› Forums › General Melanoma Community › Brain Mets
- This topic has 18 replies, 5 voices, and was last updated 13 years, 6 months ago by
killmel.
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- November 4, 2011 at 8:15 pm
There are so many post within the last few weeks from brave warriors dealing with Brain Mets. Is it me, or does anyone else see that too?
My heart & prayers go out to each and everyone of you.
There are so many post within the last few weeks from brave warriors dealing with Brain Mets. Is it me, or does anyone else see that too?
My heart & prayers go out to each and everyone of you.
- Replies
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- November 4, 2011 at 8:53 pm
I have been on and off this board for about 10 years. I've always seen that there is a trend and a few have brain mets at the same time. This is the first time I really believe there are so many!!!! When b-raf drugs came out many blaimed that when the disease progressed it seemed to go to the brain. There was no proof of this but lots of discussion. At the time I personally had been NED at the time so there was no drug was associated.
Maybe we do need to make a post and have everyone post under this. Of course the weekend is always slow.
At least we can support each other. I did find that I went off of the board for about 2 weeks once I posted. I just needed to gather myself and also during the beginning I was having such language issues that it was difficult to type anyway. Many on the board were unbelievably supportive. I had personal e-mails, facebooked and phone calls. Many sent me their number and just wasn't even enough time to talk to that many but I kept their numbers and I know that I could call them.
Linda
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- November 4, 2011 at 9:15 pm
Hi
Linda, It is funny that you mentioned BRAF . I do remember people questioning if braf brought on brain mets. It was the time Amy Busby was going through treatment. God rest her soul.
I have been considering IPI as a treatment for 6 + months. I have been watching & reading post from IPI people. I have never posted anything but I have seen many people who have taken IPI then get Brain mets. That is not to say, that if they did not take IPI, they would have still got brain mets. Impossible to prove, one way or the other.
I agree with Linda's suggestion, please post if you got brain mets after taking a certain treatment. It will really not prove anything but some people might find it interesting. I have seen post by people that did wonder if a certain treatment brought on the brain mets.
God bless you all
Mary
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- November 4, 2011 at 9:15 pm
Hi
Linda, It is funny that you mentioned BRAF . I do remember people questioning if braf brought on brain mets. It was the time Amy Busby was going through treatment. God rest her soul.
I have been considering IPI as a treatment for 6 + months. I have been watching & reading post from IPI people. I have never posted anything but I have seen many people who have taken IPI then get Brain mets. That is not to say, that if they did not take IPI, they would have still got brain mets. Impossible to prove, one way or the other.
I agree with Linda's suggestion, please post if you got brain mets after taking a certain treatment. It will really not prove anything but some people might find it interesting. I have seen post by people that did wonder if a certain treatment brought on the brain mets.
God bless you all
Mary
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- November 4, 2011 at 10:41 pm
I just finished ipi and now have 2 small brain mets. I don't believe ipi causes brain mets. I think when you have mets and start ipi, it takes awhile for it to work, so the cancer can grow and spread where it wants while waiting. Once ipi kicks in, you hope it starts regressing tumours. My lymphocytes doubled and can still find their way into my brain and work.
Even though I have brain mets now, my oncologist wonders if the ipi is actually the cause of 1 of my tumours bleeding and starting tumour death. There is just no way of knowing right now. We need Jimmy B to figure that out with pictures 🙂
Lisa
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- November 4, 2011 at 10:41 pm
I just finished ipi and now have 2 small brain mets. I don't believe ipi causes brain mets. I think when you have mets and start ipi, it takes awhile for it to work, so the cancer can grow and spread where it wants while waiting. Once ipi kicks in, you hope it starts regressing tumours. My lymphocytes doubled and can still find their way into my brain and work.
Even though I have brain mets now, my oncologist wonders if the ipi is actually the cause of 1 of my tumours bleeding and starting tumour death. There is just no way of knowing right now. We need Jimmy B to figure that out with pictures 🙂
Lisa
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- November 4, 2011 at 10:41 pm
I just finished ipi and now have 2 small brain mets. I don't believe ipi causes brain mets. I think when you have mets and start ipi, it takes awhile for it to work, so the cancer can grow and spread where it wants while waiting. Once ipi kicks in, you hope it starts regressing tumours. My lymphocytes doubled and can still find their way into my brain and work.
Even though I have brain mets now, my oncologist wonders if the ipi is actually the cause of 1 of my tumours bleeding and starting tumour death. There is just no way of knowing right now. We need Jimmy B to figure that out with pictures 🙂
Lisa
-
- November 4, 2011 at 9:15 pm
Hi
Linda, It is funny that you mentioned BRAF . I do remember people questioning if braf brought on brain mets. It was the time Amy Busby was going through treatment. God rest her soul.
I have been considering IPI as a treatment for 6 + months. I have been watching & reading post from IPI people. I have never posted anything but I have seen many people who have taken IPI then get Brain mets. That is not to say, that if they did not take IPI, they would have still got brain mets. Impossible to prove, one way or the other.
