› Forums › General Melanoma Community › BRAF Positive…Going on Z
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POW.
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- November 29, 2012 at 12:24 am
Hello everyone! I hope everyone had a great Thanksgiving. I found out Monday morning that I was BRAF positive!! Todays my birthday so I feel like i got my gift early. I’ve decided to start z asap. I am still going to look into trials but I feel like I need to start something. The last couple days have been pretty rough on me. I’m seriously short of breath and have been experiencing a lot of pain in my back and ribs. I think the lung tumors are growing quickly and I don’t feel like I have the time to wait for getting into a trial.Hello everyone! I hope everyone had a great Thanksgiving. I found out Monday morning that I was BRAF positive!! Todays my birthday so I feel like i got my gift early. I’ve decided to start z asap. I am still going to look into trials but I feel like I need to start something. The last couple days have been pretty rough on me. I’m seriously short of breath and have been experiencing a lot of pain in my back and ribs. I think the lung tumors are growing quickly and I don’t feel like I have the time to wait for getting into a trial. I meet with the onc tomorrow to go over side effects, although I feel like I understand what to expect by reading here. About how long does it take for side effects to kick in? Any advice? Do you lose all your hair? Its not like it matters but I want to be prepared as to what expect.
Thanks, Denise
- Replies
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- November 29, 2012 at 1:02 am
Denise,
First of all Happy Birthday!
I've been on Zelboraf since end of August for brain mets. My scan is next Wed and anxiety has started. Sometimes I just don't know if it's the brain mets or if it's the Zel. I had a CT a few weeks ago and 2 of my lung mets are gone and the third is just a shadow. They were originally tiny for the past 2 years. The onc wasn't sure but when they disappeared with the Zel he now feels that it was mel.
I have found that everyones side effects are different. Mine seem to change! I am loosing my hair. When I talked to the Dr a few weeks ago he said that some loose it but most just get a little thin. I am now down to 2×2 to keep the side effects I can handle. My eyes are my worst problem. I've been to 2 different eye drs and both are in agreement that it isn't uveitis.
I have just needed to have a root canal and had to go off of Zel for at least 2 days before I could start the procedure and needed to stay off for about 5 days till the dentist made the impression. Any dental procedure can cause issues and cause bleeding. Even a couple of weeks later I am still bleeding my teeth when brushing. Tomorrow I get the crown. This was not caused by the Zelboraf. I have been on and off steroids for the past year. I tended to grind my teeth while I was on the dex and this is now my 2nd fractured tooth has shown up 🙁
There are many common drugs that cause interactions with Zel. I have found to call my oncologist to check on each med. my family Dr puts me on because they really aren't aware. No grapefruit juice!
Good luck,
Linda
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- November 29, 2012 at 2:25 am
Thanks Linda this helps a lot. I know there are a lot of unknowns with this drug so getting as much info I can is helpful. I know what you mean about every ache and pain, I’ve been having headaches and since I haven’t had a brain mri the first thing I think is brain mets, I honestly don’t want to know. I’ve heard that z does work on brain mets so I bet your scan comes back clear! 🙂 -
- November 29, 2012 at 2:25 am
Thanks Linda this helps a lot. I know there are a lot of unknowns with this drug so getting as much info I can is helpful. I know what you mean about every ache and pain, I’ve been having headaches and since I haven’t had a brain mri the first thing I think is brain mets, I honestly don’t want to know. I’ve heard that z does work on brain mets so I bet your scan comes back clear! 🙂 -
- November 29, 2012 at 2:25 am
Thanks Linda this helps a lot. I know there are a lot of unknowns with this drug so getting as much info I can is helpful. I know what you mean about every ache and pain, I’ve been having headaches and since I haven’t had a brain mri the first thing I think is brain mets, I honestly don’t want to know. I’ve heard that z does work on brain mets so I bet your scan comes back clear! 🙂
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- November 29, 2012 at 1:02 am
Denise,
First of all Happy Birthday!
