› Forums › General Melanoma Community › Tafinlar/Mekinist combo – side affects – question?
- This topic has 24 replies, 6 voices, and was last updated 10 years, 7 months ago by
sgrain.
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- February 25, 2014 at 8:33 pm
Just wondering when the Tafinlar/Mekinist side affects are going to start? I'm like day 6 and nothing which is good. But when I was on Zelboraf I already had fevers, rash from head to neck, etc.
Oh and yeah I'm still walking 🙂 It's difficult now with the tumor pressing on the spinal cord but at least I got to a different local hospital. Same place that did radiation last summer in that spot. The radiation oncologist is trying his best to keep me from being paralyzed. I'm quite happy with him. We'll probably start his radiation plan Friday. Either that or I give this med a chance to work. I dunno for sure yet. But at least I'm still walking. hehe. Had to cancel my trips to MSK and Sarah Cannon but I'll get there eventually. Just gotta get this spot stabalized.
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- February 25, 2014 at 9:17 pm
My side effects didn't kick in till around the 6 week mark. Up till then I only experienced mild sensations of warm/hot hands & feet & mild aching legs – nothing that required painkillers. At 6 weeks I had fever, mouth ulcers , dehydration, & painful legs. Ended up having Dabrafenib dose reduced and a course of prednisone . Have been fine ever since & pretty much live life as I used to. Even rocked along at a bruce Springsteen concert on the weekend ! I am NED now – started my treatment last August. So keep up the hopes & ride it out if you experience some bumps along the way. Some people hardly have any trouble at all.
wishing you all the best & a great response.
lyn
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- February 25, 2014 at 9:17 pm
My side effects didn't kick in till around the 6 week mark. Up till then I only experienced mild sensations of warm/hot hands & feet & mild aching legs – nothing that required painkillers. At 6 weeks I had fever, mouth ulcers , dehydration, & painful legs. Ended up having Dabrafenib dose reduced and a course of prednisone . Have been fine ever since & pretty much live life as I used to. Even rocked along at a bruce Springsteen concert on the weekend ! I am NED now – started my treatment last August. So keep up the hopes & ride it out if you experience some bumps along the way. Some people hardly have any trouble at all.
wishing you all the best & a great response.
lyn
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- February 25, 2014 at 9:17 pm
My side effects didn't kick in till around the 6 week mark. Up till then I only experienced mild sensations of warm/hot hands & feet & mild aching legs – nothing that required painkillers. At 6 weeks I had fever, mouth ulcers , dehydration, & painful legs. Ended up having Dabrafenib dose reduced and a course of prednisone . Have been fine ever since & pretty much live life as I used to. Even rocked along at a bruce Springsteen concert on the weekend ! I am NED now – started my treatment last August. So keep up the hopes & ride it out if you experience some bumps along the way. Some people hardly have any trouble at all.
wishing you all the best & a great response.
lyn
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- February 26, 2014 at 2:05 am
I have never taken these meds so I can't speak from that perspective…but the data demonstrates the supposed beauty of the combo…is that benefits are greater…and side effects are less…with the combo…than with single meds alone. Hoping so much that that will be the case for you!!! C
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- February 26, 2014 at 2:05 am
I have never taken these meds so I can't speak from that perspective…but the data demonstrates the supposed beauty of the combo…is that benefits are greater…and side effects are less…with the combo…than with single meds alone. Hoping so much that that will be the case for you!!! C
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- February 26, 2014 at 2:05 am
I have never taken these meds so I can't speak from that perspective…but the data demonstrates the supposed beauty of the combo…is that benefits are greater…and side effects are less…with the combo…than with single meds alone. Hoping so much that that will be the case for you!!! C
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- February 26, 2014 at 3:23 am
Been on the combo since mid December and have yet to have any side effects (I think). I've had an increase in acne most likely due to extra dry skin that isn't exfoliating well, but that could also just be winter. I have to really scrub my face every day to keep it at bay. Otherwise, no side effects at all. I wouldn't wait too long for them. I have a feeling if you get any you'll know and can talk to your doctor about them. I hope these work for you. I didn't get any noticable response in my subQ's until around 6 or 7 days, then things went down really fast. Hopefully in the next couple of days you start noticing a change as well.
Good luck with the radiation
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- February 26, 2014 at 3:23 am
Been on the combo since mid December and have yet to have any side effects (I think). I've had an increase in acne most likely due to extra dry skin that isn't exfoliating well, but that could also just be winter. I have to really scrub my face every day to keep it at bay. Otherwise, no side effects at all. I wouldn't wait too long for them. I have a feeling if you get any you'll know and can talk to your doctor about them. I hope these work for you. I didn't get any noticable response in my subQ's until around 6 or 7 days, then things went down really fast. Hopefully in the next couple of days you start noticing a change as well.
Good luck with the radiation
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- February 26, 2014 at 3:23 am
Been on the combo since mid December and have yet to have any side effects (I think). I've had an increase in acne most likely due to extra dry skin that isn't exfoliating well, but that could also just be winter. I have to really scrub my face every day to keep it at bay. Otherwise, no side effects at all. I wouldn't wait too long for them. I have a feeling if you get any you'll know and can talk to your doctor about them. I hope these work for you. I didn't get any noticable response in my subQ's until around 6 or 7 days, then things went down really fast. Hopefully in the next couple of days you start noticing a change as well.
