› Forums › General Melanoma Community › WBR, Gamma Knife.
- This topic has 18 replies, 4 voices, and was last updated 11 years, 1 month ago by
Cielo.
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- March 10, 2013 at 5:20 am
Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week. These were suggested by our Oncologist for possible treatments. We have sleepless nights, trying to decide what's best.
Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week. These were suggested by our Oncologist for possible treatments. We have sleepless nights, trying to decide what's best. We haven't lost hope and my husband wants to keep fighting but can he endure the treatments. He is 66 years old and very weak. He has been on Zelboraf for eleven months. MRI lately showed metastases to the brain. Scans on chest, pelvis and abdomen showed healing and stabilizing. Thank you.
Cielo
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- March 10, 2013 at 6:01 am
Didn't you say your husband had leptomeningial mets? Gamma knife is extremely targeted – focused on a specific tumor. I'm not sure with the type of disease he has if there would be something specific to focus the radiation on. Does he have solid tumors? I could be wrong, but speculating on what I've seen posted here in the past. It seems like WBR would probably be a better choice. I do know that Amy Busby (do a search for her profile/posts) did intrathecall IL-2 for her leptomeningial mets. She also responded well to BRAF but ended up with lepto… mets. She was being treated at MD Anderson. It's not a type of met that is posted about here often – and treatment for more solid tumors may be a bit different. I do know that, in general, gamma knife and WBR are both well tolerated. Hopefully you'll get some other feedback.
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- March 10, 2013 at 6:01 am
Didn't you say your husband had leptomeningial mets? Gamma knife is extremely targeted – focused on a specific tumor. I'm not sure with the type of disease he has if there would be something specific to focus the radiation on. Does he have solid tumors? I could be wrong, but speculating on what I've seen posted here in the past. It seems like WBR would probably be a better choice. I do know that Amy Busby (do a search for her profile/posts) did intrathecall IL-2 for her leptomeningial mets. She also responded well to BRAF but ended up with lepto… mets. She was being treated at MD Anderson. It's not a type of met that is posted about here often – and treatment for more solid tumors may be a bit different. I do know that, in general, gamma knife and WBR are both well tolerated. Hopefully you'll get some other feedback.
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- March 11, 2013 at 2:13 am
Janner, there are two things mentioned on the MRI report: one said leptomeningial disease has developed. then the other issue is, a polypoid lesion about 1.3 x 1.7 cm on the left maxillary sinus. The second issue showed during the december mri with just .7 something….Onc at the time said to watch on the next schedule. Hoping I guess that Zel would take care of it but it has increased in size this time. So may be, that's what they are thinking to radiate. We don't really have the foggest idea . But thank you guys for responding, because I need to get educated, my husband relies on me about informations I'm getting from this site from patients who have gone through some of these treatments.
Thank you.
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- March 11, 2013 at 2:13 am
Janner, there are two things mentioned on the MRI report: one said leptomeningial disease has developed. then the other issue is, a polypoid lesion about 1.3 x 1.7 cm on the left maxillary sinus. The second issue showed during the december mri with just .7 something….Onc at the time said to watch on the next schedule. Hoping I guess that Zel would take care of it but it has increased in size this time. So may be, that's what they are thinking to radiate. We don't really have the foggest idea . But thank you guys for responding, because I need to get educated, my husband relies on me about informations I'm getting from this site from patients who have gone through some of these treatments.
Thank you.
-
- March 11, 2013 at 2:13 am
Janner, there are two things mentioned on the MRI report: one said leptomeningial disease has developed. then the other issue is, a polypoid lesion about 1.3 x 1.7 cm on the left maxillary sinus. The second issue showed during the december mri with just .7 something….Onc at the time said to watch on the next schedule. Hoping I guess that Zel would take care of it but it has increased in size this time. So may be, that's what they are thinking to radiate. We don't really have the foggest idea . But thank you guys for responding, because I need to get educated, my husband relies on me about informations I'm getting from this site from patients who have gone through some of these treatments.
Thank you.
