› Forums › General Melanoma Community › question about Brain Melanoma affecting my father and Yervoy treatments
- This topic has 36 replies, 7 voices, and was last updated 10 years, 6 months ago by
charlesthomas.
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- October 11, 2013 at 1:40 am
My father was Diagnosed with Brain Melanoma a little over 6 weeks ago. He has gone down hill drasticly. before he was diagnosed he was walking a mile a day and reading complicated ancient greek books and philosophy. He is 83 btw. He had 1 treatment so far but he is really sliding fast. he has 4 large masses in his brain, 2 in the front 2 in the back and they have been growing even more and caused bleeding. It has affected his motor skills to where he has basically become wheel chair bound and has a hard time speaking. It is almost like he knows what he wants to say but it wont spit out. His memory has been affected and now it seems he is having problems swallowing so he has been put on a puree diet. Will Yervoy have really any affect with someone who is 83 years old? our Oncologist says he is dying and does not see any point to using Yervoy. I just do not know what to do really. I dont know if we need to start working to an end of life care situation where we just make him as comfortable as possible, or keep working on it keep seeing him still deteriorate. It is sad seeing him like this. I can see the sadness almost in his eyes at times. He is a mere shell of what he use to be. he has a problem even answering or proscessing simple questions now. I am just at a loss. I do not knokw what to do. We do not have the means to care for him at home because it is just too much for us and our house is not set up for this. While he is on yervoy treatments from what I understand because it is outpatient he has to be at home and we can not even keep him at the nursing facility while he goes through treatment I dont think. What options do I have? how can we take care of him while we continue on the Yervoy assuming the Yervoy is even viable. He needs basically 24 hour care at this point. Just from my point of view I almost see the tumors being to far entrenched for any help at his age. My Mother and I are just feeling so confused and helpless. on one hand we want to keep treatment if it will work, but on the other hand if he is so far off that the yervoy really wont do much, we do not want to extend his unfomfortableness any further, and just make him as comfortable as possible till he slips away.
-Confused and scared.
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- October 11, 2013 at 1:46 am
Let me clarify, from what I understand because Yervoy is out patient we cant even keep him at the nursing facility that is right down the street from us where he was getting therapy. He was able to get in there because he had the first treatment in the hospital out patient facility. The Hospital Discharged him that day to the lower out patient ward then gave him the treatment as an out patient. But I dont see how we can keep him in the nursing facility because it would mean discharging him everytime he gets a treatment and then having to re admit him I think. Heck I was just told that he had to be dicharged before his second treatment.
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- October 11, 2013 at 1:46 am
Let me clarify, from what I understand because Yervoy is out patient we cant even keep him at the nursing facility that is right down the street from us where he was getting therapy. He was able to get in there because he had the first treatment in the hospital out patient facility. The Hospital Discharged him that day to the lower out patient ward then gave him the treatment as an out patient. But I dont see how we can keep him in the nursing facility because it would mean discharging him everytime he gets a treatment and then having to re admit him I think. Heck I was just told that he had to be dicharged before his second treatment.
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- October 12, 2013 at 11:27 am
Brain mets are almost always treated with surgery (a craniotomy) and/or radiation (SRS, gamma knife or while brain radiation). On occassion doctors may try Temador or Zelboraf (only for BRaf + patients). Please make sure you are seeing a melanoma specialist! The side effects of Yervoy can be deadly of not treated correctly. -
- October 12, 2013 at 11:27 am
Brain mets are almost always treated with surgery (a craniotomy) and/or radiation (SRS, gamma knife or while brain radiation). On occassion doctors may try Temador or Zelboraf (only for BRaf + patients). Please make sure you are seeing a melanoma specialist! The side effects of Yervoy can be deadly of not treated correctly. -
- October 12, 2013 at 11:27 am
Brain mets are almost always treated with surgery (a craniotomy) and/or radiation (SRS, gamma knife or while brain radiation). On occassion doctors may try Temador or Zelboraf (only for BRaf + patients). Please make sure you are seeing a melanoma specialist! The side effects of Yervoy can be deadly of not treated correctly.
