› Forums › General Melanoma Community › BRAF V600
- This topic has 27 replies, 6 voices, and was last updated 9 years, 8 months ago by
mrsriddle.
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- September 9, 2015 at 10:40 pm
I'm Stage IV, my Doctor has prescribed I start the combo drugs- Tafinlar + Trametinib. We are waiting for insurance to approve. Little nervous on starting this drug, I was told by the nurse that the side affects can go away after two weeks. Any insight on what I can expect, I have an office job and just wondering if I will need to take time off?
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- September 10, 2015 at 12:51 am
I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.
However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.
Artie
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- September 10, 2015 at 12:51 am
I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.
However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.
Artie
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- September 10, 2015 at 12:51 am
I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.
However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.
Artie
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- September 10, 2015 at 5:04 am
Is there a reason you are not starting with Yervoy of Keytruda first.
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- September 11, 2015 at 5:06 pm
Hi Jaco,
My Mom was in your position. She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.
We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation. It was the best decision we made and my Mom still has that option open to use.
As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion. They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.
You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.
– It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes. – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated.
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- September 11, 2015 at 5:06 pm
Hi Jaco,
My Mom was in your position. She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.
We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation. It was the best decision we made and my Mom still has that option open to use.
As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion. They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.
You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.
– It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes. – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated.
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- September 11, 2015 at 5:06 pm
Hi Jaco,
My Mom was in your position. She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.
We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation. It was the best decision we made and my Mom still has that option open to use.
As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion. They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.
You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.
– It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes. – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated.
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- September 11, 2015 at 2:58 am
Hey Jaco,
By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson.
I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less.
It's your decision, but you may want to do more research.
Ashley
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- September 11, 2015 at 11:12 am
Ashley,
By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally from Rugby, small world.
I have been doing alot of research on the combo drug, I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.
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- September 11, 2015 at 11:12 am
Ashley,
By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally from Rugby, small world.
I have been doing alot of research on the combo drug, I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.
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- September 11, 2015 at 11:12 am
Ashley,
By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally from Rugby, small world.
I have been doing alot of research on the combo drug, I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.
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- September 11, 2015 at 2:58 am
Hey Jaco,
By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson.
I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less.
It's your decision, but you may want to do more research.
Ashley
-
- September 11, 2015 at 2:58 am
Hey Jaco,
By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson.
I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less.
It's your decision, but you may want to do more research.
Ashley
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- September 11, 2015 at 4:18 pm
I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better.
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- September 11, 2015 at 4:18 pm
I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better.
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- September 11, 2015 at 4:18 pm
I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better.
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- September 14, 2015 at 12:29 pm
My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week. We are seeing some wonderful results. He had pneumonia last month and developed blood clots in both lungs. That is a reported event with the combo. We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now. He feels normal besides some fatigue from time to time. My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are. He has been working all the way through with no issues. Just so much uncertainty. Good luck and prayers for all!
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- September 14, 2015 at 12:29 pm
My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week. We are seeing some wonderful results. He had pneumonia last month and developed blood clots in both lungs. That is a reported event with the combo. We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now. He feels normal besides some fatigue from time to time. My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are. He has been working all the way through with no issues. Just so much uncertainty. Good luck and prayers for all!
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- September 14, 2015 at 12:29 pm
My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week. We are seeing some wonderful results. He had pneumonia last month and developed blood clots in both lungs. That is a reported event with the combo. We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now. He feels normal besides some fatigue from time to time. My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are. He has been working all the way through with no issues. Just so much uncertainty. Good luck and prayers for all!
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