› Forums › General Melanoma Community › trafinlar+ mekinist
- This topic has 18 replies, 5 voices, and was last updated 9 years, 2 months ago by Issy.
- Post
-
- March 20, 2015 at 2:36 am
Looks very probable that I will be put on this combination soon. I am stage IV…braf+
Growths in my lungs and liver are stable since Yervoy infusions last July, but there is a node/growth in the chest wall that is increasing in size…..most likely melanoma, as this was the original site. I go back for more scans in May, and if there is a significant increase, I will start trafinlar + mekinist. Can anyone tell me about your experience with these drugs? The literature they gave me at the office was kind of scary…..Also, there is no mention of how long patients usually stay on these drugs. Is there a scheduled plan? Thanks. I love this forum! Nell
- Replies
-
-
- March 20, 2015 at 11:16 am
Nell, this is my personal experience on these drugs. I started taking them in August 2014 and few weeks after that I had fever and chills lasting for about 2 days. My hair was also shedding more than usual. In December I started getting painful mouth sores all over my mouth. The doctor suggested to stop for a few days and restart alternating days. The mouth sores got worse and then started going down my throat. At that point I stopped and now I'm doing Keytruda. I've done 2 infusions and so far no side effects yet, just fatigue. Hope you'll do better.
-
- March 20, 2015 at 11:16 am
Nell, this is my personal experience on these drugs. I started taking them in August 2014 and few weeks after that I had fever and chills lasting for about 2 days. My hair was also shedding more than usual. In December I started getting painful mouth sores all over my mouth. The doctor suggested to stop for a few days and restart alternating days. The mouth sores got worse and then started going down my throat. At that point I stopped and now I'm doing Keytruda. I've done 2 infusions and so far no side effects yet, just fatigue. Hope you'll do better.
-
- March 20, 2015 at 11:16 am
Nell, this is my personal experience on these drugs. I started taking them in August 2014 and few weeks after that I had fever and chills lasting for about 2 days. My hair was also shedding more than usual. In December I started getting painful mouth sores all over my mouth. The doctor suggested to stop for a few days and restart alternating days. The mouth sores got worse and then started going down my throat. At that point I stopped and now I'm doing Keytruda. I've done 2 infusions and so far no side effects yet, just fatigue. Hope you'll do better.
-
- March 20, 2015 at 3:30 pm
I know the fda says you have to do braf before pd1 if you are braf positive. But I've also read others being braf positive were somehow able to skip braf and go from Yervoy to pd1. Typically it is thought best to do braf when you have a heavy tumor load or need a quick response. There is talk that possibly later this year the fda will change it so you can get pd1 without braf but that is just talk.
As far as the tafinlar mekinist I was on them 8 weeks plus another 3 weeks waiting to start keytruda. They were way better than the zelboraf pills as far as side affects for me. I usually had a fever of about 103 every day but I didn't really feel it. The sun sensitivity was nothing compared to the zelboraf pills. I had a minor rash again nothing compared to the full body rash on zelboraf. Week 8 I had 3 really rough days of massive shakes and chills and fever and some throwing up. They quickly did a pet scan which showed most tumors stayed the same but a couple continued to grow like crazy and a couple new ones showed up. When I was on zelboraf everything continued to grow but no new stuff showed up.
If I were you I would do whatever you need to to get on one of the pd1s without doing braf. Although braf has been great for lots of people but to do them for one possible small tumor does not make sound medical sense to me but you have to do what your gut tells you. There's also some data that suggests doing braf meds make you less likely to respond to yervoy or pd1. I've had 15 doses of keytruda and side affects of first two doses were some fevers, grogginess. After that very minor fevers occasionally and rarely more than 101. The past 3 doses have had no side affects. First scan had 19 of 30 tumors shrinking. 2nd scan said some tumors had mild growth. In about 5 weeks I get my 3rd scan and am really hoping for a miracle.
Since you had such good success with yervoy and it's been a good 8 months already I've heard of people doing another round of it. Or maybe a maintenance dose if not the full 4 doses.
Well that gives you something to think about. Hope it helps.
