› Forums › General Melanoma Community › Combo Side-effects?
- This topic has 33 replies, 8 voices, and was last updated 10 years, 4 months ago by
Aussielyn.
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- December 13, 2013 at 1:16 am
Hi,
according to UPS, my Mentkist will be arriving tomorrow. So far, I've experienced almost no side-effects from the Trafinlar.
What have those who are on the combo experienced? Rash, diarrhea, etc?
Al, how's it going for you? Did Dr P start you on 1.5 mg 2/day before increasing to 2mg twice daily to check your liver function?
I can't believe that I am scared about this, but I am!
thanks for all advice/experience.
Karen
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- December 13, 2013 at 3:38 am
Hi Karen,
My dad has been on the combo for about 6 months. He has found it to be much easier than Zelboraf, which made him very sensitive to the light and generally uncomfortable. His main side effect is low energy. That said, he went on a 4 mile hike the other day and at minimum takes the dog for a daily walk so it hasn't been terribly debilitating fatigue for the most part.
I'm not sure if he did an incremental start but he hasn't had any significant problems with blood work or anything while he has been on it.
Good luck!
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- December 13, 2013 at 3:38 am
Hi Karen,
My dad has been on the combo for about 6 months. He has found it to be much easier than Zelboraf, which made him very sensitive to the light and generally uncomfortable. His main side effect is low energy. That said, he went on a 4 mile hike the other day and at minimum takes the dog for a daily walk so it hasn't been terribly debilitating fatigue for the most part.
I'm not sure if he did an incremental start but he hasn't had any significant problems with blood work or anything while he has been on it.
Good luck!
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- December 13, 2013 at 3:38 am
Hi Karen,
My dad has been on the combo for about 6 months. He has found it to be much easier than Zelboraf, which made him very sensitive to the light and generally uncomfortable. His main side effect is low energy. That said, he went on a 4 mile hike the other day and at minimum takes the dog for a daily walk so it hasn't been terribly debilitating fatigue for the most part.
I'm not sure if he did an incremental start but he hasn't had any significant problems with blood work or anything while he has been on it.
Good luck!
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- December 13, 2013 at 1:37 pm
I just started on the combo a week ago. I'm not sure if side effects start immediately or if it takes some time to manifest, but I have no noticable side effects at all. I started both drugs at full strength (no tapering up or starting one first then adding the other) on the same day. One difference (and I'm a bit curious about it) is that with the MEK inhibitor, I'm on 2 mg once a day and your doctor was talking about 2 mg twice a day (starting with 1.5 mg twice a day). Am I being underdosed? MEK has to be refidgerated, which I find a little tedious for the evenings since I can't just pop them into a bottle in my room temp purse to take with me to a movie or some other evening event, but since I'm only on once a day I just take them in the morning.
I was told that the side effects of the combo are less than with either drug by itself so if you're having side effects from the BRAF, they may actually lessen once you begin the MEK. I was also told I needed a baseline ocular exam by an ophthalmologist because the MEK can cause retinal detachment and some other eye problems, and to make sure I tell my doctor if I develop any kind of cough as the MEK can cause lung inflamation- I'm sure you were told the same stuff. But for me, so far so good as far as side effects go.
Good luck, I hope the combo does well for you.
-Eva
Oh, and on the plus side, the MEK pills are TINY. So much easier than the giant BRAF capsules.
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- December 13, 2013 at 1:37 pm
I just started on the combo a week ago. I'm not sure if side effects start immediately or if it takes some time to manifest, but I have no noticable side effects at all. I started both drugs at full strength (no tapering up or starting one first then adding the other) on the same day. One difference (and I'm a bit curious about it) is that with the MEK inhibitor, I'm on 2 mg once a day and your doctor was talking about 2 mg twice a day (starting with 1.5 mg twice a day). Am I being underdosed? MEK has to be refidgerated, which I find a little tedious for the evenings since I can't just pop them into a bottle in my room temp purse to take with me to a movie or some other evening event, but since I'm only on once a day I just take them in the morning.
I was told that the side effects of the combo are less than with either drug by itself so if you're having side effects from the BRAF, they may actually lessen once you begin the MEK. I was also told I needed a baseline ocular exam by an ophthalmologist because the MEK can cause retinal detachment and some other eye problems, and to make sure I tell my doctor if I develop any kind of cough as the MEK can cause lung inflamation- I'm sure you were told the same stuff. But for me, so far so good as far as side effects go.
Good luck, I hope the combo does well for you.
