MC1R

Amy, every situation is different but I can tell you mine and I hope that helps. I had 2 sub centimeter brain tumors that advanced me to stage 4. I immediately started on taf/mek therapy and had srs. Six months later the tumors resolved.
Please find your dad a large melanoma hospital that has plenty of experience with brain mets, targeted therapy and immunotherapy.

Amy, every situation is different but I can tell you mine and I hope that helps. I had 2 sub centimeter brain tumors that advanced me to stage 4. I immediately started on taf/mek therapy and had srs. Six months later the tumors resolved.
Please find your dad a large melanoma hospital that has plenty of experience with brain mets, targeted therapy and immunotherapy.

I am here to answer this YES! I went from stage 3 to stage 4 with 2 brain mets. I immediately started the Dabrafenib/Trametinib combo and did SRS. Seven months later my brain mets had resolved. I stayed on the combo for a full 2 years. This October will be my 3 yr anniversary of being NED. A complete, long term response can happen. (I’m cautiously optimistic about the long term part)
My Oncologist at MD Anderson was on the study for the two new BRAF+ drugs and she was Extremely excited about them. Less adverse effects and no fasting involved are two very big pluses besides the efficacy.
I may be an outlier but I had low tumor burden and normal LDH going for me.

I did a full 2 years on the combo as a stage 4 patient. When I stopped, which was 17 months ago, It took a good 3-4 months for my energy/stamina to pick up. I’m 53 and initially did a year of interferon in 2014. Since I was on something or recovering from something since then, I’m not really sure if I’m at “normal”. But you can tell your friend that it definite does get better!!

I do have a success story with Taf/Mek to share. The short version is that I went from 3b to stage 4 with 2 brain mets. I had gamma knife and started taking Taf/Mek.   Both brain mets resolved in 6 months and I continued on Taf/Mek for a total of 2 years. I had intermittent fevers/chills episodes especially during the first year. My approach was to immediately stop the Tafinlar until the fevers resolved. I continued on the Mek the whole time though.  I was usually back to normal within 3 or 4 days.

Just FYI, a new combination of BRAFi is hopefully going to be FDA approved by June 30th  My doctor told me that this combo has had excellent trial results and a lower side effect profile. 

Good luck to you –

 

I don't know if it is common but that is my story.  Went from 3b in groin to 2 small brain mets detected on an annual MRI about 28 months after CLND.  CTs of body have always been clear. 

I also have BC/BS PPO insurance and am on TAF/MEK .  They do use a mail order pharmacy that will set you up for delivery once all the paperwork is in order. The delivery is overnight because the Mekinist needs to be refrigerated. It will come in a cooler with ice packs. 

If you don't hear from the pharmacy, I would call to make sure they have everything they need. 

Good luck 

I have been on Mek/Taf for a year and I definitely do experience fatigue and tiredness.  My Oncologist started me on Synthroid in October and just upped the dosage this week because my thryroid numbers were low again.  How long have you been on them?

I have been on Mek/Taf for a year and I definitely do experience fatigue and tiredness.  My Oncologist started me on Synthroid in October and just upped the dosage this week because my thryroid numbers were low again.  How long have you been on them?

I did a year interferon in 2014.  My once regular cycle turned erratic and my hormones were all messed up. My doctor said that it can accelerate you to menopause.  Since my completion of interferon, they are just very sporadic. I did have 1 side effect that my doctor had never seen.  My naturally curly hair thinned and went completely straight!  All of it, not just new growth. The curl has come back a bit over the last year but definitely not the same. 

I did a year interferon in 2014.  My once regular cycle turned erratic and my hormones were all messed up. My doctor said that it can accelerate you to menopause.  Since my completion of interferon, they are just very sporadic. I did have 1 side effect that my doctor had never seen.  My naturally curly hair thinned and went completely straight!  All of it, not just new growth. The curl has come back a bit over the last year but definitely not the same. 

I did a year interferon in 2014.  My once regular cycle turned erratic and my hormones were all messed up. My doctor said that it can accelerate you to menopause.  Since my completion of interferon, they are just very sporadic. I did have 1 side effect that my doctor had never seen.  My naturally curly hair thinned and went completely straight!  All of it, not just new growth. The curl has come back a bit over the last year but definitely not the same. 

Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

Love what you do for all of us!  You rock.

 

Damn – that was insightful at the get go!  😉    Yay for you!  Mine started with a "bump" in my femoral cavity.  Turned out to be a 2.5cm lymph node full of disease.  Unknown primary and clueless patient…

3 years later and I am all over the science and biology of it.  At stage 4 now, 2 disappearing brain mets from gamma knife and on Taf/Mek combo for 6 months so far.  Plan to be one of the long terrm combo responders with normal LDH, < 3 disease sites and low tumor burden.  

Love what you do for all of us!  You rock.