Good luck with the radiation
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- March 9, 2014 at 10:11 pm
I started the combo on January 31 (about 5 weeks ago) and didn't have any side effects until the 5th week. I started getting severe chills, rash, and liver levels went way up. Doctor pulled me off meds last Wednesday and will check labs tomorrow. Have felt wonderful the last few days so am sure it's the meds. Not sure what next step is but I hope to get back on it, maybe at a lower dose. Good luck and I hope you continue to have minimum side effects.
sandy
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- March 9, 2014 at 10:11 pm
I started the combo on January 31 (about 5 weeks ago) and didn't have any side effects until the 5th week. I started getting severe chills, rash, and liver levels went way up. Doctor pulled me off meds last Wednesday and will check labs tomorrow. Have felt wonderful the last few days so am sure it's the meds. Not sure what next step is but I hope to get back on it, maybe at a lower dose. Good luck and I hope you continue to have minimum side effects.
sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- April 25, 2014 at 4:45 pm
Hi Sandy,
I have been on the "combo" since January 31 and started experiencing the chills and liver level increases a month later. Like you, my doctor pulled me off the drugs until March 12 when my levels were more normal. He then put me back on dabrafenib only for a couple weeks and then added only 1/2 dose of mekinist. I got the chills again and took another break. I'm now trying 1/2 dose of each drug in the hopes that I can tolerate them at lower doses. I have several lung nodules, all of which have decreased in size and metabolic activity (PET done last week) so I am determined to find a way to stay on this. I guess what I'm saying is talk to your doctor about trying different doses. It really seems to be working for me. Good luck!
Sandy
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- March 9, 2014 at 10:11 pm
I started the combo on January 31 (about 5 weeks ago) and didn't have any side effects until the 5th week. I started getting severe chills, rash, and liver levels went way up. Doctor pulled me off meds last Wednesday and will check labs tomorrow. Have felt wonderful the last few days so am sure it's the meds. Not sure what next step is but I hope to get back on it, maybe at a lower dose. Good luck and I hope you continue to have minimum side effects.
sandy
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- March 10, 2014 at 1:07 am
The best case scenario is that you might have no side effects at all or side effects that are pretty mild. The combo is much less harsh in that regard than the Zelboraf was, at least for me. I have some increased fatigue, which I also had with the Zelboraf, and increased digestive sensitivity, particularly to any foods that are spicy.
I was on the vemurafenib for a little over a year, NED, before developing brain mets. After undergoing WBR, I switched to the dabrafenib in December, with the addition of the tramatenib at the end of January, soon after it was FDA approved. So I've been on the combo for about six weeks after about six weeks on dabrafenib alone.
II had a bunch of side effects with the Zelboraf, including bouts of iritis / uveitis in my left eye, random joint and foot pains, alopecia on most of my body (and my eyebrows), rash, visible changes in my skin, etc. But now, after three months off of it, many of the effects from the Zelboraf seem to be reversing themselves. The hair on my arms, chest, and eyebrows has started to grow back, and so far I've not had any of the random aches or joint pains that I had with the Zelboraf.
I wish you the best of luck and hope you can get that spot stabilized.
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- March 10, 2014 at 1:07 am
The best case scenario is that you might have no side effects at all or side effects that are pretty mild. The combo is much less harsh in that regard than the Zelboraf was, at least for me. I have some increased fatigue, which I also had with the Zelboraf, and increased digestive sensitivity, particularly to any foods that are spicy.
I was on the vemurafenib for a little over a year, NED, before developing brain mets. After undergoing WBR, I switched to the dabrafenib in December, with the addition of the tramatenib at the end of January, soon after it was FDA approved. So I've been on the combo for about six weeks after about six weeks on dabrafenib alone.
II had a bunch of side effects with the Zelboraf, including bouts of iritis / uveitis in my left eye, random joint and foot pains, alopecia on most of my body (and my eyebrows), rash, visible changes in my skin, etc. But now, after three months off of it, many of the effects from the Zelboraf seem to be reversing themselves. The hair on my arms, chest, and eyebrows has started to grow back, and so far I've not had any of the random aches or joint pains that I had with the Zelboraf.
I wish you the best of luck and hope you can get that spot stabilized.
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- March 10, 2014 at 1:07 am
The best case scenario is that you might have no side effects at all or side effects that are pretty mild. The combo is much less harsh in that regard than the Zelboraf was, at least for me. I have some increased fatigue, which I also had with the Zelboraf, and increased digestive sensitivity, particularly to any foods that are spicy.
I was on the vemurafenib for a little over a year, NED, before developing brain mets. After undergoing WBR, I switched to the dabrafenib in December, with the addition of the tramatenib at the end of January, soon after it was FDA approved. So I've been on the combo for about six weeks after about six weeks on dabrafenib alone.
II had a bunch of side effects with the Zelboraf, including bouts of iritis / uveitis in my left eye, random joint and foot pains, alopecia on most of my body (and my eyebrows), rash, visible changes in my skin, etc. But now, after three months off of it, many of the effects from the Zelboraf seem to be reversing themselves. The hair on my arms, chest, and eyebrows has started to grow back, and so far I've not had any of the random aches or joint pains that I had with the Zelboraf.
I wish you the best of luck and hope you can get that spot stabilized.
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