› Forums › General Melanoma Community › Anybody have info on brain met recurrence post yervoy and radio static/gamma knife surgery
- This topic has 24 replies, 7 voices, and was last updated 11 years, 3 months ago by
LuckyMan51.
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- February 6, 2013 at 11:50 pm
I finished up 4 Yervoy infusions in April 2012 following radio-static surgery to zap a brain met in March Saw steady shrinkage and was declared NED by Dr on 8/14. Next two brain and body scans were clear. Saw neurosurgeon yesterday for brain scan and consult. The fried tumor spot had a strange look. Looked like the dried up tumor grain was still there, not necessarily larger but had a dime sized circle of liquid around the spot. I had heard that people sometimes see shrinkage followed by some slight growth before seeing shrinkage again. Anybody have any thoughts or experience on this.I finished up 4 Yervoy infusions in April 2012 following radio-static surgery to zap a brain met in March Saw steady shrinkage and was declared NED by Dr on 8/14. Next two brain and body scans were clear. Saw neurosurgeon yesterday for brain scan and consult. The fried tumor spot had a strange look. Looked like the dried up tumor grain was still there, not necessarily larger but had a dime sized circle of liquid around the spot. I had heard that people sometimes see shrinkage followed by some slight growth before seeing shrinkage again. Anybody have any thoughts or experience on this. Dr has me going back for a brain scan in 6 weeks rather than going in via traditional brain surgery now. Needless to say I am rather concerned. It seems odd that this change is 9 mos after completing the Yervoy treatment. Most of the posts I have read regarding Yervoy tumor growth were more immediate. No headaches or other problems have resulted thus far. Thank you in advance for any comments…
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- February 7, 2013 at 12:51 am
I did not do yervoy . I did have a brain met 12 years ago and am doing well. Don't have a comment about your situation. Just hang in there and know there are many people here to support you. I am sure someone with a lot more experience will post a reply. Good luck and hang Tough.
Love and Light
Carole
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- February 7, 2013 at 12:51 am
I did not do yervoy . I did have a brain met 12 years ago and am doing well. Don't have a comment about your situation. Just hang in there and know there are many people here to support you. I am sure someone with a lot more experience will post a reply. Good luck and hang Tough.
Love and Light
Carole
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- February 7, 2013 at 12:51 am
I did not do yervoy . I did have a brain met 12 years ago and am doing well. Don't have a comment about your situation. Just hang in there and know there are many people here to support you. I am sure someone with a lot more experience will post a reply. Good luck and hang Tough.
Love and Light
Carole
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- February 7, 2013 at 3:19 am
My brother did not have Yervoy, so I don't know if this will help you. However, he did have whole brain radiation followed a few months later by cyberknife treatment of one new brain tumor. Several months after the WBR one of the orginal tumors had a ring around it. The radiologist said it could be due to a number of things– an immune response where the body was "cleaning up" the dead tumor tissue, it could be what he termed a "micro-bleed", or it could be edema from the tumor starting to grow again. They decided to wait and do the scans again and 2 months later it was unchanged.
I guess what I'm saying is that it is difficult to tell exactly what is going on from just one MRI. If your doctor suggests that you wait and have another scan in 6 weeks, that is probably the best thing to do. My brother's doctor did tell him to immediately report any symptoms indicating growing brain tumors. Headaches, vision problems, weakness or tingling in arms or legs, things like that.
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- February 7, 2013 at 11:07 pm
Thanks. Great info. Much appreciated. The neurologist wasn’t as clear when it was described initially but I did speak with my primary melanoma oncologist this afternoon and it does sound like it still “evolving” post the radiation and yervoy treatment. He mentioned the micro bleed and leaned towards this being a continuation of the immune response vs the tumor recurring . Not 100% certain of anything yet but as you mention the next scan should give more clarity.
Thanks again for taking the time to respond and for the clarity in which you presented the response. -
- February 7, 2013 at 11:07 pm
Thanks. Great info. Much appreciated. The neurologist wasn’t as clear when it was described initially but I did speak with my primary melanoma oncologist this afternoon and it does sound like it still “evolving” post the radiation and yervoy treatment. He mentioned the micro bleed and leaned towards this being a continuation of the immune response vs the tumor recurring . Not 100% certain of anything yet but as you mention the next scan should give more clarity.
Thanks again for taking the time to respond and for the clarity in which you presented the response. -
- February 7, 2013 at 11:07 pm
Thanks. Great info. Much appreciated. The neurologist wasn’t as clear when it was described initially but I did speak with my primary melanoma oncologist this afternoon and it does sound like it still “evolving” post the radiation and yervoy treatment. He mentioned the micro bleed and leaned towards this being a continuation of the immune response vs the tumor recurring . Not 100% certain of anything yet but as you mention the next scan should give more clarity.
Thanks again for taking the time to respond and for the clarity in which you presented the response.