Artie
-
- March 20, 2015 at 3:30 pm
I know the fda says you have to do braf before pd1 if you are braf positive. But I've also read others being braf positive were somehow able to skip braf and go from Yervoy to pd1. Typically it is thought best to do braf when you have a heavy tumor load or need a quick response. There is talk that possibly later this year the fda will change it so you can get pd1 without braf but that is just talk.
As far as the tafinlar mekinist I was on them 8 weeks plus another 3 weeks waiting to start keytruda. They were way better than the zelboraf pills as far as side affects for me. I usually had a fever of about 103 every day but I didn't really feel it. The sun sensitivity was nothing compared to the zelboraf pills. I had a minor rash again nothing compared to the full body rash on zelboraf. Week 8 I had 3 really rough days of massive shakes and chills and fever and some throwing up. They quickly did a pet scan which showed most tumors stayed the same but a couple continued to grow like crazy and a couple new ones showed up. When I was on zelboraf everything continued to grow but no new stuff showed up.
If I were you I would do whatever you need to to get on one of the pd1s without doing braf. Although braf has been great for lots of people but to do them for one possible small tumor does not make sound medical sense to me but you have to do what your gut tells you. There's also some data that suggests doing braf meds make you less likely to respond to yervoy or pd1. I've had 15 doses of keytruda and side affects of first two doses were some fevers, grogginess. After that very minor fevers occasionally and rarely more than 101. The past 3 doses have had no side affects. First scan had 19 of 30 tumors shrinking. 2nd scan said some tumors had mild growth. In about 5 weeks I get my 3rd scan and am really hoping for a miracle.
Since you had such good success with yervoy and it's been a good 8 months already I've heard of people doing another round of it. Or maybe a maintenance dose if not the full 4 doses.
Well that gives you something to think about. Hope it helps.
Artie
-
- March 20, 2015 at 3:30 pm
I know the fda says you have to do braf before pd1 if you are braf positive. But I've also read others being braf positive were somehow able to skip braf and go from Yervoy to pd1. Typically it is thought best to do braf when you have a heavy tumor load or need a quick response. There is talk that possibly later this year the fda will change it so you can get pd1 without braf but that is just talk.
As far as the tafinlar mekinist I was on them 8 weeks plus another 3 weeks waiting to start keytruda. They were way better than the zelboraf pills as far as side affects for me. I usually had a fever of about 103 every day but I didn't really feel it. The sun sensitivity was nothing compared to the zelboraf pills. I had a minor rash again nothing compared to the full body rash on zelboraf. Week 8 I had 3 really rough days of massive shakes and chills and fever and some throwing up. They quickly did a pet scan which showed most tumors stayed the same but a couple continued to grow like crazy and a couple new ones showed up. When I was on zelboraf everything continued to grow but no new stuff showed up.
If I were you I would do whatever you need to to get on one of the pd1s without doing braf. Although braf has been great for lots of people but to do them for one possible small tumor does not make sound medical sense to me but you have to do what your gut tells you. There's also some data that suggests doing braf meds make you less likely to respond to yervoy or pd1. I've had 15 doses of keytruda and side affects of first two doses were some fevers, grogginess. After that very minor fevers occasionally and rarely more than 101. The past 3 doses have had no side affects. First scan had 19 of 30 tumors shrinking. 2nd scan said some tumors had mild growth. In about 5 weeks I get my 3rd scan and am really hoping for a miracle.
Since you had such good success with yervoy and it's been a good 8 months already I've heard of people doing another round of it. Or maybe a maintenance dose if not the full 4 doses.
Well that gives you something to think about. Hope it helps.
Artie
-
- March 20, 2015 at 9:13 pm
I agree with Artie's sentiments, but if you move to BRAF-MEK, everyone is different (like with immunotherapy drugs). For me, BRAF-MEK was like taking vitamins. Very few side effects and all manageable. They also improved over time, eg, minor joint pain.
-
- March 20, 2015 at 9:13 pm
I agree with Artie's sentiments, but if you move to BRAF-MEK, everyone is different (like with immunotherapy drugs). For me, BRAF-MEK was like taking vitamins. Very few side effects and all manageable. They also improved over time, eg, minor joint pain.
