› Forums › General Melanoma Community › Taf/Mek in brain – works for me! S
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DZnDef.
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- June 23, 2018 at 11:24 pm
Late February, after having stopped Taf/Mek for several weeks to see if Keytruda had finally kicked in, I had a 2.7cm tumor pop up in the brain along with five or six sub-centimeter tumors. I immediately stopped Keytruda and re-started Taf/Mek. A series of delays resulted in my having brain surgery April sixteenth. The preop scan indicated the large tumor was 2.3cm and did not mention any other tumors (it was not comparative and was performed at a different facility than the February 27th scan.) post op scan mentioned no tumors. I asked my neurosurgeon if I would be scheduled for gamma knife (standard protocol with him for surgical site "clean up"). He said he wanted to wait for one more set of scans in two months to decide. I felt I was being turned into a test case but I was not concerned as I was back on my wonder drugs. Even if my neurosurgeon did not believe Taf/Mek could work in the brain, I did so I wasn't worried about putting off gamma knife. I was hoping it might even not be necessary. I had a fresh brain scan at a different facility but one I've used before this past Monday the 18th and gave them a CD copy of my February 27th scan for comparison. Of course my neurosurgeon was on vacation all week but I had requested a copy be mailed to me. I received it yesterday and the report noted no evidence of disease. They listed every tumor from the February report as resolved (except for one resected). So my brain is NED. I'll find out about the rest of me in a couple of weeks. So for those folks that have the BRAF mutation that are responders to Taf/Mek, my experience is that it works in the brain too.
Cheers!
Maggie
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- June 24, 2018 at 1:42 am
NED Brain is awesome!!! So glad to hear this news May the rest of your body follow!
One legged happy dancing here in SoCal!
Peace!
Julie
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- June 27, 2018 at 6:50 am
Thanks Julie! Did they get that sucker out? I am glad that Taf/Mek is working for me still and I'm happy to have it dissolve the tumors in my brain but I know I need something more to really be free of this maddening disease. I truly believe there is something out there that will finish the job for me, just not sure what it is yet. Very happy with Taf/Mek in the meantime. The combo has worked for me for over a year and a half so far, well beyond the average so I am quite lucky. I am a rather lazy person. Maybe my cancer is too lazy to mutate again! Thanks for the one-legged happy dance.
Cheers!
Maggie
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- June 24, 2018 at 4:33 am
That is great news Maggie!!
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- June 24, 2018 at 5:46 pm
Congrats Maggie! If you don't mind asking, where did you have your scans done?
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- June 28, 2018 at 1:44 am
Also, Anon, which scans are you referring to? The February 27th scans that found the scary stuff? Or the preop and postop scans which were not comparative? Or the June 18the scans that showed everything resolved? Three different Imaging locations.
Cheers!
Maggie
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- June 26, 2018 at 3:00 pm
That is great news Maggie!! Thank you for letting us know. It's exactly what I'm watching for now – results from anyone who's had recurrence!! I'm "all digits crossed" for the rest of you being NED too!!! Best thoughts and wishes always!
Barb
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