-
- March 10, 2013 at 6:01 am
Didn't you say your husband had leptomeningial mets? Gamma knife is extremely targeted – focused on a specific tumor. I'm not sure with the type of disease he has if there would be something specific to focus the radiation on. Does he have solid tumors? I could be wrong, but speculating on what I've seen posted here in the past. It seems like WBR would probably be a better choice. I do know that Amy Busby (do a search for her profile/posts) did intrathecall IL-2 for her leptomeningial mets. She also responded well to BRAF but ended up with lepto… mets. She was being treated at MD Anderson. It's not a type of met that is posted about here often – and treatment for more solid tumors may be a bit different. I do know that, in general, gamma knife and WBR are both well tolerated. Hopefully you'll get some other feedback.
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- March 10, 2013 at 2:11 pm
Cielo, I responded to your question about WBR vs gamma knife on your previous post. But I forgot to mention that radiation oncologist said that WBR is considered palliative, not curative. In other words, it only works in about 50% of the patients and even when it does work, they don't expect the radiation to cure the melanoma, just relieve the symptoms and slow it down for a while. This is something you should probably factor into your treatment decision.
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- March 11, 2013 at 2:36 am
Thank you POW, I have just read the other post you wrote. First of all, please tell your brother, I include him in my prayers. And yes, these are all very informative issues we need to know before we see the Radiology Onc tomorrow. We also see the Neuro-surgeon Tuesday. All of a sudden, these schedules popped out on our "MyMDAnderson", so we rushed coming to Houston today. We think this is important so we didn't want to cancel the appointment considering there was not enough notice given. Thankfully, we found a place to stay (pricey of course) …there is the biggest RODEO happening here and most hotels are fully booked.
You know POW, my husband's short tem memory has been impaired these past two weeks… and quickly, he has gotten weaker. He doesn't even know how to get out of bed or from sitting on a chair. He has lost his coordination….something like the brain and his body don't corelate. So, things have gotten more difficult for me these days, since, I am the one and only caregiver.
Thank you. Cielo
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- March 11, 2013 at 2:36 am
Thank you POW, I have just read the other post you wrote. First of all, please tell your brother, I include him in my prayers. And yes, these are all very informative issues we need to know before we see the Radiology Onc tomorrow. We also see the Neuro-surgeon Tuesday. All of a sudden, these schedules popped out on our "MyMDAnderson", so we rushed coming to Houston today. We think this is important so we didn't want to cancel the appointment considering there was not enough notice given. Thankfully, we found a place to stay (pricey of course) …there is the biggest RODEO happening here and most hotels are fully booked.
You know POW, my husband's short tem memory has been impaired these past two weeks… and quickly, he has gotten weaker. He doesn't even know how to get out of bed or from sitting on a chair. He has lost his coordination….something like the brain and his body don't corelate. So, things have gotten more difficult for me these days, since, I am the one and only caregiver.
Thank you. Cielo
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- March 11, 2013 at 2:36 am
Thank you POW, I have just read the other post you wrote. First of all, please tell your brother, I include him in my prayers. And yes, these are all very informative issues we need to know before we see the Radiology Onc tomorrow. We also see the Neuro-surgeon Tuesday. All of a sudden, these schedules popped out on our "MyMDAnderson", so we rushed coming to Houston today. We think this is important so we didn't want to cancel the appointment considering there was not enough notice given. Thankfully, we found a place to stay (pricey of course) …there is the biggest RODEO happening here and most hotels are fully booked.
You know POW, my husband's short tem memory has been impaired these past two weeks… and quickly, he has gotten weaker. He doesn't even know how to get out of bed or from sitting on a chair. He has lost his coordination….something like the brain and his body don't corelate. So, things have gotten more difficult for me these days, since, I am the one and only caregiver.
Thank you. Cielo
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- March 10, 2013 at 2:11 pm
Cielo, I responded to your question about WBR vs gamma knife on your previous post. But I forgot to mention that radiation oncologist said that WBR is considered palliative, not curative. In other words, it only works in about 50% of the patients and even when it does work, they don't expect the radiation to cure the melanoma, just relieve the symptoms and slow it down for a while. This is something you should probably factor into your treatment decision.
