Yervoy & Cyberknife Side Effects? Help…

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

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

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

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

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

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

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.

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.

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.

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

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

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