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Been on the Taf/Mek combo after an incomplete excision of a melanoma tumor in parotid gland. Remaining tumor has disappeared and I’ve been on this oral chemo combo for over three years. Anyone else a “longterm user” of this combo? When I started on this drug (having “failed” Keytruda and vemurafanib) my Dr was vague about the length of time I’d be using it as my prognosis wasn’t so great. Now with nearly three years of clear scans isn’t it time to stop? Dr wants me to stick with it for another year, worried that my mutation will roar back into action if I stop. Just wondering if there are any other longterm users and how they decide when to say “uncle.”
3 years is great! Definitely much longer than the average person. I believe the majority will only see about 10-12 months on average before progression starts again. I’m currently on Taf/Mek just over a year now and last scan looked like I was seeing new sites but have to wait for next scan to confirm (small lung nodules popped up). If you are tolerating it I don’t see why taking it for another year would be bad other than financial burden.
Knowing when to stop therapy can be such a hard question! I don’t have an easy answer for you. I do, however, know through this forum a real trooper. Dick K! At least that was how he was known before the site became overly sensitive. Now, he is Richard_k. I believe he was on targeted therapy for 9 years before stopping. Here is one of his posts: https://forum.melanoma.org/forums/topic/another-round-of-good-news/ Perhaps you can peruse his posts or reach out to him to see what went into his decisions regarding stopping therapy in 2019.
Norvitis was unbelievably helpful with co-pay assistance although I maxed out and now I’m on the hook each year until I meet my deductible responsibilities. So (fortunately) thus far the $ part has been manageable and insurance hasn’t tried to impose a limit even though the drug company itself suggests no more than one year. Thank you so much for responding.
Thank you Celeste-while I don’t post very often I have always valued your sound research and heartfelt replies. I am so lucky that this combo has worked for me (particularly given my very grim options and prognosis four years ago!) I know that melanoma will never truly be in my “rearview mirror” but stopping treatment would give me some peace of mind because of the lack of knowledge when it comes to longterm use and the effects on other organs…I’ll look into Richard_k
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