-Eva
Oh, and on the plus side, the MEK pills are TINY. So much easier than the giant BRAF capsules.
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- December 13, 2013 at 1:37 pm
I just started on the combo a week ago. I'm not sure if side effects start immediately or if it takes some time to manifest, but I have no noticable side effects at all. I started both drugs at full strength (no tapering up or starting one first then adding the other) on the same day. One difference (and I'm a bit curious about it) is that with the MEK inhibitor, I'm on 2 mg once a day and your doctor was talking about 2 mg twice a day (starting with 1.5 mg twice a day). Am I being underdosed? MEK has to be refidgerated, which I find a little tedious for the evenings since I can't just pop them into a bottle in my room temp purse to take with me to a movie or some other evening event, but since I'm only on once a day I just take them in the morning.
I was told that the side effects of the combo are less than with either drug by itself so if you're having side effects from the BRAF, they may actually lessen once you begin the MEK. I was also told I needed a baseline ocular exam by an ophthalmologist because the MEK can cause retinal detachment and some other eye problems, and to make sure I tell my doctor if I develop any kind of cough as the MEK can cause lung inflamation- I'm sure you were told the same stuff. But for me, so far so good as far as side effects go.
Good luck, I hope the combo does well for you.
-Eva
Oh, and on the plus side, the MEK pills are TINY. So much easier than the giant BRAF capsules.
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- December 13, 2013 at 2:37 pm
Karen, you've probably seen my prior posts. I've been on the combo since August. At times (though not since October), I will have some joint pain (hips for me) and pain on the soles on my feet (not the skin). We're talking relatively minor aches and pains. I've probably taken Advil a handful of days. Regarding the schedule, I elected to take the MEK at night and have stuck with that. Regarding Eva's post, 2mg (one pill) once a day is the standard dose. I also wouldn't worry too much about having a MEK pill out of the fridge for a few hours.
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- December 13, 2013 at 2:37 pm
Karen, you've probably seen my prior posts. I've been on the combo since August. At times (though not since October), I will have some joint pain (hips for me) and pain on the soles on my feet (not the skin). We're talking relatively minor aches and pains. I've probably taken Advil a handful of days. Regarding the schedule, I elected to take the MEK at night and have stuck with that. Regarding Eva's post, 2mg (one pill) once a day is the standard dose. I also wouldn't worry too much about having a MEK pill out of the fridge for a few hours.
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- December 13, 2013 at 3:41 pm
Karen,
definitely recheck that dose. I checked the bottle and it was 2 mg once a day. So hoping it works for you!!
amy
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- December 13, 2013 at 3:41 pm
Karen,
definitely recheck that dose. I checked the bottle and it was 2 mg once a day. So hoping it works for you!!
amy
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- December 14, 2013 at 8:18 am
Hi Karen
I added the MEK (Mekinist) to the BRAF (Tafinlar) 4.5 months ago after being on the BRAF alone for 8 months. Adding the MEK improved the side effects of the BRAF alone – skin problems, lower joint pain, However I have had a few episodes of high temperatures/fevers/chills. This is quite common with the combo – most people experience one episode and that's it. Most oncologists will be able to deal with it and move on. Tends to happen after 3-5 weeks on MEK. A small percentage of people have more than one episode – I was put on prednisilone after most recent episode and that was effective. Have tapered off now so hoping to be OK without it as combo is working well still.
John
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- December 14, 2013 at 8:18 am
Hi Karen
I added the MEK (Mekinist) to the BRAF (Tafinlar) 4.5 months ago after being on the BRAF alone for 8 months. Adding the MEK improved the side effects of the BRAF alone – skin problems, lower joint pain, However I have had a few episodes of high temperatures/fevers/chills. This is quite common with the combo – most people experience one episode and that's it. Most oncologists will be able to deal with it and move on. Tends to happen after 3-5 weeks on MEK. A small percentage of people have more than one episode – I was put on prednisilone after most recent episode and that was effective. Have tapered off now so hoping to be OK without it as combo is working well still.
John
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- December 14, 2013 at 8:18 am
Hi Karen
I added the MEK (Mekinist) to the BRAF (Tafinlar) 4.5 months ago after being on the BRAF alone for 8 months. Adding the MEK improved the side effects of the BRAF alone – skin problems, lower joint pain, However I have had a few episodes of high temperatures/fevers/chills. This is quite common with the combo – most people experience one episode and that's it. Most oncologists will be able to deal with it and move on. Tends to happen after 3-5 weeks on MEK. A small percentage of people have more than one episode – I was put on prednisilone after most recent episode and that was effective. Have tapered off now so hoping to be OK without it as combo is working well still.
