Anybody with BRAF fusion? Anybody taking tovorafenib?

Welcome, although I'm sorry your husband and your family are facing this diagnosis.

Acinar cell carcinoma is quite rare compared to pancreatic adenocarcinoma, and the presence of a BRAF fusion may open up treatment options that many pancreatic cancer patients don't have.

I don't have personal experience with tovorafenib, but I would be very interested to hear from anyone who has taken it for a BRAF fusion. Because acinar cell carcinoma is uncommon, it may be worth asking whether your husband's case has been reviewed by a major academic center or a specialist familiar with rare pancreatic tumors and targeted therapies.

The fact that he has only minimal abdominal discomfort is encouraging. Hopefully the targeted treatment options available for BRAF-driven tumors will provide another avenue beyond standard chemotherapy.

Wishing you and your husband the very best. Please keep us updated on what you learn about tovorafenib and how he does with treatment.

@mcharlesfrancis Thank you so much for your note. My husband was diagnosed 15 weeks ago; we are very fortunate to live in Houston and receive treatment at MD Anderson. Yes acinar cell carcinoma is very rare (approx 1% of pancreatic cancers) so not much data available. He has a BRAF fusion and we are trying to identify anyone with that. (As an aside, the data suggest that a specific BRAF mutation occurs in anywhere from 25-50% of acinar cell carcinoma, but he does not have that mutation). His specific BRAF fusion occurs in brain cancers, specifically pediatric glioma. There is an FDA approved therapy for that: tovorafenib. We are trying to identify anyone with pancreatic cancer who has used that drug because we may pursue that. There is also a trial of an improved version of that medication from a different pharma, but we have no control as to if and when we will be admitted to that trial. If we decide to start taking tovorafenib, we cannot be included in that trial (and early results suggest it is a more effective therapy, so we have reason to prefer the trial medication).

So ... we continue with chemo (round 6 was last Friday) and hope for quick admission to the trial ...

Sincere thanks and appreciation for your thoughts and concerns.