I've been on Zelboraf since end of August for brain mets. My scan is next Wed and anxiety has started. Sometimes I just don't know if it's the brain mets or if it's the Zel. I had a CT a few weeks ago and 2 of my lung mets are gone and the third is just a shadow. They were originally tiny for the past 2 years. The onc wasn't sure but when they disappeared with the Zel he now feels that it was mel.
I have found that everyones side effects are different. Mine seem to change! I am loosing my hair. When I talked to the Dr a few weeks ago he said that some loose it but most just get a little thin. I am now down to 2×2 to keep the side effects I can handle. My eyes are my worst problem. I've been to 2 different eye drs and both are in agreement that it isn't uveitis.
I have just needed to have a root canal and had to go off of Zel for at least 2 days before I could start the procedure and needed to stay off for about 5 days till the dentist made the impression. Any dental procedure can cause issues and cause bleeding. Even a couple of weeks later I am still bleeding my teeth when brushing. Tomorrow I get the crown. This was not caused by the Zelboraf. I have been on and off steroids for the past year. I tended to grind my teeth while I was on the dex and this is now my 2nd fractured tooth has shown up 🙁
There are many common drugs that cause interactions with Zel. I have found to call my oncologist to check on each med. my family Dr puts me on because they really aren't aware. No grapefruit juice!
Good luck,
Linda
-
- November 29, 2012 at 1:02 am
Denise,
First of all Happy Birthday!
I've been on Zelboraf since end of August for brain mets. My scan is next Wed and anxiety has started. Sometimes I just don't know if it's the brain mets or if it's the Zel. I had a CT a few weeks ago and 2 of my lung mets are gone and the third is just a shadow. They were originally tiny for the past 2 years. The onc wasn't sure but when they disappeared with the Zel he now feels that it was mel.
I have found that everyones side effects are different. Mine seem to change! I am loosing my hair. When I talked to the Dr a few weeks ago he said that some loose it but most just get a little thin. I am now down to 2×2 to keep the side effects I can handle. My eyes are my worst problem. I've been to 2 different eye drs and both are in agreement that it isn't uveitis.
I have just needed to have a root canal and had to go off of Zel for at least 2 days before I could start the procedure and needed to stay off for about 5 days till the dentist made the impression. Any dental procedure can cause issues and cause bleeding. Even a couple of weeks later I am still bleeding my teeth when brushing. Tomorrow I get the crown. This was not caused by the Zelboraf. I have been on and off steroids for the past year. I tended to grind my teeth while I was on the dex and this is now my 2nd fractured tooth has shown up 🙁
There are many common drugs that cause interactions with Zel. I have found to call my oncologist to check on each med. my family Dr puts me on because they really aren't aware. No grapefruit juice!
Good luck,
Linda
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- November 29, 2012 at 1:07 am
Denise,
I can't offer any input about Z. My brother is braf neg. I see your picture and we can pass for sisters. Just do a search for Z and you will get your answers. I wish you success on the drug. Please keep us posted. Just be happy that you have an option. So many don't have options and just hit on brick wall after another with this nasty disease. I enjoy reading posts like this.
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- November 29, 2012 at 1:07 am
Denise,
I can't offer any input about Z. My brother is braf neg. I see your picture and we can pass for sisters. Just do a search for Z and you will get your answers. I wish you success on the drug. Please keep us posted. Just be happy that you have an option. So many don't have options and just hit on brick wall after another with this nasty disease. I enjoy reading posts like this.
-
- November 29, 2012 at 1:07 am
Denise,
I can't offer any input about Z. My brother is braf neg. I see your picture and we can pass for sisters. Just do a search for Z and you will get your answers. I wish you success on the drug. Please keep us posted. Just be happy that you have an option. So many don't have options and just hit on brick wall after another with this nasty disease. I enjoy reading posts like this.
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- November 29, 2012 at 2:20 am
Denise. I hope your as fortunate as I’ve been with Z. Stay out of the sun!!!!. The first month or so I had arthritis feelings in legs and hands, worse in legs that subsided with anti-inflamatorys enough so that I could run 4 miles. At 2 months I had pain @ metatarsal heads (just behind toes @ bottom of feet,. This is partially due to my high arches. I’m@ 14 months on Z and pain in feet finally has lessened the last month. I’ve been able to work and able to stay on full dose. Walking just became difficult @ times. The largest nodule in lungs went from 4 cm to 4mm within the 1st 4 weeks.
