Side effects from BRAF positive targeted therapy drugs

Posted by patriceheller @patriceheller, Apr 11 9:47am

My husband, 78 y/o is a survivor of bladder cancer; thyroid cancer and lung cancer, now recurrent post surgical removal of left upper lobe of lung, chemo then concurrent chemo/radiation followed by immunotherapy (durvalumab, Imfinzi). Now, after a CT of lung , PET scan , both highly suspicious of a recurrence, a robotically assisted bronchoscopy w biopsies was performed that did not produce malignant tissue, the oncologist is proposing targeted therapy with the drugs Taflinar (dabrafenib) and Mektovi. These are intended to slow the progression of disease in NSCLC. My concern is the considerable possibility of severe side effects. He had to discontinue immunotherapy due to fairly high grade pneumonitis (treated w high dose steroids).
I would like to hear the experience of anyone who has undergone this particular targeted therapy and any side effects experienced. We wonder if the possibility of slowing the progression is worth the real possibility of severe side effects. Thank you for any advice and sharing of experience.

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@patriceheller, These decisions are never easy. The meds can be powerful to heal but can be harsh to other parts of our bodies too. He's experienced a scary side effect in pneumonitis, so you've seen this firsthand.
Each of us are different and come into this treatment process with different bodies that can process meds differently too. I have lung cancer, with an ALK gene mutation, and have been taking a targeted therapy for the past six years. It's not always easy, but I've been able to tolerate the meds, with non-critical side effects.

Here's a link to an older (2023) post about this combination of therapies:
https://connect.mayoclinic.org/discussion/anyone-else-taking-mekinist-and-dabrafenib-for-oral-chemo/
@lilyann, did you end up having this combination of therapies?
https://connect.mayoclinic.org/comment/1148457/
@tomschwerdt, @bellavoce, @kimbarr, How are you doing? Are you on this combination, or one of these medications?

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Profile picture for Lisa, Volunteer Mentor @lls8000

@patriceheller, These decisions are never easy. The meds can be powerful to heal but can be harsh to other parts of our bodies too. He's experienced a scary side effect in pneumonitis, so you've seen this firsthand.
Each of us are different and come into this treatment process with different bodies that can process meds differently too. I have lung cancer, with an ALK gene mutation, and have been taking a targeted therapy for the past six years. It's not always easy, but I've been able to tolerate the meds, with non-critical side effects.

Here's a link to an older (2023) post about this combination of therapies:
https://connect.mayoclinic.org/discussion/anyone-else-taking-mekinist-and-dabrafenib-for-oral-chemo/
@lilyann, did you end up having this combination of therapies?
https://connect.mayoclinic.org/comment/1148457/
@tomschwerdt, @bellavoce, @kimbarr, How are you doing? Are you on this combination, or one of these medications?

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@lls8000 I was on Taflinar and Mekinist for approximately four months to treat the BRAF mutation in my Ameloblastoma tumor. These inhibitors worked well to stop the growth of the tumor. Common side effects were manageable with dose reductions. However, I was forced to stop drug therapy when I developed rare, non-dose-dependent side effects that threatened my quality of life. In my situation, the combined side effects of Taflinar + Mekinist were worse than the disease.

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Thank you for sharing your experience. It is a difficult decision .

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Profile picture for bellavoce @bellavoce

@lls8000 I was on Taflinar and Mekinist for approximately four months to treat the BRAF mutation in my Ameloblastoma tumor. These inhibitors worked well to stop the growth of the tumor. Common side effects were manageable with dose reductions. However, I was forced to stop drug therapy when I developed rare, non-dose-dependent side effects that threatened my quality of life. In my situation, the combined side effects of Taflinar + Mekinist were worse than the disease.

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@bellavoce , thanks for sharing your experience. Were you able to move to a different treatment?

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Profile picture for Lisa, Volunteer Mentor @lls8000

@bellavoce , thanks for sharing your experience. Were you able to move to a different treatment?

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@lls8000 Unfortunately, no. There are six drugs on the market that are BRAF and MEK inhibitors. They all cause the rare side effects I experienced so I was not able to switch to a different drug therapy.

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