› Forums › General Melanoma Community › Stage IV BRAF melanoma/ anyone have info?
- This topic has 24 replies, 5 voices, and was last updated 8 years, 9 months ago by
mrsriddle.
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- June 7, 2015 at 11:14 pm
My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel. He had one lymph node removed from under his left arm that was also BRAF melanoma. He has just started on his chemo meds. He is taking Tafinlar + Mekinist. 3 days in he is doing well with it and so far has a wonderful appetite. Any one with any information or experiences with these two drugs?
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- June 8, 2015 at 2:01 am
Yes, my brother has been on this combination two times. The first time he was on the trial and had a wonderful 16 month successful run. Because there was some growth they had to take him off because of the trial protocol. He then had immunotherapy that slowed things down a bit but then needed another treatment. He was off the taf & mek combo for one year so we tried it again and now he is doing great for one year and praying many more. So yes this is a GREAT MIRACLE combo. It can have some side effects but my brother had a few the first time around and none this time. IMPORTANT please make sure he follows directions on how to take them. My brother stops eating at 9:00, takes his pills at 11:00 and then eats at 12:00. Also he has been told NO grapefruit, pomegranate or ginsing. This drug works for alot of folks so I am praying for huge success for your husband. Keep us posted.
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- June 10, 2015 at 12:37 pm
That is so encouraging!! Thank you so much for sharing. This is so hard, and all of the websites just give us statistics that just bring us down. We need this kind of news to get us through, from real people with this cancer. Prayers to your brother to keep going strong! 🙂
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- June 10, 2015 at 12:37 pm
That is so encouraging!! Thank you so much for sharing. This is so hard, and all of the websites just give us statistics that just bring us down. We need this kind of news to get us through, from real people with this cancer. Prayers to your brother to keep going strong! 🙂
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- June 10, 2015 at 12:37 pm
That is so encouraging!! Thank you so much for sharing. This is so hard, and all of the websites just give us statistics that just bring us down. We need this kind of news to get us through, from real people with this cancer. Prayers to your brother to keep going strong! 🙂
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- June 8, 2015 at 2:01 am
Yes, my brother has been on this combination two times. The first time he was on the trial and had a wonderful 16 month successful run. Because there was some growth they had to take him off because of the trial protocol. He then had immunotherapy that slowed things down a bit but then needed another treatment. He was off the taf & mek combo for one year so we tried it again and now he is doing great for one year and praying many more. So yes this is a GREAT MIRACLE combo. It can have some side effects but my brother had a few the first time around and none this time. IMPORTANT please make sure he follows directions on how to take them. My brother stops eating at 9:00, takes his pills at 11:00 and then eats at 12:00. Also he has been told NO grapefruit, pomegranate or ginsing. This drug works for alot of folks so I am praying for huge success for your husband. Keep us posted.
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- June 8, 2015 at 2:01 am
Yes, my brother has been on this combination two times. The first time he was on the trial and had a wonderful 16 month successful run. Because there was some growth they had to take him off because of the trial protocol. He then had immunotherapy that slowed things down a bit but then needed another treatment. He was off the taf & mek combo for one year so we tried it again and now he is doing great for one year and praying many more. So yes this is a GREAT MIRACLE combo. It can have some side effects but my brother had a few the first time around and none this time. IMPORTANT please make sure he follows directions on how to take them. My brother stops eating at 9:00, takes his pills at 11:00 and then eats at 12:00. Also he has been told NO grapefruit, pomegranate or ginsing. This drug works for alot of folks so I am praying for huge success for your husband. Keep us posted.
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- June 8, 2015 at 11:44 am
I was on those for about 10 weeks. Main side affect was fevers of about 103 every day. Other than that in week 8 I had 3 days of massive chills shakes fever of 105 throwing up a little. Other than that the meds were fine for me. They kept most everything from growing but nothing shrank. Couple tumors grew like crazy and a new one showed up. I got on pd1 after that.
Artie
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- July 29, 2015 at 3:37 am
Don't forget to share how your husband is doing, I think that Charles is just about a month behind him…..he has been pretty sick the last few days….really nausous, joint pain, so tired…..about 8 days or so in. Is your husband doing good still? We see the oncologist next week for the first 2 week pulse check – I am hoping that Charles is like your husband and will sail smoothly.
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- August 6, 2015 at 3:08 pm
Hi Rita and Charles! My husband has been doing great on the combo! No side effects noted at all. He was doing so good on it we forgot he had cancer at all 🙂 However, we need to be more aware that he IS on chemo and that his immune system is compromised. This past week he was hospitalized for pneumonia in both lungs. After a week of heavy antibiotics pouring in by IV, we are home and he is very well. The Dr. took him off of his combo for a week to heal and he goes in Monday for another apt. He should have his first post combo scan in September. His liver enzymes are elevated a bit, but they are thinking it is due to all of the antibiotics. Other than that he is doing great! The only fevers he has had were due to the pneumonia. I will keep you posted. How is all going your way?
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- August 6, 2015 at 3:08 pm
Hi Rita and Charles! My husband has been doing great on the combo! No side effects noted at all. He was doing so good on it we forgot he had cancer at all 🙂 However, we need to be more aware that he IS on chemo and that his immune system is compromised. This past week he was hospitalized for pneumonia in both lungs. After a week of heavy antibiotics pouring in by IV, we are home and he is very well. The Dr. took him off of his combo for a week to heal and he goes in Monday for another apt. He should have his first post combo scan in September. His liver enzymes are elevated a bit, but they are thinking it is due to all of the antibiotics. Other than that he is doing great! The only fevers he has had were due to the pneumonia. I will keep you posted. How is all going your way?
