.com/hcp/dosing/cml-response-based-dosing
From what I’m understanding, Ponatinib is one of the options for the treatment of CML. But listed in the details from the company, Ponatinib is usually given only in the event that the Chronic phase met with resistance or intolerance to at least two prior kinase inhibitors. Two similar drugs to Scemblix (asciminib) would be Gleevec (imatinib)or Cavhanza (nilotinib.
It’s also used in accelerated phase (AP) or blast phase (BP) CML for whom no other kinase inhibitors are indicated.
Your husband’s doctor may have specific reasons to switch to Ponatinib such as, if there is a new ‘blast’ phase (meaning escalation of cancer cells. Sometime a more aggressive approach is necessary if there hasn’t been positive results with a less intensive agent.
But with your reservations about this drug, you and your husband have every right to talk this over with his doctor to express your concerns. You can discuss the risks vs rewards and also ask if there is another alternative to try first.
Has there been a rapid increase in blast cells? Have you asked the doctor if there are alternatives?