So I feel like one of the fortunate ones….
The side effects seem to hit people @ their weakest points.Again winning you all the best, Denise
Bruce
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- November 29, 2012 at 2:57 am
Wow! You were running with a 4cm tumor?The largest tumor I have is 4.3 x 3.3 but that was about 3 weeks ago at last scan. I’m not running anywhere!! I am hoping for good results like you, I know the side effects seem tolerable but it will definitely be a life change. What about drinking a few beers or some wine? I imagine that’s probably not a good idea. -
- November 29, 2012 at 2:57 am
Wow! You were running with a 4cm tumor?The largest tumor I have is 4.3 x 3.3 but that was about 3 weeks ago at last scan. I’m not running anywhere!! I am hoping for good results like you, I know the side effects seem tolerable but it will definitely be a life change. What about drinking a few beers or some wine? I imagine that’s probably not a good idea. -
- November 29, 2012 at 2:57 am
Wow! You were running with a 4cm tumor?The largest tumor I have is 4.3 x 3.3 but that was about 3 weeks ago at last scan. I’m not running anywhere!! I am hoping for good results like you, I know the side effects seem tolerable but it will definitely be a life change. What about drinking a few beers or some wine? I imagine that’s probably not a good idea. -
- November 29, 2012 at 3:04 am
Hi, Denise. I'm so happy to hear that you are BRAF positive (who would ever think we'd be HAPPY to find out that we're mutants!
My brother has had a good response to Zelboraf with very few side effects. Some hair loss, some fatigue, and definite sun sensitivity. But overall, no big deal. I sure hope it works the same for you!
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- November 29, 2012 at 3:04 am
Hi, Denise. I'm so happy to hear that you are BRAF positive (who would ever think we'd be HAPPY to find out that we're mutants!
My brother has had a good response to Zelboraf with very few side effects. Some hair loss, some fatigue, and definite sun sensitivity. But overall, no big deal. I sure hope it works the same for you!
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- November 29, 2012 at 3:04 am
Hi, Denise. I'm so happy to hear that you are BRAF positive (who would ever think we'd be HAPPY to find out that we're mutants!
My brother has had a good response to Zelboraf with very few side effects. Some hair loss, some fatigue, and definite sun sensitivity. But overall, no big deal. I sure hope it works the same for you!
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- November 29, 2012 at 2:20 am
Denise. I hope your as fortunate as I’ve been with Z. Stay out of the sun!!!!. The first month or so I had arthritis feelings in legs and hands, worse in legs that subsided with anti-inflamatorys enough so that I could run 4 miles. At 2 months I had pain @ metatarsal heads (just behind toes @ bottom of feet,. This is partially due to my high arches. I’m@ 14 months on Z and pain in feet finally has lessened the last month. I’ve been able to work and able to stay on full dose. Walking just became difficult @ times. The largest nodule in lungs went from 4 cm to 4mm within the 1st 4 weeks.
So I feel like one of the fortunate ones….
The side effects seem to hit people @ their weakest points.Again winning you all the best, Denise
Bruce
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- November 29, 2012 at 2:20 am
Denise. I hope your as fortunate as I’ve been with Z. Stay out of the sun!!!!. The first month or so I had arthritis feelings in legs and hands, worse in legs that subsided with anti-inflamatorys enough so that I could run 4 miles. At 2 months I had pain @ metatarsal heads (just behind toes @ bottom of feet,. This is partially due to my high arches. I’m@ 14 months on Z and pain in feet finally has lessened the last month. I’ve been able to work and able to stay on full dose. Walking just became difficult @ times. The largest nodule in lungs went from 4 cm to 4mm within the 1st 4 weeks.
So I feel like one of the fortunate ones….
