taking new combined drug Mekinist & Tafinlar after taking Zelboraf

Dear Pennie,

I disagree with your sister's doctor telling her how long she has as if he is Merlin or has infused wisdom. I had mets all over also, but a big barnacle of a tumor on my ilium, and lots of them inside my lungs. I am one of the cohorts in the Tafinlar and Melinist trials and took my first pills on December 28, 2010. My tumors melted and have never returned. Your sister needs her auto-immune working well to help the meds. She hit the jackpot with her BRAF positive genome and I think she, and you, should be very hopeful. Stop all the fear, worry, and stress, and concentrate on hope gratitude and vigilance, the rest is just useless baggage. This is the best time to have melanoma since it was first described long ago. 

My cohorts and I are still in the trial, while we test the combo's durability, and from what I see, those who remain are "on the fight" and not on the run from this damnable disease.  We helped bring the drugs to her, and now I think we should also bring the survivor's attitude also. Please tell her, and her doctor, that this is a whole new ball game and the winners seem to be the warriors who keep their spirit intact. When it was hard, like a lung biopsy, or when the meds caused us to shake, sweat, or feel like a cry, I kept thinking about the box they would put us in, the vault of concrete above it, and how they compact the dirt on top of the whole thing, and wonder how I would feel then. All of a sudden a headache and other trifles seemed just fine to me.

Yes it may still kill me, but I think not. If it fails in the future for me, so what? It was a fantastic link to keep me living, almost as I did before, while we wait for a third drug to be developed to help the first two, or switch to another  modality like anti-PD 1 in combo. These trials are in progress now, and her doctor has no idea of how well they might work on your sister, or if she even will need them, as many of us are very happy taking Smith and Wesson pills and living our lives. Fair play and good fortune to her, and, as for her doctor I say, "To the mind of the fool, all things have been revealed."

Dear Pennie,

I disagree with your sister's doctor telling her how long she has as if he is Merlin or has infused wisdom. I had mets all over also, but a big barnacle of a tumor on my ilium, and lots of them inside my lungs. I am one of the cohorts in the Tafinlar and Melinist trials and took my first pills on December 28, 2010. My tumors melted and have never returned. Your sister needs her auto-immune working well to help the meds. She hit the jackpot with her BRAF positive genome and I think she, and you, should be very hopeful. Stop all the fear, worry, and stress, and concentrate on hope gratitude and vigilance, the rest is just useless baggage. This is the best time to have melanoma since it was first described long ago. 

My cohorts and I are still in the trial, while we test the combo's durability, and from what I see, those who remain are "on the fight" and not on the run from this damnable disease.  We helped bring the drugs to her, and now I think we should also bring the survivor's attitude also. Please tell her, and her doctor, that this is a whole new ball game and the winners seem to be the warriors who keep their spirit intact. When it was hard, like a lung biopsy, or when the meds caused us to shake, sweat, or feel like a cry, I kept thinking about the box they would put us in, the vault of concrete above it, and how they compact the dirt on top of the whole thing, and wonder how I would feel then. All of a sudden a headache and other trifles seemed just fine to me.

Yes it may still kill me, but I think not. If it fails in the future for me, so what? It was a fantastic link to keep me living, almost as I did before, while we wait for a third drug to be developed to help the first two, or switch to another  modality like anti-PD 1 in combo. These trials are in progress now, and her doctor has no idea of how well they might work on your sister, or if she even will need them, as many of us are very happy taking Smith and Wesson pills and living our lives. Fair play and good fortune to her, and, as for her doctor I say, "To the mind of the fool, all things have been revealed."

Dear Pennie,

I disagree with your sister's doctor telling her how long she has as if he is Merlin or has infused wisdom. I had mets all over also, but a big barnacle of a tumor on my ilium, and lots of them inside my lungs. I am one of the cohorts in the Tafinlar and Melinist trials and took my first pills on December 28, 2010. My tumors melted and have never returned. Your sister needs her auto-immune working well to help the meds. She hit the jackpot with her BRAF positive genome and I think she, and you, should be very hopeful. Stop all the fear, worry, and stress, and concentrate on hope gratitude and vigilance, the rest is just useless baggage. This is the best time to have melanoma since it was first described long ago. 

My cohorts and I are still in the trial, while we test the combo's durability, and from what I see, those who remain are "on the fight" and not on the run from this damnable disease.  We helped bring the drugs to her, and now I think we should also bring the survivor's attitude also. Please tell her, and her doctor, that this is a whole new ball game and the winners seem to be the warriors who keep their spirit intact. When it was hard, like a lung biopsy, or when the meds caused us to shake, sweat, or feel like a cry, I kept thinking about the box they would put us in, the vault of concrete above it, and how they compact the dirt on top of the whole thing, and wonder how I would feel then. All of a sudden a headache and other trifles seemed just fine to me.

Yes it may still kill me, but I think not. If it fails in the future for me, so what? It was a fantastic link to keep me living, almost as I did before, while we wait for a third drug to be developed to help the first two, or switch to another  modality like anti-PD 1 in combo. These trials are in progress now, and her doctor has no idea of how well they might work on your sister, or if she even will need them, as many of us are very happy taking Smith and Wesson pills and living our lives. Fair play and good fortune to her, and, as for her doctor I say, "To the mind of the fool, all things have been revealed."

Hi Pennie,

I am sorry that your sister (and you) are having to deal with all of this.  I have not taken these particular medications personally, but recently posted several articles related to BRAF inhibitors….what they are, how they work, the new combo's http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

You can check out the link if you like.  But the bit that may be most important to you and your sister is this quote from an article by Flarhety et al….in a study where folks who progressed on a single BRAF inhibitor were then given the combo:

"Additionally, in the Part B expansion cohort of patients with prior disease progression during [single] BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT therapy."

Wishing you both my very best.  Yours, Celeste

Hi Pennie,

I am sorry that your sister (and you) are having to deal with all of this.  I have not taken these particular medications personally, but recently posted several articles related to BRAF inhibitors….what they are, how they work, the new combo's http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

You can check out the link if you like.  But the bit that may be most important to you and your sister is this quote from an article by Flarhety et al….in a study where folks who progressed on a single BRAF inhibitor were then given the combo:

"Additionally, in the Part B expansion cohort of patients with prior disease progression during [single] BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT therapy."

Wishing you both my very best.  Yours, Celeste

Hi Pennie,

I am sorry that your sister (and you) are having to deal with all of this.  I have not taken these particular medications personally, but recently posted several articles related to BRAF inhibitors….what they are, how they work, the new combo's http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

You can check out the link if you like.  But the bit that may be most important to you and your sister is this quote from an article by Flarhety et al….in a study where folks who progressed on a single BRAF inhibitor were then given the combo:

"Additionally, in the Part B expansion cohort of patients with prior disease progression during [single] BRAF inhibitor treatment, an impressive 19% response rate was seen with CombiDT therapy."

Wishing you both my very best.  Yours, Celeste