› Forums › General Melanoma Community › bleeding brain met, liver inflammation
- This topic has 33 replies, 6 voices, and was last updated 10 years, 7 months ago by
yazziemac.
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- April 22, 2015 at 11:25 am
Hi
My husband, Pete, found out yesterday that one of his many brain mets is bleeding and his liver is very inflamed. He finished 5 days of whole brain radiation last week and was scheduled to have his 3rd Ippi infusion today. He has to take a break from the Ippi and switch from Dexamethasone to Prednisone to try to address the liver and brain bleeding. We'll be meeting with the oncologist weekly for blood work. If he develops very bad headaches, we are to go to emerg. I did a search on brain bleeds here on the forums and all the posts that I could find seemed to indicate that bleeding brain mets signalled "the end". Is that the case? No one has mentioned hospice to us at this point. Pete isn't in pain, his only symptom is extreme fatigue and some unsteadiness with walking. I would really appreciate your feedback.
Thanks,
Yasmin
- Replies
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- April 22, 2015 at 4:01 pm
Hi Yasmin,
My understanding is that they can still continue to do treatement even with a brain met that is bleeding and that it doesn't necessarily mean "the end". WIth that being said, I would have the conversation with your doctor. Does he still plan on giving him the Ipi? I know with my family memeber who had Melanom, we had the conversation with the doctor that their may become a point there is a "hard stop" meaning based on the progression, the treatment would no long be beneficial. His doctor was very firm when that point came and we moved him to hospice.
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- April 22, 2015 at 4:54 pm
Thanks for your reply—at this point the doctor says they will wait a few weeks and do blood work weekly, to see if the liver inflammation gets resolved. The liver is the primary reason the Ipi is on hold currently. If Pete were to get the Ipi now, there is a chance he would go into liver failure. The bleeding brain met was not the reason for the Ipi to be on hold, as I understand it. If the liver calms down, Ipi will resume in a few weeks. I'm just feeling really scared about this bleeding brain met and the lack of treatment (other than steroids) for a period of a few weeks. Pete's tumours grow so rapidly that a few weeks seems like a very long time to wait for the next Ipi…
Yasmin
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- April 23, 2015 at 1:27 am
Yasmin,
Is moving to an anti-pd1 drug an option? I think disease progression is not the only reason you could be considered a ipi failure. Severe side effects could also make you a ipi failure and hence eligible for anti-pd1. Wish you and your husband well.
Brian
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- April 24, 2015 at 5:01 pm
Since pd1 is fda approved unstable brain Mets should not be a reason for not getting it like the strict rules they had when it was in trial. Now the liver on the other hand could be a reason just like ipi however for keytruda at least the liver toxicity is way less than ipi from what I've seen. So it could be an option in my opinion. Rick's wife has had a great comeback with pd1 and the taf mek combo for her brain stuff. Good luck to you folks too.
Artie
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- April 24, 2015 at 5:01 pm
Since pd1 is fda approved unstable brain Mets should not be a reason for not getting it like the strict rules they had when it was in trial. Now the liver on the other hand could be a reason just like ipi however for keytruda at least the liver toxicity is way less than ipi from what I've seen. So it could be an option in my opinion. Rick's wife has had a great comeback with pd1 and the taf mek combo for her brain stuff. Good luck to you folks too.
Artie
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- April 24, 2015 at 5:01 pm
Since pd1 is fda approved unstable brain Mets should not be a reason for not getting it like the strict rules they had when it was in trial. Now the liver on the other hand could be a reason just like ipi however for keytruda at least the liver toxicity is way less than ipi from what I've seen. So it could be an option in my opinion. Rick's wife has had a great comeback with pd1 and the taf mek combo for her brain stuff. Good luck to you folks too.
Artie
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- April 23, 2015 at 1:27 am
Yasmin,
Is moving to an anti-pd1 drug an option? I think disease progression is not the only reason you could be considered a ipi failure. Severe side effects could also make you a ipi failure and hence eligible for anti-pd1. Wish you and your husband well.
Brian
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- April 23, 2015 at 1:27 am
Yasmin,
Is moving to an anti-pd1 drug an option? I think disease progression is not the only reason you could be considered a ipi failure. Severe side effects could also make you a ipi failure and hence eligible for anti-pd1. Wish you and your husband well.
Brian
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- April 22, 2015 at 4:54 pm
Thanks for your reply—at this point the doctor says they will wait a few weeks and do blood work weekly, to see if the liver inflammation gets resolved. The liver is the primary reason the Ipi is on hold currently. If Pete were to get the Ipi now, there is a chance he would go into liver failure. The bleeding brain met was not the reason for the Ipi to be on hold, as I understand it. If the liver calms down, Ipi will resume in a few weeks. I'm just feeling really scared about this bleeding brain met and the lack of treatment (other than steroids) for a period of a few weeks. Pete's tumours grow so rapidly that a few weeks seems like a very long time to wait for the next Ipi…
Yasmin
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- April 22, 2015 at 4:54 pm
Thanks for your reply—at this point the doctor says they will wait a few weeks and do blood work weekly, to see if the liver inflammation gets resolved. The liver is the primary reason the Ipi is on hold currently. If Pete were to get the Ipi now, there is a chance he would go into liver failure. The bleeding brain met was not the reason for the Ipi to be on hold, as I understand it. If the liver calms down, Ipi will resume in a few weeks. I'm just feeling really scared about this bleeding brain met and the lack of treatment (other than steroids) for a period of a few weeks. Pete's tumours grow so rapidly that a few weeks seems like a very long time to wait for the next Ipi…
Yasmin
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- April 22, 2015 at 4:01 pm
Hi Yasmin,
My understanding is that they can still continue to do treatement even with a brain met that is bleeding and that it doesn't necessarily mean "the end". WIth that being said, I would have the conversation with your doctor. Does he still plan on giving him the Ipi? I know with my family memeber who had Melanom, we had the conversation with the doctor that their may become a point there is a "hard stop" meaning based on the progression, the treatment would no long be beneficial. His doctor was very firm when that point came and we moved him to hospice.
