› Forums › General Melanoma Community › A few questions.
- This topic has 18 replies, 5 voices, and was last updated 13 years, 7 months ago by
LuckyMan51.
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- January 22, 2012 at 4:15 am
I've got a few random questions, if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.
1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?
I've got a few random questions, if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.
1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?
2. As of about 5 days ago, I am experiencing what seems like mild paralysis in my left hand/wrist. No pain/numbness/tingling, it's just not quick to respond. Like my fingers don't wiggle or move as usual. It's a bit clumsy I guess. I read this could be an uncommon side effect that could arrive weeks/months after the last dose. Every time I went in for a dose of yervoy a few of the numerous questions asked if I've been dropping things or have had trouble gripping. Has anyone experienced this?
3. After finding out I have three brain mets last Friday, I understand that this paralysis feeling could be something neurological, maybe there's one of the lesions is causing pressure and problems? If that's the case, has anyone experienced something similar? If that what's causing the problems and the stereotactic radiation successfully takes these guys out this week, could i expect my hand to come back to normal?
That's it for now. Thanks in advance. For anyone wondering, I have an appointment with the radiation oncologist on Tuesday to see about zapping these guys out. As for the results of my ctscan, I still don't know. I dropped off the disc last Tuesday, called twice but have yet to here back, I'm not sure if that's a good thing or bad thing. My doctor is a great guy and never seems to waste a second informing me, so I'm sure there's an explanation. Should be getting a lot of news this week, I'm a bit worried, but doing my best to stay optimistic and hoping for the best. -Kevin
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- January 22, 2012 at 4:45 am
Kevin,
Been wondering how you've been doing. When my brain met was originally discovered I also lost my ability to find words. They put me on steroids (nasty nasty) but almost immediately the words came back. I would think if your wrist problems are neurlogically caused the same would happen. From what I've been told is that brain issues are always dealt with before other issues. When the SRS actually worked and the tumor was dying I started weaning the steroids. The words stayed back…… then edema took over and issues started again. Surgery in less than 2 weeks to hopefully take care of that by removing the rest of the tumor. I hate waiting!!!!
I hope they get back to you on Monday and gets everything moving!
Wishing you the best,
Linda
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- January 22, 2012 at 4:45 am
Kevin,
Been wondering how you've been doing. When my brain met was originally discovered I also lost my ability to find words. They put me on steroids (nasty nasty) but almost immediately the words came back. I would think if your wrist problems are neurlogically caused the same would happen. From what I've been told is that brain issues are always dealt with before other issues. When the SRS actually worked and the tumor was dying I started weaning the steroids. The words stayed back…… then edema took over and issues started again. Surgery in less than 2 weeks to hopefully take care of that by removing the rest of the tumor. I hate waiting!!!!
I hope they get back to you on Monday and gets everything moving!
Wishing you the best,
Linda
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- January 22, 2012 at 4:45 am
Kevin,
Been wondering how you've been doing. When my brain met was originally discovered I also lost my ability to find words. They put me on steroids (nasty nasty) but almost immediately the words came back. I would think if your wrist problems are neurlogically caused the same would happen. From what I've been told is that brain issues are always dealt with before other issues. When the SRS actually worked and the tumor was dying I started weaning the steroids. The words stayed back…… then edema took over and issues started again. Surgery in less than 2 weeks to hopefully take care of that by removing the rest of the tumor. I hate waiting!!!!
I hope they get back to you on Monday and gets everything moving!
Wishing you the best,
Linda
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- January 23, 2012 at 10:05 am
Kevin, I wonder if the problem with your arm might be related to the Yervoy treatment
that you have just finished?From: http://www.yervoy.com/patient/side-effects/information.aspx "4. Inflammation of
the nerves that can lead to paralysis. Symptoms of nerve problems may include: unusual
weakness of legs, arms, or face".Take care
Frank from Australia
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- January 23, 2012 at 10:05 am
Kevin, I wonder if the problem with your arm might be related to the Yervoy treatment
that you have just finished?From: http://www.yervoy.com/patient/side-effects/information.aspx "4. Inflammation of
the nerves that can lead to paralysis. Symptoms of nerve problems may include: unusual
weakness of legs, arms, or face".Take care
Frank from Australia
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- January 23, 2012 at 10:05 am
Kevin, I wonder if the problem with your arm might be related to the Yervoy treatment
that you have just finished?From: http://www.yervoy.com/patient/side-effects/information.aspx "4. Inflammation of
the nerves that can lead to paralysis. Symptoms of nerve problems may include: unusual
weakness of legs, arms, or face".Take care
Frank from Australia
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- March 16, 2012 at 6:30 pm
hey, i got zapped on 1 brain met 2 days ago. wasnt bad. a bit of difficulty remembering my childrens birthdays today but away from that, which hopefully passes, no other side effects…i just got my second yervoy infusion last week and feeling a bit itchy so hopeful something is going on with that reaction. check out the paper dr jedd wolchuk from memorial sloan kettering put out on yervoy and radiosurgery combo. some interesting results. good luck.