-
- March 20, 2015 at 9:13 pm
I agree with Artie's sentiments, but if you move to BRAF-MEK, everyone is different (like with immunotherapy drugs). For me, BRAF-MEK was like taking vitamins. Very few side effects and all manageable. They also improved over time, eg, minor joint pain.
-
- March 21, 2015 at 2:16 am
Thank you for the info. I was not given the choice to get right on ketruda, but I would sure opt for that! Artie, the thought of a maintenance dosage of yervoy is interesting…..I had to get off yervoy after 3 infusions because of colitis, but maybe I could tolerate another dose now..I appreciate you all taking the time to answer. Artie, I hope you are doing better!
Can you take the trafinlar+mekinist combination again later if needed? If I take it now, does that eliminate the option to use it later? Thanks, Nell
-
- March 21, 2015 at 2:16 am
Thank you for the info. I was not given the choice to get right on ketruda, but I would sure opt for that! Artie, the thought of a maintenance dosage of yervoy is interesting…..I had to get off yervoy after 3 infusions because of colitis, but maybe I could tolerate another dose now..I appreciate you all taking the time to answer. Artie, I hope you are doing better!
Can you take the trafinlar+mekinist combination again later if needed? If I take it now, does that eliminate the option to use it later? Thanks, Nell
-
- March 21, 2015 at 2:16 am
Thank you for the info. I was not given the choice to get right on ketruda, but I would sure opt for that! Artie, the thought of a maintenance dosage of yervoy is interesting…..I had to get off yervoy after 3 infusions because of colitis, but maybe I could tolerate another dose now..I appreciate you all taking the time to answer. Artie, I hope you are doing better!
Can you take the trafinlar+mekinist combination again later if needed? If I take it now, does that eliminate the option to use it later? Thanks, Nell
-
- March 21, 2015 at 4:03 am
If you take it now and they see no shrinkage then most likely you would be the small group of braf positive like me that do not respond to braf. Thus you probably would not want to take it in the future, if you are like most braf folks who respond then yes you can take it again in the future if your doc agrees which would be his decision alone because there is nothing tying his hands. If not any other doc could prescribe it as well. I've even read of folks being off it for months because they quit responding then going back on and it starts working again.
Also I'm hesitant to say this but if you really don't want to take them since they are pills the docs might not really know if you take them or not. Thus you could do like you are now of having yervoy last July and not really on any cancer meds. Thus when it comes time to evaluate the affect of the braf then automatic failure I would assume thus on to pd1. Maybe it's my lack of sleep I even thought of that I dunno. Kind of a silly idea.
im doing better. Thanks for asking. Still have some issues coming off the pain meds and some nerve pain in my left foot and back of left leg. Otherwise all the other issues are minor so yeah I'm doing pretty good. Thanks for asking.
Artie
-
- March 21, 2015 at 4:03 am
If you take it now and they see no shrinkage then most likely you would be the small group of braf positive like me that do not respond to braf. Thus you probably would not want to take it in the future, if you are like most braf folks who respond then yes you can take it again in the future if your doc agrees which would be his decision alone because there is nothing tying his hands. If not any other doc could prescribe it as well. I've even read of folks being off it for months because they quit responding then going back on and it starts working again.
Also I'm hesitant to say this but if you really don't want to take them since they are pills the docs might not really know if you take them or not. Thus you could do like you are now of having yervoy last July and not really on any cancer meds. Thus when it comes time to evaluate the affect of the braf then automatic failure I would assume thus on to pd1. Maybe it's my lack of sleep I even thought of that I dunno. Kind of a silly idea.
im doing better. Thanks for asking. Still have some issues coming off the pain meds and some nerve pain in my left foot and back of left leg. Otherwise all the other issues are minor so yeah I'm doing pretty good. Thanks for asking.