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- October 11, 2013 at 1:46 am
Let me clarify, from what I understand because Yervoy is out patient we cant even keep him at the nursing facility that is right down the street from us where he was getting therapy. He was able to get in there because he had the first treatment in the hospital out patient facility. The Hospital Discharged him that day to the lower out patient ward then gave him the treatment as an out patient. But I dont see how we can keep him in the nursing facility because it would mean discharging him everytime he gets a treatment and then having to re admit him I think. Heck I was just told that he had to be dicharged before his second treatment.
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- October 11, 2013 at 1:59 am
I'm not quite sure what to say. This is very sad and my heart and prayers go out to you & your family. I personally can't say if Yervoy will have affect or not. It sounds like he has had one infusion already…correct? I always want to say never give up but I can only empathize with your situation, seeing a loved one affected like this is gut wrenching. Many of know the desperate feelings you're having…difficult choices. I'm sorry for your situation and wish you peace and God's blessings as you work through this.
Josh
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- October 11, 2013 at 2:05 am
yes he has only had one infusion. Everything for us right now is unraveling. it is just so demoralizing because we have no way to care for him at home, the doc says the yervoy wont make a difference, we thought he was getting better, and he then suddenly took a turn for the worse. It is just so disheartning. I want to do all that I can, but I also dont want to put him through living basically like an invilid because that is for the most part how he is now. I want him better, It is just so hard to through the fog of confusion and being scared and not know what to do or how to handle this.
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- October 11, 2013 at 2:05 am
yes he has only had one infusion. Everything for us right now is unraveling. it is just so demoralizing because we have no way to care for him at home, the doc says the yervoy wont make a difference, we thought he was getting better, and he then suddenly took a turn for the worse. It is just so disheartning. I want to do all that I can, but I also dont want to put him through living basically like an invilid because that is for the most part how he is now. I want him better, It is just so hard to through the fog of confusion and being scared and not know what to do or how to handle this.
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- October 11, 2013 at 2:05 am
yes he has only had one infusion. Everything for us right now is unraveling. it is just so demoralizing because we have no way to care for him at home, the doc says the yervoy wont make a difference, we thought he was getting better, and he then suddenly took a turn for the worse. It is just so disheartning. I want to do all that I can, but I also dont want to put him through living basically like an invilid because that is for the most part how he is now. I want him better, It is just so hard to through the fog of confusion and being scared and not know what to do or how to handle this.
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- October 12, 2013 at 4:02 pm
Using surgery, radiation and immunotherapy (Yervoy)! my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don’t know if at some point they would have told me that there was nothing more they could do for me. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it’s very big, but to a neurosurgeon that might or might not be considered massive.I know a big uncertainty is hanging over you. Does your father have docs that he and you trust? If you’re not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help you know if what you’re hearing is trustworthy. Hopefully they would pull in neurosurgeon, radiation oncologist and melanoma specialist to make their recommendation.
Unfortunatelu it’s not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. I had some that were inoperable due to location but still small enough to GammaKnife. Yervoy apparently takes a long time to kick in for those that benefit from it.
Things may or may not be that way, I don’t know if any of us could have a good handle on thatsay. I know you are figuring out how do do what is best for your Dad. I hope you you are able to do that, as you try to get as much relief as is possible for your Dad whichever way that comes out.
Best wishes,
Kyke -
- October 12, 2013 at 4:02 pm
Using surgery, radiation and immunotherapy (Yervoy)! my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don’t know if at some point they would have told me that there was nothing more they could do for me. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it’s very big, but to a neurosurgeon that might or might not be considered massive.I know a big uncertainty is hanging over you. Does your father have docs that he and you trust? If you’re not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help you know if what you’re hearing is trustworthy. Hopefully they would pull in neurosurgeon, radiation oncologist and melanoma specialist to make their recommendation.
Unfortunatelu it’s not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. I had some that were inoperable due to location but still small enough to GammaKnife. Yervoy apparently takes a long time to kick in for those that benefit from it.
Things may or may not be that way, I don’t know if any of us could have a good handle on thatsay. I know you are figuring out how do do what is best for your Dad. I hope you you are able to do that, as you try to get as much relief as is possible for your Dad whichever way that comes out.
Best wishes,
Kyke -
- October 12, 2013 at 4:02 pm
Using surgery, radiation and immunotherapy (Yervoy)! my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don’t know if at some point they would have told me that there was nothing more they could do for me. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it’s very big, but to a neurosurgeon that might or might not be considered massive.I know a big uncertainty is hanging over you. Does your father have docs that he and you trust? If you’re not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help you know if what you’re hearing is trustworthy. Hopefully they would pull in neurosurgeon, radiation oncologist and melanoma specialist to make their recommendation.
