› Forums › General Melanoma Community › Yervoy & Cyberknife Side Effects? Help…
- This topic has 30 replies, 6 voices, and was last updated 9 years, 7 months ago by arthurjedi007.
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- September 30, 2014 at 6:04 pm
Hi everyone,
Please read prior posts for history of the patient…
Need a little advice, really confused and in the dark. Best friend had cyberknife sometime in early August… Started Yervoy August 14th. Only on 2nd treatment now. Her condition has declined 110%.
At first, she was tired… Still allowed visitors, communicated via text & answered phone calls. Then the texts got jumbled, didn't make sense. Then those stopped. Now, she can no longer walk or talk on most days.
About a week and a half ago, she went the doctors (for declining health) they advised that she might still have swelling in her brain. They put her back on steroids. She ended up in the hospital last night, dehydration plus she was not able to talk at all, could not get up out of bed.
They kept her overnight for MRI's, once last night & scheduled another one this morning (not sure why 2 MRI's would be needed).
Is this a normal reaction to Yervoy? Is this a sign that she is not responding to the drug?
I hear of people continuing to work while doing this treatment… Why is her body/mind just shutting down?
Any insight would be incredibly helpful…
Thank you!
Amanda
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- September 30, 2014 at 8:21 pm
No this is not normal for ipi in my opinion. As far as response to ipi that is difficult to say. As far as 2 MRI's for those of us that have been battered by this disease and treatments they can be difficult. After just part of an MRI when they are at a place they can stop they let me out so I can walk around a few minutes so my spine does not spasm on me and I end up in the emergency room again. An MRI is only of a certain area. I imagine they probably did one of her head. I'm not sure where the other one will be.
I imagine most of her issues are from the disease and possibly lack of nutrition. I'm so sorry and am just speculating but that seems like what is happening. I suppose it could be a reaction to ipi. Some people have had very serious life threating reactions but I've never heard of one like this. The MRI should hopefully show what is going on. I know she had radiation for the brain in August so hopefully that is not the issue.
Since she was dehydrated I suspect she isn't getting the proper nutrition to get her strength back. For a disease like this when in bad health in my opinion it is critical to have a 24 hour help giver. My parents moved in with me at the beginning of this over 15 months ago. I would not still be here if it wasn't for them. Especially critical is eatting. Many times I could not have fixed it myself. Heck sometimes it would take 10 minutes just to eat half a bite. I would stick to it for hours. I hope she has someone. She might even refuse someone but if so she just doesn't want to be a bother but she really needs someone and would probably appreciate it when she gets better.
Sorry but in my opinion she needs immediate taking care of. A soup she likes is a good start of getting her strength up.
I wish I had something better to say. I wish I could just reach out and touch a person and this disease would go away. Sorry I couldn't be more helpful.
Artie
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- September 30, 2014 at 8:21 pm
No this is not normal for ipi in my opinion. As far as response to ipi that is difficult to say. As far as 2 MRI's for those of us that have been battered by this disease and treatments they can be difficult. After just part of an MRI when they are at a place they can stop they let me out so I can walk around a few minutes so my spine does not spasm on me and I end up in the emergency room again. An MRI is only of a certain area. I imagine they probably did one of her head. I'm not sure where the other one will be.
I imagine most of her issues are from the disease and possibly lack of nutrition. I'm so sorry and am just speculating but that seems like what is happening. I suppose it could be a reaction to ipi. Some people have had very serious life threating reactions but I've never heard of one like this. The MRI should hopefully show what is going on. I know she had radiation for the brain in August so hopefully that is not the issue.
Since she was dehydrated I suspect she isn't getting the proper nutrition to get her strength back. For a disease like this when in bad health in my opinion it is critical to have a 24 hour help giver. My parents moved in with me at the beginning of this over 15 months ago. I would not still be here if it wasn't for them. Especially critical is eatting. Many times I could not have fixed it myself. Heck sometimes it would take 10 minutes just to eat half a bite. I would stick to it for hours. I hope she has someone. She might even refuse someone but if so she just doesn't want to be a bother but she really needs someone and would probably appreciate it when she gets better.
Sorry but in my opinion she needs immediate taking care of. A soup she likes is a good start of getting her strength up.
I wish I had something better to say. I wish I could just reach out and touch a person and this disease would go away. Sorry I couldn't be more helpful.
