Like many of you said, my fiance has done a lot better on the new taf/mek drugs. It's been almost a month now and he is entirely off pain medication (he had previously been on a fentanyl patch!!).
Things got scary for a while. We had a palliative nurse visit our home, and we had home oxygen set up, and he'd basically stopped eating and couldn't get out of bed. It was scary. Within 2 weeks of starting taf/mek he was off the home oxygen, and a week after that he was off the painkillers. He's still dealing with a lot of fatigue and weakness after a really hard 3 months (craniotomy, time in ICU, major breathing issues etc.), but he is finally getting back to normal. And we're getting married in 3 weeks!
He hasn't had any scans since his last time in the hospital about 3 weeks ago, which was just intense bad news as the melanoma cancer had grown and spread significantly everywhere and was preventing him from breathing. He is feeling much better now, so we're confident the next scans in June will go well.
But we also know that taf/mek is likely just a temporary measure, especially considering the extent of his disease before starting treatment.
At what point do we bring up with our oncologist that we'd like to try ipi/nivo again? When do we make that switch? He had just one ipi/nivo infusion, but was hospitalized one week later with breathing issues. That's when the docs spotted the lymphangitic carcinomatosis (a type of lung metastasis progression) and decided to switch him to taf/mek — so 10 days after first ipi/nivo infusion, he started taf/mek. To be clear, he wasn't switched off ipi/nivo due to side effects, but rather because the cancer had progressed so quickly that the oncologist wanted him on something faster-acting. (The little I read said that more than 50% of patients with lymphangitic carcinomatosis die within 3 months. It's more common in lung/breast/colon cancer patients than melanoma.)
So what should we do next? Other than get married!! 🙂
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