Unfortunatelu it’s not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. I had some that were inoperable due to location but still small enough to GammaKnife. Yervoy apparently takes a long time to kick in for those that benefit from it.
Things may or may not be that way, I don’t know if any of us could have a good handle on thatsay. I know you are figuring out how do do what is best for your Dad. I hope you you are able to do that, as you try to get as much relief as is possible for your Dad whichever way that comes out.
Best wishes,
Kyke -
- October 12, 2013 at 6:08 pm
mark74okc,
You're obviously going through a hard time. I apologize for my garbled reply. Here's what I meant to say, for you and your Dad.
Using surgery, radiation and immunotherapy (Yervoy, like your Dad is getting) my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don't know if at some point they would have told me that there was nothing more they could do. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it's very big, but to a neurosurgeon that might or might not be considered massive.Does your father have docs that he and you trust? That could be one part of the uncertainty hanging on you. If you're not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help. Ideally that consult would pull in neurosurgeon, radiation oncologist and melanoma specialist to review what your Dad's current doc is telling you, and to make their recommendation either the same or different.It's not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. Those aren't necessarily all of the factors under consideration, but it's probably some.I don't know if any of us could have a good handle on your Dad's treatment. I think that has to be a panel that ideally includes a melanoma specialist, a nuerosurgeon and a radiation oncologist.I know you are figuring out how do do what is best for your Dad, as you try to get as much relief as is possible for your Dad whichever way that comes out. I hope that helps you find relief for your Dad, either through continued treatment or palliative measures. I can't imagine what you're going through.Best,Kyle -
- October 12, 2013 at 6:08 pm
mark74okc,
You're obviously going through a hard time. I apologize for my garbled reply. Here's what I meant to say, for you and your Dad.
Using surgery, radiation and immunotherapy (Yervoy, like your Dad is getting) my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don't know if at some point they would have told me that there was nothing more they could do. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it's very big, but to a neurosurgeon that might or might not be considered massive.Does your father have docs that he and you trust? That could be one part of the uncertainty hanging on you. If you're not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help. Ideally that consult would pull in neurosurgeon, radiation oncologist and melanoma specialist to review what your Dad's current doc is telling you, and to make their recommendation either the same or different.It's not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. Those aren't necessarily all of the factors under consideration, but it's probably some.I don't know if any of us could have a good handle on your Dad's treatment. I think that has to be a panel that ideally includes a melanoma specialist, a nuerosurgeon and a radiation oncologist.I know you are figuring out how do do what is best for your Dad, as you try to get as much relief as is possible for your Dad whichever way that comes out. I hope that helps you find relief for your Dad, either through continued treatment or palliative measures. I can't imagine what you're going through.Best,Kyle -
- October 12, 2013 at 6:08 pm
mark74okc,
You're obviously going through a hard time. I apologize for my garbled reply. Here's what I meant to say, for you and your Dad.
Using surgery, radiation and immunotherapy (Yervoy, like your Dad is getting) my doctors got my brain mets under control and stable for awhile now. If the sizes and locations were different I don't know if at some point they would have told me that there was nothing more they could do. The biggest one they treated was 3.5 cm in one dimension. To me that seems like it's very big, but to a neurosurgeon that might or might not be considered massive.Does your father have docs that he and you trust? That could be one part of the uncertainty hanging on you. If you're not sure, getting his scans on a CD-ROM and taking them to another facility that possibly inspires your trust for a second opinion would probably help. Ideally that consult would pull in neurosurgeon, radiation oncologist and melanoma specialist to review what your Dad's current doc is telling you, and to make their recommendation either the same or different.It's not inconceivable that their recommendation might not come out either way. Size of the tumors is important because targetted radiation like GammaKnife or CyberKnife can only treat up to a certain total tumor volume. Location of tumors is important because some locations may be inoperable. Those aren't necessarily all of the factors under consideration, but it's probably some.I don't know if any of us could have a good handle on your Dad's treatment. I think that has to be a panel that ideally includes a melanoma specialist, a nuerosurgeon and a radiation oncologist.I know you are figuring out how do do what is best for your Dad, as you try to get as much relief as is possible for your Dad whichever way that comes out. I hope that helps you find relief for your Dad, either through continued treatment or palliative measures. I can't imagine what you're going through.Best,Kyle
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- October 11, 2013 at 1:59 am
I'm not quite sure what to say. This is very sad and my heart and prayers go out to you & your family. I personally can't say if Yervoy will have affect or not. It sounds like he has had one infusion already…correct? I always want to say never give up but I can only empathize with your situation, seeing a loved one affected like this is gut wrenching. Many of know the desperate feelings you're having…difficult choices. I'm sorry for your situation and wish you peace and God's blessings as you work through this.