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- August 6, 2015 at 3:08 pm
Hi Rita and Charles! My husband has been doing great on the combo! No side effects noted at all. He was doing so good on it we forgot he had cancer at all 🙂 However, we need to be more aware that he IS on chemo and that his immune system is compromised. This past week he was hospitalized for pneumonia in both lungs. After a week of heavy antibiotics pouring in by IV, we are home and he is very well. The Dr. took him off of his combo for a week to heal and he goes in Monday for another apt. He should have his first post combo scan in September. His liver enzymes are elevated a bit, but they are thinking it is due to all of the antibiotics. Other than that he is doing great! The only fevers he has had were due to the pneumonia. I will keep you posted. How is all going your way?
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- July 29, 2015 at 3:37 am
Don't forget to share how your husband is doing, I think that Charles is just about a month behind him…..he has been pretty sick the last few days….really nausous, joint pain, so tired…..about 8 days or so in. Is your husband doing good still? We see the oncologist next week for the first 2 week pulse check – I am hoping that Charles is like your husband and will sail smoothly.
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- July 29, 2015 at 3:37 am
Don't forget to share how your husband is doing, I think that Charles is just about a month behind him…..he has been pretty sick the last few days….really nausous, joint pain, so tired…..about 8 days or so in. Is your husband doing good still? We see the oncologist next week for the first 2 week pulse check – I am hoping that Charles is like your husband and will sail smoothly.
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- June 8, 2015 at 11:44 am
I was on those for about 10 weeks. Main side affect was fevers of about 103 every day. Other than that in week 8 I had 3 days of massive chills shakes fever of 105 throwing up a little. Other than that the meds were fine for me. They kept most everything from growing but nothing shrank. Couple tumors grew like crazy and a new one showed up. I got on pd1 after that.
Artie
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- June 8, 2015 at 11:44 am
I was on those for about 10 weeks. Main side affect was fevers of about 103 every day. Other than that in week 8 I had 3 days of massive chills shakes fever of 105 throwing up a little. Other than that the meds were fine for me. They kept most everything from growing but nothing shrank. Couple tumors grew like crazy and a new one showed up. I got on pd1 after that.
Artie
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- June 8, 2015 at 3:15 pm
Hello:
I was diagnosed stage 4 mid September 2014. Did the 4 rounds of Yervoy and it sopped things for a while, but by early January of this year I was having increasing pain and spitting up blood. Up to that point I had been going to my regional cancer center in central Illinois, but I went and saw Dr. Gajweski (sp) at the University of Chicago. He said this combo would be the standard treatment for where I was at. I remember being surprised when he said I would probably feel the effects very quickly.
He was right. Within 3 days I stopped spitting up blood and the pain went down. I've been on the combo now for almost 3 months without any side effects. I've been doing regular MUGA heat scans and so far those have been good. I have a PET scan in two days, my first since starting these drugs, and I'm really interested/excited to see the results.
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- June 8, 2015 at 3:15 pm
Hello:
I was diagnosed stage 4 mid September 2014. Did the 4 rounds of Yervoy and it sopped things for a while, but by early January of this year I was having increasing pain and spitting up blood. Up to that point I had been going to my regional cancer center in central Illinois, but I went and saw Dr. Gajweski (sp) at the University of Chicago. He said this combo would be the standard treatment for where I was at. I remember being surprised when he said I would probably feel the effects very quickly.
He was right. Within 3 days I stopped spitting up blood and the pain went down. I've been on the combo now for almost 3 months without any side effects. I've been doing regular MUGA heat scans and so far those have been good. I have a PET scan in two days, my first since starting these drugs, and I'm really interested/excited to see the results.
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- June 8, 2015 at 3:15 pm
Hello:
I was diagnosed stage 4 mid September 2014. Did the 4 rounds of Yervoy and it sopped things for a while, but by early January of this year I was having increasing pain and spitting up blood. Up to that point I had been going to my regional cancer center in central Illinois, but I went and saw Dr. Gajweski (sp) at the University of Chicago. He said this combo would be the standard treatment for where I was at. I remember being surprised when he said I would probably feel the effects very quickly.
He was right. Within 3 days I stopped spitting up blood and the pain went down. I've been on the combo now for almost 3 months without any side effects. I've been doing regular MUGA heat scans and so far those have been good. I have a PET scan in two days, my first since starting these drugs, and I'm really interested/excited to see the results.
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- June 10, 2015 at 12:41 pm
Thank you for sharing. My husband has been on this combo for a week now with no side effects so far. He has never had any pain with this and no other symptoms besides iron deficiency anemia. I am praying for good results. I know we will fight this forever, but I am so thankful for the time we have and each new day is a blessing. Good luck and prayers for you!
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- June 10, 2015 at 12:41 pm
Thank you for sharing. My husband has been on this combo for a week now with no side effects so far. He has never had any pain with this and no other symptoms besides iron deficiency anemia. I am praying for good results. I know we will fight this forever, but I am so thankful for the time we have and each new day is a blessing. Good luck and prayers for you!
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- June 10, 2015 at 12:41 pm
Thank you for sharing. My husband has been on this combo for a week now with no side effects so far. He has never had any pain with this and no other symptoms besides iron deficiency anemia. I am praying for good results. I know we will fight this forever, but I am so thankful for the time we have and each new day is a blessing. Good luck and prayers for you!
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