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- April 22, 2015 at 4:01 pm
Hi Yasmin,
My understanding is that they can still continue to do treatement even with a brain met that is bleeding and that it doesn't necessarily mean "the end". WIth that being said, I would have the conversation with your doctor. Does he still plan on giving him the Ipi? I know with my family memeber who had Melanom, we had the conversation with the doctor that their may become a point there is a "hard stop" meaning based on the progression, the treatment would no long be beneficial. His doctor was very firm when that point came and we moved him to hospice.
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- April 23, 2015 at 6:39 am
My Mom has had 2 of 25 brain tumors with some bleeding. She was treated with gamma knife radiation not whole brain followed by ipi. She's doing fine and you'd never know that anything was ever wrong. – 1 year since last gamma knife treatment and the doctors do not see any reason she won't be around for a long time.
Concentrate on the liver and look into long term results of whole brain vs gamma knife. There is some speculation that whole brain does not "work" as long and gamma knife and gamma knife works as well.
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.
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- April 25, 2015 at 5:43 pm
I don't know the exact number of brain mets that he has, but he was assessed by a brain mets team of doctors at Princess Margaret Cancer Centre in Toronto and they said gamma knife was not possible. This could also be due to the location of the tumours, not just the number of them. At this point, the whole brain radiation has already been completed. We are just hoping that he can get back on immunotherapy asap, once his liver calms down. It's very hard to wait for this to happen…
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- April 28, 2015 at 10:55 pm
Hi Yasmin. I hope your husband is feeling better and that his liver is healing up. My sister had also finished WBRT and she is having her first ipi treatment this Friday, we are all anxious to see how it goes for her as she has reacted so poorly to the radiation she was on very strong steroids but they finished now but she still on keppra for the seizures she had before the radiation. Did your husband have ipi before his radiation
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- April 28, 2015 at 10:55 pm
Hi Yasmin. I hope your husband is feeling better and that his liver is healing up. My sister had also finished WBRT and she is having her first ipi treatment this Friday, we are all anxious to see how it goes for her as she has reacted so poorly to the radiation she was on very strong steroids but they finished now but she still on keppra for the seizures she had before the radiation. Did your husband have ipi before his radiation
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- April 28, 2015 at 10:55 pm
Hi Yasmin. I hope your husband is feeling better and that his liver is healing up. My sister had also finished WBRT and she is having her first ipi treatment this Friday, we are all anxious to see how it goes for her as she has reacted so poorly to the radiation she was on very strong steroids but they finished now but she still on keppra for the seizures she had before the radiation. Did your husband have ipi before his radiation
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- April 30, 2015 at 7:05 pm
My husband is now in hospital on IV steroids to try to reduce liver inflammation. He hasn't been able to get his 3rd dose of Ipi because of this. He had one dose of Ipi before his WBR and one dose afterwards, but now hasn't been able to continue. Good luck to your sister!
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- April 30, 2015 at 7:05 pm
My husband is now in hospital on IV steroids to try to reduce liver inflammation. He hasn't been able to get his 3rd dose of Ipi because of this. He had one dose of Ipi before his WBR and one dose afterwards, but now hasn't been able to continue. Good luck to your sister!
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- April 30, 2015 at 7:05 pm
My husband is now in hospital on IV steroids to try to reduce liver inflammation. He hasn't been able to get his 3rd dose of Ipi because of this. He had one dose of Ipi before his WBR and one dose afterwards, but now hasn't been able to continue. Good luck to your sister!
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- April 25, 2015 at 5:43 pm
I don't know the exact number of brain mets that he has, but he was assessed by a brain mets team of doctors at Princess Margaret Cancer Centre in Toronto and they said gamma knife was not possible. This could also be due to the location of the tumours, not just the number of them. At this point, the whole brain radiation has already been completed. We are just hoping that he can get back on immunotherapy asap, once his liver calms down. It's very hard to wait for this to happen…
-
- April 25, 2015 at 5:43 pm
I don't know the exact number of brain mets that he has, but he was assessed by a brain mets team of doctors at Princess Margaret Cancer Centre in Toronto and they said gamma knife was not possible. This could also be due to the location of the tumours, not just the number of them. At this point, the whole brain radiation has already been completed. We are just hoping that he can get back on immunotherapy asap, once his liver calms down. It's very hard to wait for this to happen…
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- April 23, 2015 at 6:39 am
My Mom has had 2 of 25 brain tumors with some bleeding. She was treated with gamma knife radiation not whole brain followed by ipi. She's doing fine and you'd never know that anything was ever wrong. – 1 year since last gamma knife treatment and the doctors do not see any reason she won't be around for a long time.
Concentrate on the liver and look into long term results of whole brain vs gamma knife. There is some speculation that whole brain does not "work" as long and gamma knife and gamma knife works as well.
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.
-
- April 23, 2015 at 6:39 am
My Mom has had 2 of 25 brain tumors with some bleeding. She was treated with gamma knife radiation not whole brain followed by ipi. She's doing fine and you'd never know that anything was ever wrong. – 1 year since last gamma knife treatment and the doctors do not see any reason she won't be around for a long time.
Concentrate on the liver and look into long term results of whole brain vs gamma knife. There is some speculation that whole brain does not "work" as long and gamma knife and gamma knife works as well.
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.
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