The side effects seem to hit people @ their weakest points.Again winning you all the best, Denise
Bruce
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- November 29, 2012 at 3:54 am
Hi Denise,
It is so good to hear from you and thank you for keeping us all up to date as you are on our hearts! I wish you luck with Z…treatment! I've read of so many encouraging stories here on MPIP of those who have had great success and I pray you will join them! I can relate with the pain, as mine increases with each PET scan as I learn of new tumors. It becomes a real challenge to cope as our minds start to mess with us and we start to feel everything… and then we question ourselves…is it real or is it me causing myself more pain because I'm aware…..we all feel and deal with it! Then we develop new pain that is not related to melanoma and your mind goes to work as you cannot help but think … is it related to my melanoma? ……it's a slippery slope!
I've been on this website a few years, mostly reading posts and have little experience in most situations. What I did experienced from 1 dose of yervoy is similar to those completing the full cycle. I did have significant hair loss and it would have been much easier for me to accept if it was mentioned to me before I started treatment, but it wasn't, so it seemed more traumatic! If you know what you're up against and the consequences, it makes your experience more tolerable but unfortunately with so many clinical trials…..they don't know! That is why this board is so important as we are the first to report many symptoms from the clinical trial treatments we are experiencing.
The best advice I can give you is stay positive, accept you will experience some downers and stay with this MPIP family, reporting your ups and downs…… and love and support will be yours! Wishing you all the very best and a soon a coveted NED status!
Swanee
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- November 29, 2012 at 3:54 am
Hi Denise,
It is so good to hear from you and thank you for keeping us all up to date as you are on our hearts! I wish you luck with Z…treatment! I've read of so many encouraging stories here on MPIP of those who have had great success and I pray you will join them! I can relate with the pain, as mine increases with each PET scan as I learn of new tumors. It becomes a real challenge to cope as our minds start to mess with us and we start to feel everything… and then we question ourselves…is it real or is it me causing myself more pain because I'm aware…..we all feel and deal with it! Then we develop new pain that is not related to melanoma and your mind goes to work as you cannot help but think … is it related to my melanoma? ……it's a slippery slope!
I've been on this website a few years, mostly reading posts and have little experience in most situations. What I did experienced from 1 dose of yervoy is similar to those completing the full cycle. I did have significant hair loss and it would have been much easier for me to accept if it was mentioned to me before I started treatment, but it wasn't, so it seemed more traumatic! If you know what you're up against and the consequences, it makes your experience more tolerable but unfortunately with so many clinical trials…..they don't know! That is why this board is so important as we are the first to report many symptoms from the clinical trial treatments we are experiencing.
The best advice I can give you is stay positive, accept you will experience some downers and stay with this MPIP family, reporting your ups and downs…… and love and support will be yours! Wishing you all the very best and a soon a coveted NED status!
Swanee
-
- November 29, 2012 at 3:54 am
Hi Denise,
It is so good to hear from you and thank you for keeping us all up to date as you are on our hearts! I wish you luck with Z…treatment! I've read of so many encouraging stories here on MPIP of those who have had great success and I pray you will join them! I can relate with the pain, as mine increases with each PET scan as I learn of new tumors. It becomes a real challenge to cope as our minds start to mess with us and we start to feel everything… and then we question ourselves…is it real or is it me causing myself more pain because I'm aware…..we all feel and deal with it! Then we develop new pain that is not related to melanoma and your mind goes to work as you cannot help but think … is it related to my melanoma? ……it's a slippery slope!
I've been on this website a few years, mostly reading posts and have little experience in most situations. What I did experienced from 1 dose of yervoy is similar to those completing the full cycle. I did have significant hair loss and it would have been much easier for me to accept if it was mentioned to me before I started treatment, but it wasn't, so it seemed more traumatic! If you know what you're up against and the consequences, it makes your experience more tolerable but unfortunately with so many clinical trials…..they don't know! That is why this board is so important as we are the first to report many symptoms from the clinical trial treatments we are experiencing.
The best advice I can give you is stay positive, accept you will experience some downers and stay with this MPIP family, reporting your ups and downs…… and love and support will be yours! Wishing you all the very best and a soon a coveted NED status!
Swanee
-
- November 29, 2012 at 4:38 pm
Hi Denise –
Good luck with Z. I was on it from the end of May until Sept. I had shrinkage in my July scans but then growth again for my Sept scans. So I went off Z, started Ipi and had to have surgery to remove a rather large tumor from my intestine.
