› Forums › General Melanoma Community › Stage 4 liver, bone, lung and brain mets
- This topic has 21 replies, 6 voices, and was last updated 9 years, 7 months ago by
jamieth29.
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- October 20, 2015 at 12:53 am
Dad was diagnosed stage 4 on 7/22. His only treatments thus far have been2 rounds of opdivo, which he had to stop due to liver levels. Fast forward to last tuesday he had a preforated stomach ulcer so emergency surgery was done and he recovered very fast. On saturday morning he had a seizure and ct scan ahowed 4 or 5 brain mets and blood on brain. He lost the ability to use reconizable words for about 2 days but due to meds reducing brain swelling his speech is good again. Met with a radiologist onc yoday said they could start whole radiology tomorrow. Problem is his liver is more tumor then liver and docs say he is in liver failure is very jaundice and has high ast and alt levels. On top of all this his appeal for mekintist and taflinar were approved friday late. So should we do the brain radiation and then start pd1 combo or just start pallative care. I’m lost as i sit by my diying dads icu bed side tonight.
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- October 20, 2015 at 1:39 am
You said his appeal for braf drugs was approved? If he is braf positive that is definitely something you should look at getting him on quickly. Braf drugs can work very fast and can be a bridge to get ti pd1. Have you discussed gamma knife over whole brain radiation? Not sure if gamma knife is a option for him or not. -
- October 20, 2015 at 1:39 am
You said his appeal for braf drugs was approved? If he is braf positive that is definitely something you should look at getting him on quickly. Braf drugs can work very fast and can be a bridge to get ti pd1. Have you discussed gamma knife over whole brain radiation? Not sure if gamma knife is a option for him or not. -
- October 20, 2015 at 1:39 am
You said his appeal for braf drugs was approved? If he is braf positive that is definitely something you should look at getting him on quickly. Braf drugs can work very fast and can be a bridge to get ti pd1. Have you discussed gamma knife over whole brain radiation? Not sure if gamma knife is a option for him or not.-
- October 20, 2015 at 1:51 am
Oncologist said we ahould treat brain mets before before starting braf combo. Gama knife isn’t an option as he is in thd hospital and insurance will only cover it as an oit patient procedure. I have to decied in the morning and don’ t know what to do. I am afaid his liver is too far gone. Just scared and unsure what to do as brain blees have left him unable ro make a decision. How hard would the whole bran radiation be on him? Also can liver failure be stopped if tumors shrink? -
- October 20, 2015 at 1:51 am
Oncologist said we ahould treat brain mets before before starting braf combo. Gama knife isn’t an option as he is in thd hospital and insurance will only cover it as an oit patient procedure. I have to decied in the morning and don’ t know what to do. I am afaid his liver is too far gone. Just scared and unsure what to do as brain blees have left him unable ro make a decision. How hard would the whole bran radiation be on him? Also can liver failure be stopped if tumors shrink? -
- October 20, 2015 at 1:51 am
Oncologist said we ahould treat brain mets before before starting braf combo. Gama knife isn’t an option as he is in thd hospital and insurance will only cover it as an oit patient procedure. I have to decied in the morning and don’ t know what to do. I am afaid his liver is too far gone. Just scared and unsure what to do as brain blees have left him unable ro make a decision. How hard would the whole bran radiation be on him? Also can liver failure be stopped if tumors shrink?
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- October 20, 2015 at 1:50 am
Sounds like your Dad is dealing with a lot. He obviously is. It sounds like the liver tumor is almost hurting hime more than the brain mets. I wouldn't know what to say or suggest about whether to continue treatment or switch to palliative. It does sound like the 2 key organs right now are his liver and his brain.
Forbrain mets, have his doctors talked about targeted radiation to the brain, i.e. SRS/radiosurgery)as an alternative to whole brain? My own radiation oncologist believes when possible, SRS can be more effective than whole brain, e.g., Gamma Knife or CyberKnife.
I have not experienced mets to the liver so I don't have much of a sense what kind additional treatments (e.g., ablation?) might be an option, or where to go if it's reached the point it's impacting liver function.
So I don't know but I hope he will get relief with whichever treatment paths he is able to choose.
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- October 20, 2015 at 1:50 am
Sounds like your Dad is dealing with a lot. He obviously is. It sounds like the liver tumor is almost hurting hime more than the brain mets. I wouldn't know what to say or suggest about whether to continue treatment or switch to palliative. It does sound like the 2 key organs right now are his liver and his brain.
Forbrain mets, have his doctors talked about targeted radiation to the brain, i.e. SRS/radiosurgery)as an alternative to whole brain? My own radiation oncologist believes when possible, SRS can be more effective than whole brain, e.g., Gamma Knife or CyberKnife.
I have not experienced mets to the liver so I don't have much of a sense what kind additional treatments (e.g., ablation?) might be an option, or where to go if it's reached the point it's impacting liver function.
So I don't know but I hope he will get relief with whichever treatment paths he is able to choose.