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- February 7, 2013 at 3:19 am
My brother did not have Yervoy, so I don't know if this will help you. However, he did have whole brain radiation followed a few months later by cyberknife treatment of one new brain tumor. Several months after the WBR one of the orginal tumors had a ring around it. The radiologist said it could be due to a number of things– an immune response where the body was "cleaning up" the dead tumor tissue, it could be what he termed a "micro-bleed", or it could be edema from the tumor starting to grow again. They decided to wait and do the scans again and 2 months later it was unchanged.
I guess what I'm saying is that it is difficult to tell exactly what is going on from just one MRI. If your doctor suggests that you wait and have another scan in 6 weeks, that is probably the best thing to do. My brother's doctor did tell him to immediately report any symptoms indicating growing brain tumors. Headaches, vision problems, weakness or tingling in arms or legs, things like that.
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- February 7, 2013 at 3:19 am
My brother did not have Yervoy, so I don't know if this will help you. However, he did have whole brain radiation followed a few months later by cyberknife treatment of one new brain tumor. Several months after the WBR one of the orginal tumors had a ring around it. The radiologist said it could be due to a number of things– an immune response where the body was "cleaning up" the dead tumor tissue, it could be what he termed a "micro-bleed", or it could be edema from the tumor starting to grow again. They decided to wait and do the scans again and 2 months later it was unchanged.
I guess what I'm saying is that it is difficult to tell exactly what is going on from just one MRI. If your doctor suggests that you wait and have another scan in 6 weeks, that is probably the best thing to do. My brother's doctor did tell him to immediately report any symptoms indicating growing brain tumors. Headaches, vision problems, weakness or tingling in arms or legs, things like that.
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- February 8, 2013 at 2:59 am
Yervoy can work in different time frames for different people. I'll cross my fingers and keep thinking shrink. Ask your Dr. if the MRI is similar to other patients who have shown responses in the brain from Yervoy or SRS.
In the meantime, do what ever the hell you want for the next 6 weeks, worrying won't do anything for you.
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- February 8, 2013 at 2:59 am
Yervoy can work in different time frames for different people. I'll cross my fingers and keep thinking shrink. Ask your Dr. if the MRI is similar to other patients who have shown responses in the brain from Yervoy or SRS.
In the meantime, do what ever the hell you want for the next 6 weeks, worrying won't do anything for you.
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- February 8, 2013 at 2:59 am
Yervoy can work in different time frames for different people. I'll cross my fingers and keep thinking shrink. Ask your Dr. if the MRI is similar to other patients who have shown responses in the brain from Yervoy or SRS.
In the meantime, do what ever the hell you want for the next 6 weeks, worrying won't do anything for you.
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- October 6, 2013 at 9:46 am
Update Oct 6 2012: August saw brutal headaches when I rise from seated to standing position. Scan showed more traditional tumor growth in the head relight frontal lobe. Dr Gutin , cut out the tumor on Sept 17 2013, nice clean job, home on Thursday Sept 20th. Physically feeling great but cognitive issues are still working thru. Steroids lowered my tolerance so unfortunately a common cold fr a 3 yr old morphed into an ER overnight and back to MSK for 2 nights to recover. I didn’t think steroids had that effect so I really blew it by staying less sterile than I should have. All good! Moved back into NED status. Back into vigilance mode. Good luck everybody! Stay educated! Stay proactive! Kiss your wife and kids more! -
- October 6, 2013 at 9:46 am
Update Oct 6 2012: August saw brutal headaches when I rise from seated to standing position. Scan showed more traditional tumor growth in the head relight frontal lobe. Dr Gutin , cut out the tumor on Sept 17 2013, nice clean job, home on Thursday Sept 20th. Physically feeling great but cognitive issues are still working thru. Steroids lowered my tolerance so unfortunately a common cold fr a 3 yr old morphed into an ER overnight and back to MSK for 2 nights to recover. I didn’t think steroids had that effect so I really blew it by staying less sterile than I should have. All good! Moved back into NED status. Back into vigilance mode. Good luck everybody! Stay educated! Stay proactive! Kiss your wife and kids more! -
- October 6, 2013 at 9:46 am
Update Oct 6 2012: August saw brutal headaches when I rise from seated to standing position. Scan showed more traditional tumor growth in the head relight frontal lobe. Dr Gutin , cut out the tumor on Sept 17 2013, nice clean job, home on Thursday Sept 20th. Physically feeling great but cognitive issues are still working thru. Steroids lowered my tolerance so unfortunately a common cold fr a 3 yr old morphed into an ER overnight and back to MSK for 2 nights to recover. I didn’t think steroids had that effect so I really blew it by staying less sterile than I should have. All good! Moved back into NED status. Back into vigilance mode. Good luck everybody! Stay educated! Stay proactive! Kiss your wife and kids more!
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