As for side effects – I tried to capture most of them in my blog (http://www.melanomaandthecity.blogspot.com/2012/05/zelboraf-day-one.html). They started pretty quickly. First came joint pain – lots of it! It was so bad at night I woke up with headaches and sore jaw from clenching my teeth all night long. Then about 5 days in I started to notice red bumps all over. I had been itchy right away also. Then about day 8 or 10 came the full on rash! I went to bed thinking it was looking bad and it was worse in the morning. Then I just watched it spread all day long from chin to toes! I took a week off from Z and then started back up on the 3×3 dose. It was much more tolerable.
I did have my eye lashes and eye brows start to fall out right away as well as most body hair. I had pretty light hair on my arms already. Then about 2 months in I started to really notice my hair falling out. Never totally lost it all but pretty sure I lost 3/4's of it! It could have been due also to how low my hemoglobin had gotten… so hard to say!
Best of luck!
Erin
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- November 29, 2012 at 4:38 pm
Hi Denise –
Good luck with Z. I was on it from the end of May until Sept. I had shrinkage in my July scans but then growth again for my Sept scans. So I went off Z, started Ipi and had to have surgery to remove a rather large tumor from my intestine.
As for side effects – I tried to capture most of them in my blog (http://www.melanomaandthecity.blogspot.com/2012/05/zelboraf-day-one.html). They started pretty quickly. First came joint pain – lots of it! It was so bad at night I woke up with headaches and sore jaw from clenching my teeth all night long. Then about 5 days in I started to notice red bumps all over. I had been itchy right away also. Then about day 8 or 10 came the full on rash! I went to bed thinking it was looking bad and it was worse in the morning. Then I just watched it spread all day long from chin to toes! I took a week off from Z and then started back up on the 3×3 dose. It was much more tolerable.
I did have my eye lashes and eye brows start to fall out right away as well as most body hair. I had pretty light hair on my arms already. Then about 2 months in I started to really notice my hair falling out. Never totally lost it all but pretty sure I lost 3/4's of it! It could have been due also to how low my hemoglobin had gotten… so hard to say!
Best of luck!
Erin
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- November 29, 2012 at 4:38 pm
Hi Denise –
Good luck with Z. I was on it from the end of May until Sept. I had shrinkage in my July scans but then growth again for my Sept scans. So I went off Z, started Ipi and had to have surgery to remove a rather large tumor from my intestine.
As for side effects – I tried to capture most of them in my blog (http://www.melanomaandthecity.blogspot.com/2012/05/zelboraf-day-one.html). They started pretty quickly. First came joint pain – lots of it! It was so bad at night I woke up with headaches and sore jaw from clenching my teeth all night long. Then about 5 days in I started to notice red bumps all over. I had been itchy right away also. Then about day 8 or 10 came the full on rash! I went to bed thinking it was looking bad and it was worse in the morning. Then I just watched it spread all day long from chin to toes! I took a week off from Z and then started back up on the 3×3 dose. It was much more tolerable.
I did have my eye lashes and eye brows start to fall out right away as well as most body hair. I had pretty light hair on my arms already. Then about 2 months in I started to really notice my hair falling out. Never totally lost it all but pretty sure I lost 3/4's of it! It could have been due also to how low my hemoglobin had gotten… so hard to say!
Best of luck!
Erin
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- November 30, 2012 at 12:18 am
I hope it will work for you – remember there are loads of people without side effects, they don’t need bulletin boards! I did lose most of my hair on my head and almost everything everywhere else. Some of it coming back now, but not the same. Try not to obsess about the side effect info but if you notice something there are lots of people here with very helpful tips. -
- November 30, 2012 at 12:18 am
I hope it will work for you – remember there are loads of people without side effects, they don’t need bulletin boards! I did lose most of my hair on my head and almost everything everywhere else. Some of it coming back now, but not the same. Try not to obsess about the side effect info but if you notice something there are lots of people here with very helpful tips. -
- November 30, 2012 at 12:18 am
I hope it will work for you – remember there are loads of people without side effects, they don’t need bulletin boards! I did lose most of my hair on my head and almost everything everywhere else. Some of it coming back now, but not the same. Try not to obsess about the side effect info but if you notice something there are lots of people here with very helpful tips. -
- November 30, 2012 at 1:21 pm
GLad you have a plan 🙂 . And… Happy Birthday!!