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- March 16, 2012 at 6:30 pm
hey, i got zapped on 1 brain met 2 days ago. wasnt bad. a bit of difficulty remembering my childrens birthdays today but away from that, which hopefully passes, no other side effects…i just got my second yervoy infusion last week and feeling a bit itchy so hopeful something is going on with that reaction. check out the paper dr jedd wolchuk from memorial sloan kettering put out on yervoy and radiosurgery combo. some interesting results. good luck.
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- March 16, 2012 at 6:30 pm
hey, i got zapped on 1 brain met 2 days ago. wasnt bad. a bit of difficulty remembering my childrens birthdays today but away from that, which hopefully passes, no other side effects…i just got my second yervoy infusion last week and feeling a bit itchy so hopeful something is going on with that reaction. check out the paper dr jedd wolchuk from memorial sloan kettering put out on yervoy and radiosurgery combo. some interesting results. good luck.
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- April 6, 2012 at 5:43 pm
Kevin,
My husband has brain mets as well. One of his tumors hemorrhaged, causing swelling and a whole slew of other issues. His motor skills and memory were largely affected by the bleed in his brain but also the swelling. With therapy (physical, occupational and speech) and steroids, the swelling has gone down we have seen a large return of skills.
He has been taking steroids that have helped with the swelling. Brain issues are tricky and seem to be different for everyone. I would advise checking with your doctor.
Megan
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- April 6, 2012 at 5:43 pm
Kevin,
My husband has brain mets as well. One of his tumors hemorrhaged, causing swelling and a whole slew of other issues. His motor skills and memory were largely affected by the bleed in his brain but also the swelling. With therapy (physical, occupational and speech) and steroids, the swelling has gone down we have seen a large return of skills.
He has been taking steroids that have helped with the swelling. Brain issues are tricky and seem to be different for everyone. I would advise checking with your doctor.
Megan
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- April 6, 2012 at 5:43 pm
Kevin,
My husband has brain mets as well. One of his tumors hemorrhaged, causing swelling and a whole slew of other issues. His motor skills and memory were largely affected by the bleed in his brain but also the swelling. With therapy (physical, occupational and speech) and steroids, the swelling has gone down we have seen a large return of skills.
He has been taking steroids that have helped with the swelling. Brain issues are tricky and seem to be different for everyone. I would advise checking with your doctor.
Megan
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- April 27, 2012 at 12:47 am
Kevin.. Did u decide to go with the radio static surgery. I had it a month ago and it was a little weird but was in and out and it wasn’t a difficult procedure. I am told the probability of success from the procedure is north of 80%, Good luck whichever way you go but if you choose to go radio static/cyber knife it was a painless procedure (ex 4 screws slightly tightened around your head) with a fast recovery. -
- April 27, 2012 at 12:47 am
Kevin.. Did u decide to go with the radio static surgery. I had it a month ago and it was a little weird but was in and out and it wasn’t a difficult procedure. I am told the probability of success from the procedure is north of 80%, Good luck whichever way you go but if you choose to go radio static/cyber knife it was a painless procedure (ex 4 screws slightly tightened around your head) with a fast recovery. -
- April 27, 2012 at 12:47 am
Kevin.. Did u decide to go with the radio static surgery. I had it a month ago and it was a little weird but was in and out and it wasn’t a difficult procedure. I am told the probability of success from the procedure is north of 80%, Good luck whichever way you go but if you choose to go radio static/cyber knife it was a painless procedure (ex 4 screws slightly tightened around your head) with a fast recovery.
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