John
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- December 13, 2013 at 3:41 pm
Karen,
definitely recheck that dose. I checked the bottle and it was 2 mg once a day. So hoping it works for you!!
amy
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- December 13, 2013 at 2:37 pm
Karen, you've probably seen my prior posts. I've been on the combo since August. At times (though not since October), I will have some joint pain (hips for me) and pain on the soles on my feet (not the skin). We're talking relatively minor aches and pains. I've probably taken Advil a handful of days. Regarding the schedule, I elected to take the MEK at night and have stuck with that. Regarding Eva's post, 2mg (one pill) once a day is the standard dose. I also wouldn't worry too much about having a MEK pill out of the fridge for a few hours.
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- December 16, 2013 at 6:13 am
I started Tafinlar on 5 Dec
and Mek on 12 Dec 2mg 1/day evening.
The Mek definitely made me a little dizzy so i think evening works best.
Mostly i am feeling some fatigue.,..headache
I really just started so i am interested in keeping this thread going and see what happens.
Matt
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- December 16, 2013 at 6:13 am
I started Tafinlar on 5 Dec
and Mek on 12 Dec 2mg 1/day evening.
The Mek definitely made me a little dizzy so i think evening works best.
Mostly i am feeling some fatigue.,..headache
I really just started so i am interested in keeping this thread going and see what happens.
Matt
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- December 16, 2013 at 6:13 am
I started Tafinlar on 5 Dec
and Mek on 12 Dec 2mg 1/day evening.
The Mek definitely made me a little dizzy so i think evening works best.
Mostly i am feeling some fatigue.,..headache
I really just started so i am interested in keeping this thread going and see what happens.
Matt
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- December 16, 2013 at 8:55 am
Hi Karen, I have been on the combo since early August. For the first 6 weeks I only had hot, red soles of my feet & red hands & aching legs – usually in the evening & not bad enough to require paracetamol. I was able to exercise & live my life as I had done before treatment. However things became worse around the 6 week mark with temperatures, dehydration & shocking nerve like pain in my legs & feet. At this time I also had mouth ulcers . I had a break from both meds & then resumed on a reduced dose of debrafenib (200 mg a day) along with mek & prednisone. I've had intermittent calf muscle spasms & ankle joint pain.
At the moment I feel really well – am tapering off prednisone 1 mg each week (am now on 4mg). Hopefully all side effects will be gone . My 3 month PET scan showed all tumours disappeared & no new ones. I hope you have minimal side effects & an excellent response. Best of luck – overall, the treatment is very do- able!!
Best wishes, Lyn
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- December 16, 2013 at 8:55 am
Hi Karen, I have been on the combo since early August. For the first 6 weeks I only had hot, red soles of my feet & red hands & aching legs – usually in the evening & not bad enough to require paracetamol. I was able to exercise & live my life as I had done before treatment. However things became worse around the 6 week mark with temperatures, dehydration & shocking nerve like pain in my legs & feet. At this time I also had mouth ulcers . I had a break from both meds & then resumed on a reduced dose of debrafenib (200 mg a day) along with mek & prednisone. I've had intermittent calf muscle spasms & ankle joint pain.
At the moment I feel really well – am tapering off prednisone 1 mg each week (am now on 4mg). Hopefully all side effects will be gone . My 3 month PET scan showed all tumours disappeared & no new ones. I hope you have minimal side effects & an excellent response. Best of luck – overall, the treatment is very do- able!!
Best wishes, Lyn
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- December 16, 2013 at 8:55 am
Hi Karen, I have been on the combo since early August. For the first 6 weeks I only had hot, red soles of my feet & red hands & aching legs – usually in the evening & not bad enough to require paracetamol. I was able to exercise & live my life as I had done before treatment. However things became worse around the 6 week mark with temperatures, dehydration & shocking nerve like pain in my legs & feet. At this time I also had mouth ulcers . I had a break from both meds & then resumed on a reduced dose of debrafenib (200 mg a day) along with mek & prednisone. I've had intermittent calf muscle spasms & ankle joint pain.
At the moment I feel really well – am tapering off prednisone 1 mg each week (am now on 4mg). Hopefully all side effects will be gone . My 3 month PET scan showed all tumours disappeared & no new ones. I hope you have minimal side effects & an excellent response. Best of luck – overall, the treatment is very do- able!!
Best wishes, Lyn
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