› Forums › General Melanoma Community › Gamma knife-SRS advice
- This topic has 27 replies, 7 voices, and was last updated 8 years, 9 months ago by
Maria C.
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- August 18, 2016 at 4:48 pm
Hey folks-
My wife has had a partial response to iPi-nivo combo – all previous tumors in liver, bone, lungs and brain disappeared after 3 rounds, but 3 new brain mets appeared and have grown in the past 3 weeks.
so, our onc at a major medical school hospital is recommending we meet with a radiation oncologist to discuss srs for the remaining 3 spots.
not knowing much about this srs field, is there variation in quality from place to place that we should consider? Is there a place or two considered to be outstanding at it?
we love our oncologist and picked him in part bc of his considerable experience and clinical judgement in treating met melanoma with iPi+nivo. but need some advice about srs.
were also seeking second opinions from Sloan Kettering, Dana farber, and Johns Hopkins.
thanks!
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- August 18, 2016 at 5:12 pm
Hi John,
I'm sure there are differences between institutions, team members, machine models, etc. But I don't know how one would know exactly. I'm very happy where I'm seen, also a major medical school hospital. The Gamma Knife team there is led by a radiation oncologist and a neurosurgeon. The neurosurgeon did my second craniotomy surgery in 2011. A couple of weeks later, Gamma Knife was done, which I think the neurosurgeon had input on, but was led by the radiation oncologist.
I *do* like the Gamma Knife frame, which holds the head (seemingly) 99.9% immobile. I want the radiation to go exactly where the rad onc wants it. I don't want to worry about blowing the treatment if I move my head 1mm. That may just be a psychological issue/perception but as such was still important to me.
Congrats to both of you on the partial response, in so many areas. Hopefully a little bit of "trimming" with GK will take care of what's left for the long run. "Trimming" is actually the word my oncologist used with me the other day. Good luck on all of this.
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- August 18, 2016 at 7:08 pm
I had SRS with the mask for 5 sessions and it was quite comfortable once I got used to it and I didn't feel as though my head moved much or at all. I personally don't know of too many strong opinions re: gamma knife vs cyber knife vs SRS, I think they're all pretty comparable treatments. Seems to be there is less nuance amongst treatment centers when it comes to the delivery of targeted radiation, as compared to medical treatment where different doctors might prescribe differently in the same situation. I'd say you should be fine most anywhere as long as you're comfortable with the Doctor.
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- August 18, 2016 at 7:08 pm
I had SRS with the mask for 5 sessions and it was quite comfortable once I got used to it and I didn't feel as though my head moved much or at all. I personally don't know of too many strong opinions re: gamma knife vs cyber knife vs SRS, I think they're all pretty comparable treatments. Seems to be there is less nuance amongst treatment centers when it comes to the delivery of targeted radiation, as compared to medical treatment where different doctors might prescribe differently in the same situation. I'd say you should be fine most anywhere as long as you're comfortable with the Doctor.
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- August 18, 2016 at 7:08 pm
I had SRS with the mask for 5 sessions and it was quite comfortable once I got used to it and I didn't feel as though my head moved much or at all. I personally don't know of too many strong opinions re: gamma knife vs cyber knife vs SRS, I think they're all pretty comparable treatments. Seems to be there is less nuance amongst treatment centers when it comes to the delivery of targeted radiation, as compared to medical treatment where different doctors might prescribe differently in the same situation. I'd say you should be fine most anywhere as long as you're comfortable with the Doctor.
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- August 18, 2016 at 5:12 pm
Hi John,
I'm sure there are differences between institutions, team members, machine models, etc. But I don't know how one would know exactly. I'm very happy where I'm seen, also a major medical school hospital. The Gamma Knife team there is led by a radiation oncologist and a neurosurgeon. The neurosurgeon did my second craniotomy surgery in 2011. A couple of weeks later, Gamma Knife was done, which I think the neurosurgeon had input on, but was led by the radiation oncologist.
I *do* like the Gamma Knife frame, which holds the head (seemingly) 99.9% immobile. I want the radiation to go exactly where the rad onc wants it. I don't want to worry about blowing the treatment if I move my head 1mm. That may just be a psychological issue/perception but as such was still important to me.
Congrats to both of you on the partial response, in so many areas. Hopefully a little bit of "trimming" with GK will take care of what's left for the long run. "Trimming" is actually the word my oncologist used with me the other day. Good luck on all of this.
-
- August 18, 2016 at 5:12 pm
Hi John,
I'm sure there are differences between institutions, team members, machine models, etc. But I don't know how one would know exactly. I'm very happy where I'm seen, also a major medical school hospital. The Gamma Knife team there is led by a radiation oncologist and a neurosurgeon. The neurosurgeon did my second craniotomy surgery in 2011. A couple of weeks later, Gamma Knife was done, which I think the neurosurgeon had input on, but was led by the radiation oncologist.