-
- March 10, 2013 at 2:11 pm
Cielo, I responded to your question about WBR vs gamma knife on your previous post. But I forgot to mention that radiation oncologist said that WBR is considered palliative, not curative. In other words, it only works in about 50% of the patients and even when it does work, they don't expect the radiation to cure the melanoma, just relieve the symptoms and slow it down for a while. This is something you should probably factor into your treatment decision.
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- March 10, 2013 at 4:59 pm
Hi Ceilo,
There's a good webinar (and fairly recent) at the MIF site on treating brain mets with radiation, with the neurosurgeon/director of Gamma Knife services at Yale, http://www.melanomainternational.org/news/brain_metastases1.html She talks a little about WBR, and then extensively about Gamma Knife. Also a bit about other systems like CyberKnife. I'm listening to it again now. It's about an hour and she answers some questions at the end too.
I had Gamma Knife to 2 smaller brain mets as well as 2 resected tumor beds after a double craniotomy in 2011. I have not had WBR. About 9 months before Gamma Knife, I had also had CyberKnife (a system similar but not the same as Gamma Knife) treatment to 2 brain locations. All in all Gamma Knife was very tolerable at the time and would be my strong preference if I needed future treatments again.
For my Gamma Knife procedure they first attached a rigid metal frame to my skull "surgically" with 4 screws and a torque wrench. I like this better than the CyberKnife's more convenient plastic mask, because I knew it would keep my head 100% stable and in place and in line with where the radiation beams are expecting my head to be. Along with recent MRIs of my brain, they also re-MRI'd me the morning of Gamma Knife with the metal frame on (I geuss the frame is non-magnetic). I also like this too compared to CyberKnife where they MRI'd me one week before — how much happens in the brain with active tumors in a week? This issue is also brought up in the webinar when comparing flexi-mask systems with Gamma Knife.
For the actual treatment, they let me hook up my iPhone to some audio speakers in the Gamma Knife room. I had a 3.75 hour playlist, it took 4 hours to Gamma Knife me. None of particular note that day. In that context of a lot going on in my brain, maybe some afterwards, but that's after 3 resected tumors and radiation to 5 tumors and/or tumor beds. There was probably some radiation effect in the months afterward, but since I had a lot going on (double craniotomy, Gamma Knife and shortly thereafter IPI, plus previously treated brain tumors) it's hard to say what after-effects I had specific only to Gamma Knife. I've had stable/shrinking disease for 20 months since now.
Hope this helps. Good luck at your husband's appointments next week.
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- March 11, 2013 at 3:00 am
Thank you Kylez, Wow! These are alot for me to absorb but I am going to try to learn them fastly as much as I could, because, we see the doctors tomorrow and tuesday. So, at least we know what to ask. Our appointment just came instantly!
My husband had some kind of something with a mask in the past radiation he had on his skull (right temple).But with screws and torque wrench? Sounds like carpentry.
Twenty months! That's awesome! This should inspire my husband and hopefully, he'd get the courage to do it. I appreciate it. Thanks and you keep on going yourself.
Cielo.
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- March 11, 2013 at 3:00 am
Thank you Kylez, Wow! These are alot for me to absorb but I am going to try to learn them fastly as much as I could, because, we see the doctors tomorrow and tuesday. So, at least we know what to ask. Our appointment just came instantly!
My husband had some kind of something with a mask in the past radiation he had on his skull (right temple).But with screws and torque wrench? Sounds like carpentry.
Twenty months! That's awesome! This should inspire my husband and hopefully, he'd get the courage to do it. I appreciate it. Thanks and you keep on going yourself.
Cielo.
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- March 11, 2013 at 3:00 am
Thank you Kylez, Wow! These are alot for me to absorb but I am going to try to learn them fastly as much as I could, because, we see the doctors tomorrow and tuesday. So, at least we know what to ask. Our appointment just came instantly!
My husband had some kind of something with a mask in the past radiation he had on his skull (right temple).But with screws and torque wrench? Sounds like carpentry.
Twenty months! That's awesome! This should inspire my husband and hopefully, he'd get the courage to do it. I appreciate it. Thanks and you keep on going yourself.
Cielo.