Artie
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- September 30, 2014 at 8:50 pm
Thanks for your response Artie. This is unfortunatley what I have suspected for a while now. Sometimes it seems like taking care of a loved one in this situation seems unmanageable. Not enough experience, or not being able to push a little harder when neccessary. She is the shell of the person she once was… I still hold out hope that she will recover, that everyone with this disease will recover…
Thanks again,
Amanda
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- September 30, 2014 at 8:50 pm
Thanks for your response Artie. This is unfortunatley what I have suspected for a while now. Sometimes it seems like taking care of a loved one in this situation seems unmanageable. Not enough experience, or not being able to push a little harder when neccessary. She is the shell of the person she once was… I still hold out hope that she will recover, that everyone with this disease will recover…
Thanks again,
Amanda
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- September 30, 2014 at 8:50 pm
Thanks for your response Artie. This is unfortunatley what I have suspected for a while now. Sometimes it seems like taking care of a loved one in this situation seems unmanageable. Not enough experience, or not being able to push a little harder when neccessary. She is the shell of the person she once was… I still hold out hope that she will recover, that everyone with this disease will recover…
Thanks again,
Amanda
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- September 30, 2014 at 8:21 pm
No this is not normal for ipi in my opinion. As far as response to ipi that is difficult to say. As far as 2 MRI's for those of us that have been battered by this disease and treatments they can be difficult. After just part of an MRI when they are at a place they can stop they let me out so I can walk around a few minutes so my spine does not spasm on me and I end up in the emergency room again. An MRI is only of a certain area. I imagine they probably did one of her head. I'm not sure where the other one will be.
I imagine most of her issues are from the disease and possibly lack of nutrition. I'm so sorry and am just speculating but that seems like what is happening. I suppose it could be a reaction to ipi. Some people have had very serious life threating reactions but I've never heard of one like this. The MRI should hopefully show what is going on. I know she had radiation for the brain in August so hopefully that is not the issue.
Since she was dehydrated I suspect she isn't getting the proper nutrition to get her strength back. For a disease like this when in bad health in my opinion it is critical to have a 24 hour help giver. My parents moved in with me at the beginning of this over 15 months ago. I would not still be here if it wasn't for them. Especially critical is eatting. Many times I could not have fixed it myself. Heck sometimes it would take 10 minutes just to eat half a bite. I would stick to it for hours. I hope she has someone. She might even refuse someone but if so she just doesn't want to be a bother but she really needs someone and would probably appreciate it when she gets better.
Sorry but in my opinion she needs immediate taking care of. A soup she likes is a good start of getting her strength up.
I wish I had something better to say. I wish I could just reach out and touch a person and this disease would go away. Sorry I couldn't be more helpful.
Artie
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- October 1, 2014 at 1:57 am
Amanda,
I'm sorry to hear she's being hit so hard by this right now.
Jumbled text, inability to speak and other difficulties might, or might not, be neurological in nature. Especially with a recent diagnosis and treatment for brain mets. It doesn't sound like a typical Yervoy side effect, but having recent brain issues and treatment probably makes her situation not typical in any case. There are so many areas of the brain doing so many different functions that it's probably hard to compare one person's situation getting treatments in the brain to another's.
I started Yervoy 2 weeks after Gamma Knife treatment to four areas in my brain, so getting Yervoy close on the heels of radiation treatment is probably not unusual.
A possible explanation for a second MRI is that they decided to run a special MRI study. My doctors once did a special 'perfusion' study on 2 areas of my brain, after those areas showed up as probably growing again on a normal MRI. Perfusion let them better examine whether there was any new blood vessel present in the new growth (which might indicate or confirm new tumor growth). In my case the studies helped them asssess that the swelling they were seeing was probably 'radiation effect' rather than new tumor growth. They might be doing some kind of special study in the second MRI.
I hope she starts feeling better again soon. I wish her all the best.
– Kyle
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- October 1, 2014 at 1:57 am
Amanda,
I'm sorry to hear she's being hit so hard by this right now.
Jumbled text, inability to speak and other difficulties might, or might not, be neurological in nature. Especially with a recent diagnosis and treatment for brain mets. It doesn't sound like a typical Yervoy side effect, but having recent brain issues and treatment probably makes her situation not typical in any case. There are so many areas of the brain doing so many different functions that it's probably hard to compare one person's situation getting treatments in the brain to another's.
I started Yervoy 2 weeks after Gamma Knife treatment to four areas in my brain, so getting Yervoy close on the heels of radiation treatment is probably not unusual.