Josh
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- October 11, 2013 at 1:59 am
I'm not quite sure what to say. This is very sad and my heart and prayers go out to you & your family. I personally can't say if Yervoy will have affect or not. It sounds like he has had one infusion already…correct? I always want to say never give up but I can only empathize with your situation, seeing a loved one affected like this is gut wrenching. Many of know the desperate feelings you're having…difficult choices. I'm sorry for your situation and wish you peace and God's blessings as you work through this.
Josh
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- October 12, 2013 at 5:10 am
What a difficult situation. Talk to the doctors. Talk to your mom and your father if possible and then make a decision. It's obvious how much you love your father. Whatever you decide will be the right choice. I am praying for you and your family.
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- October 12, 2013 at 5:10 am
What a difficult situation. Talk to the doctors. Talk to your mom and your father if possible and then make a decision. It's obvious how much you love your father. Whatever you decide will be the right choice. I am praying for you and your family.
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- October 12, 2013 at 5:06 pm
Just to reiterate what others are saying, please consider getting a second opinion. Yervoy takes a while to work and is not recommended for patients with fast growing tumors. My husband also has fast growing brain mets and deteriorated rapidly following his first dose of Yervoy. His oncologists decided he didn't have time for the Yervoy to work and switched him back to a targeted chemo (braf inhibitor–dabrafinib). I assume your fathers oncologist has tested him for the braf mutation, but if not, please do so immediately. The B-raf inhibitors can provide immediate relief and work on brain tumors. This is not a permanent solution, but can work for several months and has minimal side effects. Alternatively, radiation or surgery are excellent options, particularly if there are limited tumor numbers. Moreover, radiation can be done in parallel w/ Yervoy.
Best Wishes!
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- October 12, 2013 at 5:06 pm
Just to reiterate what others are saying, please consider getting a second opinion. Yervoy takes a while to work and is not recommended for patients with fast growing tumors. My husband also has fast growing brain mets and deteriorated rapidly following his first dose of Yervoy. His oncologists decided he didn't have time for the Yervoy to work and switched him back to a targeted chemo (braf inhibitor–dabrafinib). I assume your fathers oncologist has tested him for the braf mutation, but if not, please do so immediately. The B-raf inhibitors can provide immediate relief and work on brain tumors. This is not a permanent solution, but can work for several months and has minimal side effects. Alternatively, radiation or surgery are excellent options, particularly if there are limited tumor numbers. Moreover, radiation can be done in parallel w/ Yervoy.
Best Wishes!
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- October 12, 2013 at 5:06 pm
Just to reiterate what others are saying, please consider getting a second opinion. Yervoy takes a while to work and is not recommended for patients with fast growing tumors. My husband also has fast growing brain mets and deteriorated rapidly following his first dose of Yervoy. His oncologists decided he didn't have time for the Yervoy to work and switched him back to a targeted chemo (braf inhibitor–dabrafinib). I assume your fathers oncologist has tested him for the braf mutation, but if not, please do so immediately. The B-raf inhibitors can provide immediate relief and work on brain tumors. This is not a permanent solution, but can work for several months and has minimal side effects. Alternatively, radiation or surgery are excellent options, particularly if there are limited tumor numbers. Moreover, radiation can be done in parallel w/ Yervoy.
Best Wishes!
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- October 12, 2013 at 5:10 am
What a difficult situation. Talk to the doctors. Talk to your mom and your father if possible and then make a decision. It's obvious how much you love your father. Whatever you decide will be the right choice. I am praying for you and your family.
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- October 22, 2013 at 3:16 pm
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- October 22, 2013 at 3:16 pm
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- October 22, 2013 at 3:16 pm
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