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June 28, 2013 at 12:16 am #21407crburton28Participant
Has anyone’s doctor tried this combo yet?June 28, 2013 at 8:08 pm #61537Catherine PooleKeymaster This probably won’t be allowed because of no trial experience combining these two. Trametinib is also called mekinist and here is the info on it: http://www.cancer.gov/cancertopics/druginfo/fda-trametinib
We’ll see if that loosens up, two approved drugs but zelboraf is a different braf agent than the GSK one known for this combo.June 28, 2013 at 10:11 pm #61538debbie449Participant
My husband began Tafinar 9 days ago. We picked up Mekinist from the pharmacy today. Our local oncologist was hesitant to prescribe together. We were able to persuade him with the report below:
In my husband’s case, we are at the end of our treatment options. He is not healthy enough to participate in a trial for PD1 at this time. Our hope is to buy enough time to pursue PD1.
We are seeing an improvement on the Tafinlar. He had stopped talking and was sleeping most of the time. He is alert and engaged again.
Will keep you posted.June 28, 2013 at 11:44 pm #61539Catherine PooleKeymaster
That is wonderful news. I hope he continues to do well!July 1, 2013 at 1:02 am #61540NYKarenParticipant Debbie,
That’s great news. Did your insurance company give you a hard time about filling both drugs? Did your husband need pre- approval for either/both of them? When I was on Zelboraf, I could only get it by mail, through Oxford’s specialty pharmacy.
KarenJuly 1, 2013 at 1:00 pm #61541Sandalwood36Participant
Sooo happy for you Debbie! Am praying that improvement continues. Stay strong!July 2, 2013 at 10:24 am #61542debbie449Participant We were told the insurance was not going to pay for the MEK because it is not recommended for patients who have failed prior BRAF therapy. We were all pleasantly surprised when insurance paid for both meds, no problem. We had a $60 copay for each. If Insurance had not paid, we planned on paying cash for a limited supply of the MEK.
Sadly, Frank is not having the response we had hoped for. He is not able to swallowed the Tafinlar capsules very easily. Although, he may be having a very moderate response, his overall pain level has steadily increased. We transitioned him to hospice yesterday. I feel like this is the right choice for him and us.
I am happy we did exhaust all of his FDA approved options along with one clinical trial. I believe we did all we could and more. I am heart broken about the effect of this disease on our family and others. The stories (your stories)have helped me to not feel alone.July 2, 2013 at 11:35 am #61543NYKarenParticipant
Debbie, I am sorry to hear your news. I know what you mean about trying all available treatments.
You and Frank are in my thoughts.
KarenJuly 3, 2013 at 3:52 am #61544Sandalwood36Participant
So sorry to hear that Frank is continuing to decline. You have undoubtedly made the right choice by bringing in hospice. They are angels in disguise and will be a great help. I wish that we had gotten them involved sooner. Try to rest and stay strong. Thoughts and prayers are with you.
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