A possible explanation for a second MRI is that they decided to run a special MRI study. My doctors once did a special 'perfusion' study on 2 areas of my brain, after those areas showed up as probably growing again on a normal MRI. Perfusion let them better examine whether there was any new blood vessel present in the new growth (which might indicate or confirm new tumor growth). In my case the studies helped them asssess that the swelling they were seeing was probably 'radiation effect' rather than new tumor growth. They might be doing some kind of special study in the second MRI.
I hope she starts feeling better again soon. I wish her all the best.
– Kyle
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- October 1, 2014 at 1:57 am
Amanda,
I'm sorry to hear she's being hit so hard by this right now.
Jumbled text, inability to speak and other difficulties might, or might not, be neurological in nature. Especially with a recent diagnosis and treatment for brain mets. It doesn't sound like a typical Yervoy side effect, but having recent brain issues and treatment probably makes her situation not typical in any case. There are so many areas of the brain doing so many different functions that it's probably hard to compare one person's situation getting treatments in the brain to another's.
I started Yervoy 2 weeks after Gamma Knife treatment to four areas in my brain, so getting Yervoy close on the heels of radiation treatment is probably not unusual.
A possible explanation for a second MRI is that they decided to run a special MRI study. My doctors once did a special 'perfusion' study on 2 areas of my brain, after those areas showed up as probably growing again on a normal MRI. Perfusion let them better examine whether there was any new blood vessel present in the new growth (which might indicate or confirm new tumor growth). In my case the studies helped them asssess that the swelling they were seeing was probably 'radiation effect' rather than new tumor growth. They might be doing some kind of special study in the second MRI.
I hope she starts feeling better again soon. I wish her all the best.
– Kyle
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- October 1, 2014 at 11:04 am
Ay some point gamma knife radiation my Mom was prescribed keppra of 1000mg 2x per day. The side effects were confusion, uncordination, extreme sleepiness and mood issues. Her side effects resolved when they gave het the dose at night only.Could be that some of this is a side effect of the cyber knife and/or keppra…
A friend has had a declining mental state over the last 3 years. There were MRIs, blood tests, neuropsych tests… All negative. Turned out it was caused by 2 blood pressure medications. He has only been off them a short time, but all signs point to these issues being caused by the drugs and nothing else.
Sounds like someone needs to manage day to day care too.
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- October 1, 2014 at 11:04 am
Ay some point gamma knife radiation my Mom was prescribed keppra of 1000mg 2x per day. The side effects were confusion, uncordination, extreme sleepiness and mood issues. Her side effects resolved when they gave het the dose at night only.Could be that some of this is a side effect of the cyber knife and/or keppra…
A friend has had a declining mental state over the last 3 years. There were MRIs, blood tests, neuropsych tests… All negative. Turned out it was caused by 2 blood pressure medications. He has only been off them a short time, but all signs point to these issues being caused by the drugs and nothing else.
Sounds like someone needs to manage day to day care too.
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- October 1, 2014 at 11:04 am
Ay some point gamma knife radiation my Mom was prescribed keppra of 1000mg 2x per day. The side effects were confusion, uncordination, extreme sleepiness and mood issues. Her side effects resolved when they gave het the dose at night only.Could be that some of this is a side effect of the cyber knife and/or keppra…
A friend has had a declining mental state over the last 3 years. There were MRIs, blood tests, neuropsych tests… All negative. Turned out it was caused by 2 blood pressure medications. He has only been off them a short time, but all signs point to these issues being caused by the drugs and nothing else.
Sounds like someone needs to manage day to day care too.
