Shelkay1

Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone!
I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!

Great news, Shelkay!

Shelkay,
Just living the best life you can is the right road to be on. 
Stay the course.
Tom

Wow that's FANTASTIC!!! Woo!

Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone!
I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!

Shelkay,
Such fantastic news!! I'm really happy for you!!
 
Best,

Ro

Wow! That’s wonderful news!  Those inhibitors are really miraculous little suckers! 

Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone!
I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!

I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences. 
Thanks! 
 

I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences. 
Thanks! 
 

Thanks Michelle, I spent the last few days watching The Bonnie J. Addario Lung Cancer Living Room videos & reading in her book. I had never really looked at her stuff before, a lot of good information, but not much at all on the BRAF V600E mutation (pronounced B -Raff). My PET scan is tomorrow, next week is a check by my pulmonologist & an echocardiogram & on 4/9 is back to the oncologist. I also had to see my eye doctor before I'd be able to start the treatment they are recommending. I'm still waiting to get an appointment for my 2nd opinion at Penn Medicine in Philadelphia.
Thank you too Colleen, I was happy to hear you had gotten good news.
 

Thanks Michelle, I spent the last few days watching The Bonnie J. Addario Lung Cancer Living Room videos & reading in her book. I had never really looked at her stuff before, a lot of good information, but not much at all on the BRAF V600E mutation (pronounced B -Raff). My PET scan is tomorrow, next week is a check by my pulmonologist & an echocardiogram & on 4/9 is back to the oncologist. I also had to see my eye doctor before I'd be able to start the treatment they are recommending. I'm still waiting to get an appointment for my 2nd opinion at Penn Medicine in Philadelphia.
Thank you too Colleen, I was happy to hear you had gotten good news.
 

I still haven't started mine. 😕 Gotta wait for the CT scan this week. Bob you didn't have side effects for chemo?! Wish I could say the same!
Why do they always gotta have the icky side effects? Nausea, vomiting, neuropathy, hair loss, fatigue, etc. I wanna discover one that has some cool side effects. WARNING: May cause the sudden ability to fly, enhanced telepathy, increased speed and agility, night vision, extreme intelligence, etc. LOL
I think I watch too many X-Men movies..😄