I agree with what Amy said… everyone is so different. I would strongly caution abt sun exposure. When I started on Z, I was astonished to get a blistering sunburn with abt TWO MINUTES of sun exposure. And, typically, I never burn. I had to literally carry a parasol, and always wear a hat and sunscreen. This has actually lessened for me as time has gone on. I still have to be careful..just not AS careful. I also lost most of my hair … but not on my legs,LOL – go figure! My hair and eyebrows have begun to grow back, and I am able to go without a wig, but I did wear one for quite a while ( or scarves, etc). A lot of people seem to keep most of their hair. I would say, that since the side effects vary so much from person to person, you can get advice on here as you see how it goes. Z tends to be pretty quick to work, so I hope you will get relief from your pain and shortness of breath quickly…
Tina
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- November 30, 2012 at 1:21 pm
GLad you have a plan 🙂 . And… Happy Birthday!!
I agree with what Amy said… everyone is so different. I would strongly caution abt sun exposure. When I started on Z, I was astonished to get a blistering sunburn with abt TWO MINUTES of sun exposure. And, typically, I never burn. I had to literally carry a parasol, and always wear a hat and sunscreen. This has actually lessened for me as time has gone on. I still have to be careful..just not AS careful. I also lost most of my hair … but not on my legs,LOL – go figure! My hair and eyebrows have begun to grow back, and I am able to go without a wig, but I did wear one for quite a while ( or scarves, etc). A lot of people seem to keep most of their hair. I would say, that since the side effects vary so much from person to person, you can get advice on here as you see how it goes. Z tends to be pretty quick to work, so I hope you will get relief from your pain and shortness of breath quickly…
Tina
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- November 30, 2012 at 11:43 pm
Thanks Tina. It really helps hearing other peoples experiences. My doctor gave me a couple sheets of paper and kind of went over the side effects. I've been a bit obsessive with researching this lately but Heh it's our lives we're talking about and people keep telling me knowledge is power! Anyway I found a trial that I'm considering. The problem is they're not recruiting right now in San Francisco. I'm going to post a new topic asking about how long it takes for them to start, I called and emailed them but haven't heard back yet. It's a trial of Zelboraf alone VS Zelboraf with Mek inhibitor. Its randomized but I figure hey if I only get the Z that's what I'm going to do anyway.
Thank you everyone for your help. When I did Interferon for only 13 high dose infusions I lost about 1/2 of my hair. It was actually pretty nice since I have such thick hair. I'm not worried about losing my hair. I'm more about quality of life with doable side effects. I felt so horrible on Interferon I told the doctor that I didn't care if it came back I wasn't going to live my life feeling like I'm dying everyday! That was different though because I wasn't stage 4. Now I'm willing to tolerate more side effects if it's going to keep me around. I honestly get amazed everyday that I read some of these posts. The courage and hope that it gives me is incredible!!
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- November 30, 2012 at 11:43 pm
Thanks Tina. It really helps hearing other peoples experiences. My doctor gave me a couple sheets of paper and kind of went over the side effects. I've been a bit obsessive with researching this lately but Heh it's our lives we're talking about and people keep telling me knowledge is power! Anyway I found a trial that I'm considering. The problem is they're not recruiting right now in San Francisco. I'm going to post a new topic asking about how long it takes for them to start, I called and emailed them but haven't heard back yet. It's a trial of Zelboraf alone VS Zelboraf with Mek inhibitor. Its randomized but I figure hey if I only get the Z that's what I'm going to do anyway.