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- October 20, 2015 at 1:50 am
Sounds like your Dad is dealing with a lot. He obviously is. It sounds like the liver tumor is almost hurting hime more than the brain mets. I wouldn't know what to say or suggest about whether to continue treatment or switch to palliative. It does sound like the 2 key organs right now are his liver and his brain.
Forbrain mets, have his doctors talked about targeted radiation to the brain, i.e. SRS/radiosurgery)as an alternative to whole brain? My own radiation oncologist believes when possible, SRS can be more effective than whole brain, e.g., Gamma Knife or CyberKnife.
I have not experienced mets to the liver so I don't have much of a sense what kind additional treatments (e.g., ablation?) might be an option, or where to go if it's reached the point it's impacting liver function.
So I don't know but I hope he will get relief with whichever treatment paths he is able to choose.
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- October 20, 2015 at 4:45 am
I'm sorry you are going through this. I can't image having this come out of know where and having to make these decisions with so little notice.
If this was different I would say to take care of the brain mets first, but I think you need to get him stable first and a week or two treating something else may not make a any difference. So, I'd start by finding out where the mets are and what functions they may affect. I'd also make sure your Dad is on an anti seizure medication and any other medication to treat inflammation.
Next I would focus on the liver. Can it be resected? Would this be an option? Is using gamma knife radiation an option for treating his liver? Is he a candidate for a live liver donation if this is even possible? (You usually take immunosuppressant drugs. So this is a shot in the dark and likely NOT possible. But asking can't hurt.)
If your Dad is BRAF positive I would put him on combo temporarily with the plan of using this as long as it takes to get the liver stable then I'd go for gamma knife radiation over whole brain radiation and I would recommend starting Yerovy or another PD-1 within a very short period of time after the gamma knife radiation. Studies show that gamma knife radiation with Yervoy significantly increase the response rate for responders.
I don't know if you are working with a melanoma specialist. If you aren't you might be able get get a consult through the hospital and at the very least a second opinion very quickly for questions related to gamma knife raddiation and liver specialist. I'd ask for this to be sure that no one else would recommend something else.
Good Luck!
FYI
Here are some reports that you should read and consider when making a decision on treatment where a doctor recommends WBRT over SRS and resutls of using SRS with Yervoy:
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors. Patients with five to 10 metastatic brain tumors who receive Gamma Knife radiosurgery live as long as those with two to four tumors post-therapy
Whole Brain Radiation More Harmful Than Beneficial for Small Brain Metastases. Although WBRT decreases brain tumor progression, the accompanying decline in cognitive function outweighs the benefits for many patients, said senior study author Jan C. Buckner, MD, a professor of oncology at Mayo Clinic in Rochester, Minnesota. He said the study supports a recommendation of initial treatment with SRS alone and close monitoring to preserve cognitive function in patients with newly diagnosed brain metastases treatable with SRS.
Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.
Phase 3 trials of stereotactic radiosurgery with or without whole-brain radiation therapy for 1 to 4 brain metastases: individual patient data meta-analysis. For patients ≤50 years of age, SRS alone favored survival, in addition, the initial omission of WBRT did not impact distant brain relapse rates. SRS alone may be the preferred treatment for this age group.
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- October 20, 2015 at 4:45 am
I'm sorry you are going through this. I can't image having this come out of know where and having to make these decisions with so little notice.
If this was different I would say to take care of the brain mets first, but I think you need to get him stable first and a week or two treating something else may not make a any difference. So, I'd start by finding out where the mets are and what functions they may affect. I'd also make sure your Dad is on an anti seizure medication and any other medication to treat inflammation.
Next I would focus on the liver. Can it be resected? Would this be an option? Is using gamma knife radiation an option for treating his liver? Is he a candidate for a live liver donation if this is even possible? (You usually take immunosuppressant drugs. So this is a shot in the dark and likely NOT possible. But asking can't hurt.)
If your Dad is BRAF positive I would put him on combo temporarily with the plan of using this as long as it takes to get the liver stable then I'd go for gamma knife radiation over whole brain radiation and I would recommend starting Yerovy or another PD-1 within a very short period of time after the gamma knife radiation. Studies show that gamma knife radiation with Yervoy significantly increase the response rate for responders.
I don't know if you are working with a melanoma specialist. If you aren't you might be able get get a consult through the hospital and at the very least a second opinion very quickly for questions related to gamma knife raddiation and liver specialist. I'd ask for this to be sure that no one else would recommend something else.
Good Luck!
FYI
Here are some reports that you should read and consider when making a decision on treatment where a doctor recommends WBRT over SRS and resutls of using SRS with Yervoy:
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors. Patients with five to 10 metastatic brain tumors who receive Gamma Knife radiosurgery live as long as those with two to four tumors post-therapy
Whole Brain Radiation More Harmful Than Beneficial for Small Brain Metastases. Although WBRT decreases brain tumor progression, the accompanying decline in cognitive function outweighs the benefits for many patients, said senior study author Jan C. Buckner, MD, a professor of oncology at Mayo Clinic in Rochester, Minnesota. He said the study supports a recommendation of initial treatment with SRS alone and close monitoring to preserve cognitive function in patients with newly diagnosed brain metastases treatable with SRS.
Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.
Phase 3 trials of stereotactic radiosurgery with or without whole-brain radiation therapy for 1 to 4 brain metastases: individual patient data meta-analysis. For patients ≤50 years of age, SRS alone favored survival, in addition, the initial omission of WBRT did not impact distant brain relapse rates. SRS alone may be the preferred treatment for this age group.
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- October 20, 2015 at 4:45 am
I'm sorry you are going through this. I can't image having this come out of know where and having to make these decisions with so little notice.
If this was different I would say to take care of the brain mets first, but I think you need to get him stable first and a week or two treating something else may not make a any difference. So, I'd start by finding out where the mets are and what functions they may affect. I'd also make sure your Dad is on an anti seizure medication and any other medication to treat inflammation.
Next I would focus on the liver. Can it be resected? Would this be an option? Is using gamma knife radiation an option for treating his liver? Is he a candidate for a live liver donation if this is even possible? (You usually take immunosuppressant drugs. So this is a shot in the dark and likely NOT possible. But asking can't hurt.)
If your Dad is BRAF positive I would put him on combo temporarily with the plan of using this as long as it takes to get the liver stable then I'd go for gamma knife radiation over whole brain radiation and I would recommend starting Yerovy or another PD-1 within a very short period of time after the gamma knife radiation. Studies show that gamma knife radiation with Yervoy significantly increase the response rate for responders.
I don't know if you are working with a melanoma specialist. If you aren't you might be able get get a consult through the hospital and at the very least a second opinion very quickly for questions related to gamma knife raddiation and liver specialist. I'd ask for this to be sure that no one else would recommend something else.
Good Luck!
FYI
Here are some reports that you should read and consider when making a decision on treatment where a doctor recommends WBRT over SRS and resutls of using SRS with Yervoy:
Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors. Patients with five to 10 metastatic brain tumors who receive Gamma Knife radiosurgery live as long as those with two to four tumors post-therapy
Whole Brain Radiation More Harmful Than Beneficial for Small Brain Metastases. Although WBRT decreases brain tumor progression, the accompanying decline in cognitive function outweighs the benefits for many patients, said senior study author Jan C. Buckner, MD, a professor of oncology at Mayo Clinic in Rochester, Minnesota. He said the study supports a recommendation of initial treatment with SRS alone and close monitoring to preserve cognitive function in patients with newly diagnosed brain metastases treatable with SRS.
Ipilimumab and radiation therapy for melanoma brain metastases. Ipilimumab is associated with a significantly reduced risk of death in patients with melanoma brain metastases who underwent radiotherapy, and this finding supports the need for multimodality therapy to optimize patient outcomes.
Survival of melanoma patients with brain metastases treated with ipilimumab and stereotactic radiosurgery. Survival of patients with melanoma brain metastases treated with ipilimumab combined with SRS may be comparable to patients without brain metastases.
Phase 3 trials of stereotactic radiosurgery with or without whole-brain radiation therapy for 1 to 4 brain metastases: individual patient data meta-analysis. For patients ≤50 years of age, SRS alone favored survival, in addition, the initial omission of WBRT did not impact distant brain relapse rates. SRS alone may be the preferred treatment for this age group.
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- October 20, 2015 at 3:12 pm
Wow. The liver issue that's already jaundice is extremely serious. That's what got my cousins son after his 30 month fight. It happened very sudden and the end came in a couple weeks. 2 years before that they did radioactive pellets on the liver which saved him from that for a long time. Maybe they can do that for your dad.
It sounds like the brain with the meds is stable again. Maybe they can do the braf combo with the liver thing or something for the liver to get him better again. Then do gamma knife to the brain. Just a thought.
Good luck to you in this very hard time.
Artie
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- October 20, 2015 at 3:12 pm
Wow. The liver issue that's already jaundice is extremely serious. That's what got my cousins son after his 30 month fight. It happened very sudden and the end came in a couple weeks. 2 years before that they did radioactive pellets on the liver which saved him from that for a long time. Maybe they can do that for your dad.
It sounds like the brain with the meds is stable again. Maybe they can do the braf combo with the liver thing or something for the liver to get him better again. Then do gamma knife to the brain. Just a thought.
Good luck to you in this very hard time.
Artie
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- October 20, 2015 at 3:12 pm
Wow. The liver issue that's already jaundice is extremely serious. That's what got my cousins son after his 30 month fight. It happened very sudden and the end came in a couple weeks. 2 years before that they did radioactive pellets on the liver which saved him from that for a long time. Maybe they can do that for your dad.
It sounds like the brain with the meds is stable again. Maybe they can do the braf combo with the liver thing or something for the liver to get him better again. Then do gamma knife to the brain. Just a thought.
Good luck to you in this very hard time.
Artie
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