I *do* like the Gamma Knife frame, which holds the head (seemingly) 99.9% immobile. I want the radiation to go exactly where the rad onc wants it. I don't want to worry about blowing the treatment if I move my head 1mm. That may just be a psychological issue/perception but as such was still important to me.
Congrats to both of you on the partial response, in so many areas. Hopefully a little bit of "trimming" with GK will take care of what's left for the long run. "Trimming" is actually the word my oncologist used with me the other day. Good luck on all of this.
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- August 19, 2016 at 6:48 am
Hi,Yes, there is a difference where your wife is treated. I recommend seeing at least 2 radiation oncologists about treatment. Ask them how long they have been treating patients, how often they preform SRS, how many patients and tumors they have treated…
8 of 9 of my Mom’s first brain mets were treated at 1 time. The 9th was deemed a blood vessel. 4 months and 17 brain mets later we were told by a new radiation oncologist that the blood vessel was a brain met. The original doctor missed it then and in followups when radiologists reading the MRIs said it was a brain met he dismissed them.
Ask your doctor about getting ipi within a week of SRS. My Mom did that and her results were amazing. – You might be able to do this with Keytruda.
PS
Check the posti I have made on these topics by clicking ny name. -
- August 19, 2016 at 6:48 am
Hi,Yes, there is a difference where your wife is treated. I recommend seeing at least 2 radiation oncologists about treatment. Ask them how long they have been treating patients, how often they preform SRS, how many patients and tumors they have treated…
8 of 9 of my Mom’s first brain mets were treated at 1 time. The 9th was deemed a blood vessel. 4 months and 17 brain mets later we were told by a new radiation oncologist that the blood vessel was a brain met. The original doctor missed it then and in followups when radiologists reading the MRIs said it was a brain met he dismissed them.
Ask your doctor about getting ipi within a week of SRS. My Mom did that and her results were amazing. – You might be able to do this with Keytruda.
PS
Check the posti I have made on these topics by clicking ny name. -
- August 19, 2016 at 6:48 am
Hi,Yes, there is a difference where your wife is treated. I recommend seeing at least 2 radiation oncologists about treatment. Ask them how long they have been treating patients, how often they preform SRS, how many patients and tumors they have treated…
8 of 9 of my Mom’s first brain mets were treated at 1 time. The 9th was deemed a blood vessel. 4 months and 17 brain mets later we were told by a new radiation oncologist that the blood vessel was a brain met. The original doctor missed it then and in followups when radiologists reading the MRIs said it was a brain met he dismissed them.
Ask your doctor about getting ipi within a week of SRS. My Mom did that and her results were amazing. – You might be able to do this with Keytruda.
PS
Check the posti I have made on these topics by clicking ny name. -
- August 19, 2016 at 7:00 pm
Hey John,
Sorry your wife is facing this, John. I agree with getting additional opinions. Go to the radiology oncologist who does the most, most often…and that seems the most real to you and your wife. There is actually not that much difference between gamma knife and stereotactic radiation. It is really just a difference between the equipment used. I would care a great deal more about the experience of the person using the equipment. A big difference is whether you are bolted in or held in place by a mask. Some folks don't trust the mask will hold them still enough. However, I had the bolted in halo and its placement and removal was rather similar to some sort of torture dreamed up by a twisted mind. Others, however, had much better experiences. If I were facing that again I would opt for a mask. That being said…I lived!! Both through the procedure (back in 2010) and today! So….I'll take it!!
Additionally, hopefully your wife will benefit by the potential, positive synergistic effect that radiation has when given in close proximity to/with immunotherapy. Here is a post talking about that with some additional links to pertinent articles within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
I wish you both well with whatever you decide. Yours, celeste
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- August 19, 2016 at 7:00 pm
Hey John,
Sorry your wife is facing this, John. I agree with getting additional opinions. Go to the radiology oncologist who does the most, most often…and that seems the most real to you and your wife. There is actually not that much difference between gamma knife and stereotactic radiation. It is really just a difference between the equipment used. I would care a great deal more about the experience of the person using the equipment. A big difference is whether you are bolted in or held in place by a mask. Some folks don't trust the mask will hold them still enough. However, I had the bolted in halo and its placement and removal was rather similar to some sort of torture dreamed up by a twisted mind. Others, however, had much better experiences. If I were facing that again I would opt for a mask. That being said…I lived!! Both through the procedure (back in 2010) and today! So….I'll take it!!