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- October 1, 2014 at 1:51 pm
Hi Amanda, I was thinking about your post and I remember something that the Neural Surgeon said to me last Oct. about side effects of cyberknife. There is a chance that it will cause swelling that might lead to seizures, loss of balance , loss of memory, loss of motor control. If you look up cyberknife or gamaknife on line and look at the possible side effects, the list is pretty long. The surgeon also said that these side effects could happen up to 6months after the treatment. My tumors were small about 3 to 4mm in size and there were 3 of them. I have been very lucky with no real side effects. I try to use the treatment as an excuse to get out of doing dishes but my wife is not buying it!!!!! The location of the tumors are also something to take into account. If they are in the motor cortex vs say visual cortex, could effect possible side effects. I hope this was helpful Amanda. I wish your friend the best!!!! Ed
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- October 1, 2014 at 1:51 pm
Hi Amanda, I was thinking about your post and I remember something that the Neural Surgeon said to me last Oct. about side effects of cyberknife. There is a chance that it will cause swelling that might lead to seizures, loss of balance , loss of memory, loss of motor control. If you look up cyberknife or gamaknife on line and look at the possible side effects, the list is pretty long. The surgeon also said that these side effects could happen up to 6months after the treatment. My tumors were small about 3 to 4mm in size and there were 3 of them. I have been very lucky with no real side effects. I try to use the treatment as an excuse to get out of doing dishes but my wife is not buying it!!!!! The location of the tumors are also something to take into account. If they are in the motor cortex vs say visual cortex, could effect possible side effects. I hope this was helpful Amanda. I wish your friend the best!!!! Ed
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- October 1, 2014 at 1:51 pm
Hi Amanda, I was thinking about your post and I remember something that the Neural Surgeon said to me last Oct. about side effects of cyberknife. There is a chance that it will cause swelling that might lead to seizures, loss of balance , loss of memory, loss of motor control. If you look up cyberknife or gamaknife on line and look at the possible side effects, the list is pretty long. The surgeon also said that these side effects could happen up to 6months after the treatment. My tumors were small about 3 to 4mm in size and there were 3 of them. I have been very lucky with no real side effects. I try to use the treatment as an excuse to get out of doing dishes but my wife is not buying it!!!!! The location of the tumors are also something to take into account. If they are in the motor cortex vs say visual cortex, could effect possible side effects. I hope this was helpful Amanda. I wish your friend the best!!!! Ed
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- October 1, 2014 at 11:09 pm
Just heard the doc's are doing another 10 days of radiation on her brain… I'm guessing this is not a good sign? They are keeping her in the hospital while doing the radiation. Any thoughts?
Thanks
~Amanda
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- October 2, 2014 at 3:58 pm
Radiation is hard enough when I'm relatively strong. Like I was fine walking 2 miles a day. But since the radiation that ended almost 2 weeks ago I'm still only back up to less than half that. She really needs to get her strength up to get through the radiation. I imagine they must have seen something in the MRI in her brain causing a lot of her issues. But her weakness is a big concern. She's gotta get some nutrition and constant attention to get her strength up. Physical strength is a must especially with that much radiation especially after having it so soon after having it in August. Mental strength of course is critical as well. She has to be psyched up to take control and beat this disease down. I imagine they are keeping her in the hospital so they can monitor her vitals and try to keep her alive as she goes through the radiation because they know she is too weak to properly do it but the disease is too aggressive so they know they have to do the radiation. Even if she was strong she would be in a scary rough position but being so weak … well she really needs special help. Sorry to not sound positive and it's just my opinion but that is my thoughts.
Artie
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- October 2, 2014 at 3:58 pm
Radiation is hard enough when I'm relatively strong. Like I was fine walking 2 miles a day. But since the radiation that ended almost 2 weeks ago I'm still only back up to less than half that. She really needs to get her strength up to get through the radiation. I imagine they must have seen something in the MRI in her brain causing a lot of her issues. But her weakness is a big concern. She's gotta get some nutrition and constant attention to get her strength up. Physical strength is a must especially with that much radiation especially after having it so soon after having it in August. Mental strength of course is critical as well. She has to be psyched up to take control and beat this disease down. I imagine they are keeping her in the hospital so they can monitor her vitals and try to keep her alive as she goes through the radiation because they know she is too weak to properly do it but the disease is too aggressive so they know they have to do the radiation. Even if she was strong she would be in a scary rough position but being so weak … well she really needs special help. Sorry to not sound positive and it's just my opinion but that is my thoughts.
Artie
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- October 2, 2014 at 3:58 pm
Radiation is hard enough when I'm relatively strong. Like I was fine walking 2 miles a day. But since the radiation that ended almost 2 weeks ago I'm still only back up to less than half that. She really needs to get her strength up to get through the radiation. I imagine they must have seen something in the MRI in her brain causing a lot of her issues. But her weakness is a big concern. She's gotta get some nutrition and constant attention to get her strength up. Physical strength is a must especially with that much radiation especially after having it so soon after having it in August. Mental strength of course is critical as well. She has to be psyched up to take control and beat this disease down. I imagine they are keeping her in the hospital so they can monitor her vitals and try to keep her alive as she goes through the radiation because they know she is too weak to properly do it but the disease is too aggressive so they know they have to do the radiation. Even if she was strong she would be in a scary rough position but being so weak … well she really needs special help. Sorry to not sound positive and it's just my opinion but that is my thoughts.
Artie
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- October 1, 2014 at 11:13 pm
I was also under the impression you cannot radiate the brain again?
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