Tafinlar, Mekinist and Vectibix

[Fluff Bottom]

I will be starting on these soon because Folfiri + Avastin stopped working after only a few months. Scan showed growth in existing mets and new ones since March. Anyone else currently doing the triplet Tafinlar, Mekinist, Vectibix?

[Rock_Robster]

Hi Fluff Bottom,

I believe Taflinar and Mekinist are targeted therapies for a BRAF mutation - do you know if your genetic testing was positive for BRAF? I couldn’t see this in your signature but would be relevant for treatment protocols.

Thanks
Rob

[Fluff Bottom]

Hi Rob, I have the BRAF V600e mutation. I have to redo my signature, I ran out of room lol.

[hopefulandstrong]

I'm also doing triplet therapy -- but it seems a slightly different one from yours. Erbitux instead of Vectibix.

I did the first Erbitux infusion on Wednesday, and am just now starting to see signs of the rash -- small pimples on the arms and redness on the face. I'm taking antibiotics to manage the rash. Still waiting for the pills to arrive, so I don't yet know how the cocktail works on me. Eager to hear from others on this therapy as well. I'll report back to this topic as things unfold.

[tigran.nl]

Hi, my father's cancer has braf v600e mutation too and we are looking Beacon trial for him. I can see on your signature that you are going through that kind of triplet therapy. Can you share with me some details about Beacon trial? (Side effects, how can enroll...). Thank you.

I'm also doing triplet therapy -- but it seems a slightly different one from yours. Erbitux instead of Vectibix.

I did the first Erbitux infusion on Wednesday, and am just now starting to see signs of the rash -- small pimples on the arms and redness on the face. I'm taking antibiotics to manage the rash. Still waiting for the pills to arrive, so I don't yet know how the cocktail works on me. Eager to hear from others on this therapy as well. I'll report back to this topic as things unfold.

[Fluff Bottom]

Hopeful, I’m not sure why a doctor would choose Erbitux or Vectibix. I have my first infusion this coming Thursday. I got the pills this past week and was told to go ahead and start taking them. So far no horrible side effects, just a headache, nausea and a little fatigue. Not looking forward to dealing with the rash. I’m running out of options so I’ll deal with it.

I hope your treatment goes well. Please keep us updated.

[ginabeewell]

Hopeful, I’m not sure why a doctor would choose Erbitux or Vectibix.

My doctor told me they were clinically the same, but Vectibix could be given every two weeks versus weekly, so he opted for that.

I can’t speak to triplet therapy, but I can tell you a lot about that rash. Best advice I would give is to treat it proactively, before it makes a full appearance, with Doxycycline and steroid cream. It’s really difficult to get rid of it once it comes, because the bumps get hard white heads that don’t go away like pimples do.

I’ve also spent a LOT of money on high quality serums and moisturizers! I’ve had the best experience with La Mer serum and True Botanicals serum and oils. (The latter is less expensive and worked as well or better in all areas except the delicate eye area.)

[hopefulandstrong]

Started the triplet therapy this week. Erbitux on Wednesday, and the pills arrived yesterday. I take a total of 10 a day. Three doses as of this afternoon, and, so far, no really bad side-effects. Far easier than the crazy tingling and swords in the throat on Folfox. I think my hair may come back too.

The one side effect that is weird is a kind of belly pain that feels a little like cramping. It comes and goes and definitely worse when lying down. I'd say it's about 3 on the pain scale. Nothing at all like the pain of obstruction -- which how I came to learn I had this cancer -- but enough to make we wonder what is going on.

So far I am noticing sun-sensitivity that has me lathering up with sunscreen and staying out of the sun during peak UV times. I also slather First Aide Beautiy Ultra Repair Cream on my hands and feet in the AM and PM. Like Gina, I spend a lot of time on my skin -- and think it's worth the investment for various serums and stuff. Drunk Elephant products are clean (and expensive), but I find the Protini cream is really helpful. I'm taking the antibiotics and I have the steroids on-deck, but the rash has not quite appeared. My one nurse said it would come probably in weeks 2 o 3. Wonder what others have experienced.

Just one more note about the triplet therapy: for those of us with BRAF mutation, I find this is pretty exciting. The research is fascinating -- the difference between doublet and triplet is significant, and the cocktail really is a breakthrough. Of course, no guarantees. But I feel more hopeful now than before.

[hopefulandstrong]

Regarding the Beacon trial -- I believe it's ongoing, but you don't need to be in it to get the meds. They were recently approved by the FDA as a "breakthrough" treatment. If you have the BRAF mutation, and if your first line treatment either failed or stopped working, insurance should cover...

[Fluff Bottom]

I’m not involved in a trial either. Just got lucky with the timing and insurance approved it.

[tigran.nl]

Thank you so much for useful information and for your time. Please if you can keep us updated about the triplet therapy. God bless you.

Started the triplet therapy this week. Erbitux on Wednesday, and the pills arrived yesterday. I take a total of 10 a day. Three doses as of this afternoon, and, so far, no really bad side-effects. Far easier than the crazy tingling and swords in the throat on Folfox. I think my hair may come back too.

The one side effect that is weird is a kind of belly pain that feels a little like cramping. It comes and goes and definitely worse when lying down. I'd say it's about 3 on the pain scale. Nothing at all like the pain of obstruction -- which how I came to learn I had this cancer -- but enough to make we wonder what is going on.

So far I am noticing sun-sensitivity that has me lathering up with sunscreen and staying out of the sun during peak UV times. I also slather First Aide Beautiy Ultra Repair Cream on my hands and feet in the AM and PM. Like Gina, I spend a lot of time on my skin -- and think it's worth the investment for various serums and stuff. Drunk Elephant products are clean (and expensive), but I find the Protini cream is really helpful. I'm taking the antibiotics and I have the steroids on-deck, but the rash has not quite appeared. My one nurse said it would come probably in weeks 2 o 3. Wonder what others have experienced.

Just one more note about the triplet therapy: for those of us with BRAF mutation, I find this is pretty exciting. The research is fascinating -- the difference between doublet and triplet is significant, and the cocktail really is a breakthrough. Of course, no guarantees. But I feel more hopeful now than before.

[hopefulandstrong]

Here is an update on my triplet therapy. After nearly a month -- 4 doses of Erbitux and 3 full weeks of Braftovi and Mektovi -- my CEA dropped from 200 to 28. I'm thrilled. I also seem to be leveling off the side effects, which are mainly nausea-- the need to vomit unexpected. I was controlling this with Compozine, but have not needed it for the last several days. The rash is also controlled with the monocline. If this trend continues, I could see myself tolerating this longterm.

Hope yours is going well too.

Best,