I agree with Linda's suggestion, please post if you got brain mets after taking a certain treatment. It will really not prove anything but some people might find it interesting. I have seen post by people that did wonder if a certain treatment brought on the brain mets.
God bless you all
Mary
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- November 5, 2011 at 12:31 pm
Linda, you pose an interesting question. I just entered my 12th year fighting melanoma, and I have always had clear brain MRI's until this July when my brain scans showed too many brain mets to count. I was absolutely floored. So I completed Whole Brain Radiation Treatment (WBRT) followed by a 42 day Temodar chemo program. My next brain MRI is this Monday the 7th. I hope and pray that at least the scans will show no new brain mets have developed since my last scans on August 29th.
I have posted here before that it just might be a coincidence that the brain mets arrived after I completed two 10 week infusion programs using Yervoy. To be brain met free for 11 years and then have this happen is very unsettling. I know that many of you have had success using Yervoy. But it just goes to show that there are no guarantees in life. I'm thankful for all the chemo therapies I have taken that have extended my life, for my oncologist and the drug companies that continue to invest in finding cures for melanoma. Continue the fight as I do. We have no choice.
Bruce in New Hampshire
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- November 4, 2011 at 8:53 pm
I have been on and off this board for about 10 years. I've always seen that there is a trend and a few have brain mets at the same time. This is the first time I really believe there are so many!!!! When b-raf drugs came out many blaimed that when the disease progressed it seemed to go to the brain. There was no proof of this but lots of discussion. At the time I personally had been NED at the time so there was no drug was associated.
Maybe we do need to make a post and have everyone post under this. Of course the weekend is always slow.
At least we can support each other. I did find that I went off of the board for about 2 weeks once I posted. I just needed to gather myself and also during the beginning I was having such language issues that it was difficult to type anyway. Many on the board were unbelievably supportive. I had personal e-mails, facebooked and phone calls. Many sent me their number and just wasn't even enough time to talk to that many but I kept their numbers and I know that I could call them.
Linda
-
- November 4, 2011 at 8:53 pm
I have been on and off this board for about 10 years. I've always seen that there is a trend and a few have brain mets at the same time. This is the first time I really believe there are so many!!!! When b-raf drugs came out many blaimed that when the disease progressed it seemed to go to the brain. There was no proof of this but lots of discussion. At the time I personally had been NED at the time so there was no drug was associated.
Maybe we do need to make a post and have everyone post under this. Of course the weekend is always slow.
At least we can support each other. I did find that I went off of the board for about 2 weeks once I posted. I just needed to gather myself and also during the beginning I was having such language issues that it was difficult to type anyway. Many on the board were unbelievably supportive. I had personal e-mails, facebooked and phone calls. Many sent me their number and just wasn't even enough time to talk to that many but I kept their numbers and I know that I could call them.
Linda
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- November 6, 2011 at 5:26 am
I would love to see a thorough review of cases as well as our informal survey that Linda suggested. I remember that just when I wanted to try the Ipi on a compassionate basis, they changed the the rules and said that they would only provide it for people that had brain mets. It seems to have helps some people with brain mets and possibly increased the likelihood in others. Several years ago I read that approximately 40% of melanoma patients would get brain mets. Wonder what the % of people that took Ipi have gotten the brain mets? As always I have more questions than absolute answers.
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- November 6, 2011 at 8:08 pm
maybe this post should be re-posted with a different title Like "ROLLCALL"..I am newbie & do not know how things are done so it is only a suggestion. if someone knows how to take Linda's suggestion & post it with a differnet title maybe more people will respond. just my 2 cents
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- November 6, 2011 at 8:08 pm
maybe this post should be re-posted with a different title Like "ROLLCALL"..I am newbie & do not know how things are done so it is only a suggestion. if someone knows how to take Linda's suggestion & post it with a differnet title maybe more people will respond. just my 2 cents
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- November 6, 2011 at 8:08 pm
maybe this post should be re-posted with a different title Like "ROLLCALL"..I am newbie & do not know how things are done so it is only a suggestion. if someone knows how to take Linda's suggestion & post it with a differnet title maybe more people will respond. just my 2 cents
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- November 6, 2011 at 5:26 am
I would love to see a thorough review of cases as well as our informal survey that Linda suggested. I remember that just when I wanted to try the Ipi on a compassionate basis, they changed the the rules and said that they would only provide it for people that had brain mets. It seems to have helps some people with brain mets and possibly increased the likelihood in others. Several years ago I read that approximately 40% of melanoma patients would get brain mets. Wonder what the % of people that took Ipi have gotten the brain mets? As always I have more questions than absolute answers.
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- November 6, 2011 at 5:26 am
I would love to see a thorough review of cases as well as our informal survey that Linda suggested. I remember that just when I wanted to try the Ipi on a compassionate basis, they changed the the rules and said that they would only provide it for people that had brain mets. It seems to have helps some people with brain mets and possibly increased the likelihood in others. Several years ago I read that approximately 40% of melanoma patients would get brain mets. Wonder what the % of people that took Ipi have gotten the brain mets? As always I have more questions than absolute answers.
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