Additionally, hopefully your wife will benefit by the potential, positive synergistic effect that radiation has when given in close proximity to/with immunotherapy. Here is a post talking about that with some additional links to pertinent articles within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
I wish you both well with whatever you decide. Yours, celeste
-
- August 19, 2016 at 7:00 pm
Hey John,
Sorry your wife is facing this, John. I agree with getting additional opinions. Go to the radiology oncologist who does the most, most often…and that seems the most real to you and your wife. There is actually not that much difference between gamma knife and stereotactic radiation. It is really just a difference between the equipment used. I would care a great deal more about the experience of the person using the equipment. A big difference is whether you are bolted in or held in place by a mask. Some folks don't trust the mask will hold them still enough. However, I had the bolted in halo and its placement and removal was rather similar to some sort of torture dreamed up by a twisted mind. Others, however, had much better experiences. If I were facing that again I would opt for a mask. That being said…I lived!! Both through the procedure (back in 2010) and today! So….I'll take it!!
Additionally, hopefully your wife will benefit by the potential, positive synergistic effect that radiation has when given in close proximity to/with immunotherapy. Here is a post talking about that with some additional links to pertinent articles within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
I wish you both well with whatever you decide. Yours, celeste
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- August 19, 2016 at 11:54 pm
I think the team is important…neurosurgeon, radiation oncologist, medical physicist. They did a 3-D 1mm slice on my MRI. They don't want to miss or confuse anything. It was really cool as they sat down with me showed me the plan…like Patina said how they discern what is what and don't confuse something. The harness was not so comfortable but did keep me stable. Now just need treatment to do its job.
Josh
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- August 19, 2016 at 11:54 pm
I think the team is important…neurosurgeon, radiation oncologist, medical physicist. They did a 3-D 1mm slice on my MRI. They don't want to miss or confuse anything. It was really cool as they sat down with me showed me the plan…like Patina said how they discern what is what and don't confuse something. The harness was not so comfortable but did keep me stable. Now just need treatment to do its job.
Josh
-
- August 19, 2016 at 11:54 pm
I think the team is important…neurosurgeon, radiation oncologist, medical physicist. They did a 3-D 1mm slice on my MRI. They don't want to miss or confuse anything. It was really cool as they sat down with me showed me the plan…like Patina said how they discern what is what and don't confuse something. The harness was not so comfortable but did keep me stable. Now just need treatment to do its job.
Josh
-
- August 21, 2016 at 2:17 am
Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.
we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.
her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?
She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.
With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…
-
- August 21, 2016 at 2:17 am
Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.
we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.
her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?
She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.
With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…
-
- August 21, 2016 at 2:17 am
Thanks everyone for the advice, I really appreciate it. The guy who were seeing has been at univ of Michigan for 20 yrs, plus residency at Harvard and has done thousands of these. I'm pretty sure he's qualified and very good at this.
we are trying to get other opinions, but with the brain mets my wife has been told not to fly so we're relying on the possibility of phone consults. Also the mets are growing – visibly larger in a 3 week period – so we don't want to wait any longer.
her onc, who we love and trust very much, is concerned with the inflammatory effects of dosing ipi or nivo too close to the srs – thinking 4 weeks afterward maybe and it's been 6 weeks since her last dose, so not much chance of combinatorial effects I think?
She is at her 4th cycle on the combo so he might move her straight to nivo alone, having seen too many people take that 4th dose and then have to be off treatment entirely.
With ipi and nivo they are still struggling to find the balance between killing the cancer and toxicity…
-
- August 23, 2016 at 3:31 am
Hi John – just hearing today that my onc is also advising not to adminster immunotherapy too close to my cyberknife treatment because I will need to go on and through steroids first as a safety precaution. He wants my brain activity to settle down after the 5-day radiation treatment…meantime I'm concerned I'll miss out on the radiation/immunotherapy synergestic effect. Definitely trust doc orders but am a bit confused on how others have done so well after being treated with SRS within a week of immunotherapy?
Encouraged that your wife's doctors are carefully figuring out the right cocktail mix of ipi & nivo for her particular case…please keep us posted!
-
- August 23, 2016 at 3:31 am
Hi John – just hearing today that my onc is also advising not to adminster immunotherapy too close to my cyberknife treatment because I will need to go on and through steroids first as a safety precaution. He wants my brain activity to settle down after the 5-day radiation treatment…meantime I'm concerned I'll miss out on the radiation/immunotherapy synergestic effect. Definitely trust doc orders but am a bit confused on how others have done so well after being treated with SRS within a week of immunotherapy?
Encouraged that your wife's doctors are carefully figuring out the right cocktail mix of ipi & nivo for her particular case…please keep us posted!
-
- August 23, 2016 at 3:31 am
Hi John – just hearing today that my onc is also advising not to adminster immunotherapy too close to my cyberknife treatment because I will need to go on and through steroids first as a safety precaution. He wants my brain activity to settle down after the 5-day radiation treatment…meantime I'm concerned I'll miss out on the radiation/immunotherapy synergestic effect. Definitely trust doc orders but am a bit confused on how others have done so well after being treated with SRS within a week of immunotherapy?
Encouraged that your wife's doctors are carefully figuring out the right cocktail mix of ipi & nivo for her particular case…please keep us posted!
-
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