Thank you everyone for your help. When I did Interferon for only 13 high dose infusions I lost about 1/2 of my hair. It was actually pretty nice since I have such thick hair. I'm not worried about losing my hair. I'm more about quality of life with doable side effects. I felt so horrible on Interferon I told the doctor that I didn't care if it came back I wasn't going to live my life feeling like I'm dying everyday! That was different though because I wasn't stage 4. Now I'm willing to tolerate more side effects if it's going to keep me around. I honestly get amazed everyday that I read some of these posts. The courage and hope that it gives me is incredible!!
-
- November 30, 2012 at 11:43 pm
Thanks Tina. It really helps hearing other peoples experiences. My doctor gave me a couple sheets of paper and kind of went over the side effects. I've been a bit obsessive with researching this lately but Heh it's our lives we're talking about and people keep telling me knowledge is power! Anyway I found a trial that I'm considering. The problem is they're not recruiting right now in San Francisco. I'm going to post a new topic asking about how long it takes for them to start, I called and emailed them but haven't heard back yet. It's a trial of Zelboraf alone VS Zelboraf with Mek inhibitor. Its randomized but I figure hey if I only get the Z that's what I'm going to do anyway.
Thank you everyone for your help. When I did Interferon for only 13 high dose infusions I lost about 1/2 of my hair. It was actually pretty nice since I have such thick hair. I'm not worried about losing my hair. I'm more about quality of life with doable side effects. I felt so horrible on Interferon I told the doctor that I didn't care if it came back I wasn't going to live my life feeling like I'm dying everyday! That was different though because I wasn't stage 4. Now I'm willing to tolerate more side effects if it's going to keep me around. I honestly get amazed everyday that I read some of these posts. The courage and hope that it gives me is incredible!!
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- December 1, 2012 at 12:09 am
If you want to go the clinical trial route, GSK has a drug very similar to Zelboraf that's called Dabrafenib that's not yet FDA approved. They also have a MEK inhibitor called Trametinib. They are currently doing a clinical trial comparing Dabrafenib alone to Dabrafenib + Trametinib. You might check into that. When I searched ClinicalTrials.gov for "melanome AND BRAF AND MEK" I found 15 active trials. I didn't read them all and not all of them will be appropriate for you. However, I think if you widen your search beyond just Zelboraf+MEK you might find some good options.
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- December 1, 2012 at 12:09 am
If you want to go the clinical trial route, GSK has a drug very similar to Zelboraf that's called Dabrafenib that's not yet FDA approved. They also have a MEK inhibitor called Trametinib. They are currently doing a clinical trial comparing Dabrafenib alone to Dabrafenib + Trametinib. You might check into that. When I searched ClinicalTrials.gov for "melanome AND BRAF AND MEK" I found 15 active trials. I didn't read them all and not all of them will be appropriate for you. However, I think if you widen your search beyond just Zelboraf+MEK you might find some good options.
-
- December 1, 2012 at 12:09 am
If you want to go the clinical trial route, GSK has a drug very similar to Zelboraf that's called Dabrafenib that's not yet FDA approved. They also have a MEK inhibitor called Trametinib. They are currently doing a clinical trial comparing Dabrafenib alone to Dabrafenib + Trametinib. You might check into that. When I searched ClinicalTrials.gov for "melanome AND BRAF AND MEK" I found 15 active trials. I didn't read them all and not all of them will be appropriate for you. However, I think if you widen your search beyond just Zelboraf+MEK you might find some good options.
-
- November 30, 2012 at 1:21 pm
GLad you have a plan 🙂 . And… Happy Birthday!!
I agree with what Amy said… everyone is so different. I would strongly caution abt sun exposure. When I started on Z, I was astonished to get a blistering sunburn with abt TWO MINUTES of sun exposure. And, typically, I never burn. I had to literally carry a parasol, and always wear a hat and sunscreen. This has actually lessened for me as time has gone on. I still have to be careful..just not AS careful. I also lost most of my hair … but not on my legs,LOL – go figure! My hair and eyebrows have begun to grow back, and I am able to go without a wig, but I did wear one for quite a while ( or scarves, etc). A lot of people seem to keep most of their hair. I would say, that since the side effects vary so much from person to person, you can get advice on here as you see how it goes. Z tends to be pretty quick to work, so I hope you will get relief from your pain and shortness of breath quickly…
Tina
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