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- March 10, 2013 at 4:59 pm
Hi Ceilo,
There's a good webinar (and fairly recent) at the MIF site on treating brain mets with radiation, with the neurosurgeon/director of Gamma Knife services at Yale, http://www.melanomainternational.org/news/brain_metastases1.html She talks a little about WBR, and then extensively about Gamma Knife. Also a bit about other systems like CyberKnife. I'm listening to it again now. It's about an hour and she answers some questions at the end too.
I had Gamma Knife to 2 smaller brain mets as well as 2 resected tumor beds after a double craniotomy in 2011. I have not had WBR. About 9 months before Gamma Knife, I had also had CyberKnife (a system similar but not the same as Gamma Knife) treatment to 2 brain locations. All in all Gamma Knife was very tolerable at the time and would be my strong preference if I needed future treatments again.
For my Gamma Knife procedure they first attached a rigid metal frame to my skull "surgically" with 4 screws and a torque wrench. I like this better than the CyberKnife's more convenient plastic mask, because I knew it would keep my head 100% stable and in place and in line with where the radiation beams are expecting my head to be. Along with recent MRIs of my brain, they also re-MRI'd me the morning of Gamma Knife with the metal frame on (I geuss the frame is non-magnetic). I also like this too compared to CyberKnife where they MRI'd me one week before — how much happens in the brain with active tumors in a week? This issue is also brought up in the webinar when comparing flexi-mask systems with Gamma Knife.
For the actual treatment, they let me hook up my iPhone to some audio speakers in the Gamma Knife room. I had a 3.75 hour playlist, it took 4 hours to Gamma Knife me. None of particular note that day. In that context of a lot going on in my brain, maybe some afterwards, but that's after 3 resected tumors and radiation to 5 tumors and/or tumor beds. There was probably some radiation effect in the months afterward, but since I had a lot going on (double craniotomy, Gamma Knife and shortly thereafter IPI, plus previously treated brain tumors) it's hard to say what after-effects I had specific only to Gamma Knife. I've had stable/shrinking disease for 20 months since now.
Hope this helps. Good luck at your husband's appointments next week.
-
- March 10, 2013 at 4:59 pm
Hi Ceilo,
There's a good webinar (and fairly recent) at the MIF site on treating brain mets with radiation, with the neurosurgeon/director of Gamma Knife services at Yale, http://www.melanomainternational.org/news/brain_metastases1.html She talks a little about WBR, and then extensively about Gamma Knife. Also a bit about other systems like CyberKnife. I'm listening to it again now. It's about an hour and she answers some questions at the end too.
I had Gamma Knife to 2 smaller brain mets as well as 2 resected tumor beds after a double craniotomy in 2011. I have not had WBR. About 9 months before Gamma Knife, I had also had CyberKnife (a system similar but not the same as Gamma Knife) treatment to 2 brain locations. All in all Gamma Knife was very tolerable at the time and would be my strong preference if I needed future treatments again.
For my Gamma Knife procedure they first attached a rigid metal frame to my skull "surgically" with 4 screws and a torque wrench. I like this better than the CyberKnife's more convenient plastic mask, because I knew it would keep my head 100% stable and in place and in line with where the radiation beams are expecting my head to be. Along with recent MRIs of my brain, they also re-MRI'd me the morning of Gamma Knife with the metal frame on (I geuss the frame is non-magnetic). I also like this too compared to CyberKnife where they MRI'd me one week before — how much happens in the brain with active tumors in a week? This issue is also brought up in the webinar when comparing flexi-mask systems with Gamma Knife.
For the actual treatment, they let me hook up my iPhone to some audio speakers in the Gamma Knife room. I had a 3.75 hour playlist, it took 4 hours to Gamma Knife me. None of particular note that day. In that context of a lot going on in my brain, maybe some afterwards, but that's after 3 resected tumors and radiation to 5 tumors and/or tumor beds. There was probably some radiation effect in the months afterward, but since I had a lot going on (double craniotomy, Gamma Knife and shortly thereafter IPI, plus previously treated brain tumors) it's hard to say what after-effects I had specific only to Gamma Knife. I've had stable/shrinking disease for 20 months since now.
Hope this helps. Good luck at your husband's appointments next week.
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