Artie
-
- March 23, 2015 at 4:32 pm
I wanted to share my experience with this drug. My brother,stage 4, was on the GSK Trafinlar /Mek trial and did fantastic and had a 16 month run with an initial tumor reduction of 75%. Because there was some growth they had to take him off of the pills after the 16 months. The same scan also showed a reduction. The doctor said had he not been on the trial they may have waited a few more months to see what the next scan showed, but because of the trial protocol they could not do that. He had some intial side effects which were not too bad and eventually went away. He then went on Yervoy and then PD1. Although we think they slowed things down there was tumor growth so we had to move on. The doctor suggested IL2 , BUT MY BROTHER SAID WHAT ABOUT GOING BACK ON THE DRUG!! The doctor said, well there is not much research on this but lets give it a try because you have been off of it for a year. Well, the GOOD NEWS is the drug worked again and we are into our 10th month on the second go around. He has had no side effects. So I wanted to let everyone know that you CAN give this drug a second go round and also we have had wonderful results. PLEASE keep asking questions of your doctors and tell them about situations like this. It can only help.
BEST wishes and prayers to all. Keep fighting !!
-
- March 23, 2015 at 4:32 pm
I wanted to share my experience with this drug. My brother,stage 4, was on the GSK Trafinlar /Mek trial and did fantastic and had a 16 month run with an initial tumor reduction of 75%. Because there was some growth they had to take him off of the pills after the 16 months. The same scan also showed a reduction. The doctor said had he not been on the trial they may have waited a few more months to see what the next scan showed, but because of the trial protocol they could not do that. He had some intial side effects which were not too bad and eventually went away. He then went on Yervoy and then PD1. Although we think they slowed things down there was tumor growth so we had to move on. The doctor suggested IL2 , BUT MY BROTHER SAID WHAT ABOUT GOING BACK ON THE DRUG!! The doctor said, well there is not much research on this but lets give it a try because you have been off of it for a year. Well, the GOOD NEWS is the drug worked again and we are into our 10th month on the second go around. He has had no side effects. So I wanted to let everyone know that you CAN give this drug a second go round and also we have had wonderful results. PLEASE keep asking questions of your doctors and tell them about situations like this. It can only help.
BEST wishes and prayers to all. Keep fighting !!
-
- March 23, 2015 at 4:32 pm
I wanted to share my experience with this drug. My brother,stage 4, was on the GSK Trafinlar /Mek trial and did fantastic and had a 16 month run with an initial tumor reduction of 75%. Because there was some growth they had to take him off of the pills after the 16 months. The same scan also showed a reduction. The doctor said had he not been on the trial they may have waited a few more months to see what the next scan showed, but because of the trial protocol they could not do that. He had some intial side effects which were not too bad and eventually went away. He then went on Yervoy and then PD1. Although we think they slowed things down there was tumor growth so we had to move on. The doctor suggested IL2 , BUT MY BROTHER SAID WHAT ABOUT GOING BACK ON THE DRUG!! The doctor said, well there is not much research on this but lets give it a try because you have been off of it for a year. Well, the GOOD NEWS is the drug worked again and we are into our 10th month on the second go around. He has had no side effects. So I wanted to let everyone know that you CAN give this drug a second go round and also we have had wonderful results. PLEASE keep asking questions of your doctors and tell them about situations like this. It can only help.
BEST wishes and prayers to all. Keep fighting !!
-
- March 21, 2015 at 4:03 am
If you take it now and they see no shrinkage then most likely you would be the small group of braf positive like me that do not respond to braf. Thus you probably would not want to take it in the future, if you are like most braf folks who respond then yes you can take it again in the future if your doc agrees which would be his decision alone because there is nothing tying his hands. If not any other doc could prescribe it as well. I've even read of folks being off it for months because they quit responding then going back on and it starts working again.
Also I'm hesitant to say this but if you really don't want to take them since they are pills the docs might not really know if you take them or not. Thus you could do like you are now of having yervoy last July and not really on any cancer meds. Thus when it comes time to evaluate the affect of the braf then automatic failure I would assume thus on to pd1. Maybe it's my lack of sleep I even thought of that I dunno. Kind of a silly idea.
im doing better. Thanks for asking. Still have some issues coming off the pain meds and some nerve pain in my left foot and back of left leg. Otherwise all the other issues are minor so yeah I'm doing pretty good. Thanks for asking.
Artie
-
- You must be logged in to reply to this topic.