› Forums › General Melanoma Community › Another Question – Brain Mets (maybe for Jag)
- This topic has 18 replies, 5 voices, and was last updated 12 years ago by
jag.
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- April 16, 2012 at 12:59 pm
What if someone had a tumour last November and some of it seems a bit bigger. They thing it's mostly dead tissues, but now they're double checking with their group of people. What happens if it's growing and a tumour that can't ben gamma knifed, what are the other options? What if cranitomoy isn't a possibility?
I have 4th infusion of ipi (on my reinduction) so I'm hoping the reasing it could be gettign bigger is because of ip.
Lisa
What if someone had a tumour last November and some of it seems a bit bigger. They thing it's mostly dead tissues, but now they're double checking with their group of people. What happens if it's growing and a tumour that can't ben gamma knifed, what are the other options? What if cranitomoy isn't a possibility?
I have 4th infusion of ipi (on my reinduction) so I'm hoping the reasing it could be gettign bigger is because of ip.
Lisa
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- April 16, 2012 at 3:00 pm
Hi Lisa
I can’t tell you the answer you are looking for but I understand why you are asking. I have an MRI tomorrow for brain mets and I am also being reintroduced to Yervoy, my second infusion is due in 4 days. I am concerned for the same reasons you mention. what if there is growth, could it be from the IPI if not what else can be done. I already had the WBR back in the fall and although a few weeks after final dose I had fatigue and burns on my head I feel I haven’t lost much else and strength is returning. Unlike most people on this site i have more side effects from IPI than I do from the Zelboraf . Itch rash fatigue nausea etc from IPI. Some worts that appeared and then disappeared with Zelboraf doses. Good luck to your future fight.
Kathy D -
- April 16, 2012 at 3:00 pm
Hi Lisa
I can’t tell you the answer you are looking for but I understand why you are asking. I have an MRI tomorrow for brain mets and I am also being reintroduced to Yervoy, my second infusion is due in 4 days. I am concerned for the same reasons you mention. what if there is growth, could it be from the IPI if not what else can be done. I already had the WBR back in the fall and although a few weeks after final dose I had fatigue and burns on my head I feel I haven’t lost much else and strength is returning. Unlike most people on this site i have more side effects from IPI than I do from the Zelboraf . Itch rash fatigue nausea etc from IPI. Some worts that appeared and then disappeared with Zelboraf doses. Good luck to your future fight.
Kathy D -
- April 16, 2012 at 3:00 pm
Hi Lisa
I can’t tell you the answer you are looking for but I understand why you are asking. I have an MRI tomorrow for brain mets and I am also being reintroduced to Yervoy, my second infusion is due in 4 days. I am concerned for the same reasons you mention. what if there is growth, could it be from the IPI if not what else can be done. I already had the WBR back in the fall and although a few weeks after final dose I had fatigue and burns on my head I feel I haven’t lost much else and strength is returning. Unlike most people on this site i have more side effects from IPI than I do from the Zelboraf . Itch rash fatigue nausea etc from IPI. Some worts that appeared and then disappeared with Zelboraf doses. Good luck to your future fight.
Kathy D -
- April 16, 2012 at 3:27 pm
I think that your concern that IPI may be causing tumors in the brain is well founded. In a webinar:
RADIATION TREATMENT FOR BRAIN METASTASES IN MELANOMA
Presented by Veronica Chiang, MD
January, 2012Dr. Chiang indicates many patients are getting brain tumors on IPI, and they are studing if there is a "cause and effect".
My heart goes out to you because there is nothing scarier than tumors in the brain. That is why patients cannot do clinical trials until brain mets are treated & stable. I cannot imagine how you must feel to think that doctors are going to open your brain.
God Bless you.
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- April 16, 2012 at 3:27 pm
I think that your concern that IPI may be causing tumors in the brain is well founded. In a webinar:
RADIATION TREATMENT FOR BRAIN METASTASES IN MELANOMA
Presented by Veronica Chiang, MD
January, 2012Dr. Chiang indicates many patients are getting brain tumors on IPI, and they are studing if there is a "cause and effect".
My heart goes out to you because there is nothing scarier than tumors in the brain. That is why patients cannot do clinical trials until brain mets are treated & stable. I cannot imagine how you must feel to think that doctors are going to open your brain.
God Bless you.
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- April 16, 2012 at 3:27 pm
I think that your concern that IPI may be causing tumors in the brain is well founded. In a webinar:
RADIATION TREATMENT FOR BRAIN METASTASES IN MELANOMA
Presented by Veronica Chiang, MD
January, 2012Dr. Chiang indicates many patients are getting brain tumors on IPI, and they are studing if there is a "cause and effect".
My heart goes out to you because there is nothing scarier than tumors in the brain. That is why patients cannot do clinical trials until brain mets are treated & stable. I cannot imagine how you must feel to think that doctors are going to open your brain.
God Bless you.
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- April 16, 2012 at 3:29 pm
Hey Lisa, my approach to your dilemma would be to find out who can do the surgery and when. Brain surgeries are conterintuitive to what most people think. Since their are no sensory nerves inside the noggin, all that really hurts is the skull that they have cut through and the little bit of skin on your scalp. It is always better to have it taken out surgically then to sit around, wait and wonder. Definitely find a surgeon who has a lot of experience with this type of thing, I have had six, and at this point, I usually see them as a way to get better rather than something to be scared of. Hopefully IPI will finish off whatever is left, if there is a tumor, but the smaller your tumor burden the easier it is to allow IPI to work.
Oh yeah, don't be afraid of steroids. Even with the immune system trying to do it's job. If Ipi is attacking your tumor, it may slow down the attack rate, but a sudden kill would likely cause a lot of inflammation. It is unlikely that it will stop working altogether. I have been on about 7-8 courses of steroids over time, and at one point I had to get my Rabies titer checked when I got scratched by a rabid kitten during biochemotherapy. My WBC count was virtually nil, but the titer was normal.(this after 14yrs of having been vaccinated in the past).
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- April 17, 2012 at 1:09 am
Lisa, let us know what news you get this week.
How firm did your docs seem about the location being inoperable? Did you get to talk to a neurosurgeon directly about your case, or just your oncologist and/or radiation oncologist? How about looking for a second opinion? Some facilities may have access to techniques others don't?
I stumbled across this blog of a glioblastoma patient that mentioned that "…Dr Mark Bernstein at the Toronto Hospital (Western Division)… is perhaps the foremost neurosurgeon in Canada…" (although the blog is recalling events from 15 years ago, he is still practicing there.) This patient was seeking a second opinion after the initial opinion from his neurosurgeon at Wellesley Central. In his case the 2 opinions were the same, though in some case they might not agree. It sounds like Krembil Neuroscience Centre is a big neurosurgery center in Canada?
My second (of 5) lesions was bleeding some months after being cyberknifed. They ended up resecting it (so I understand why you're wanting to find out what options you have…) I've now had 3 tumors resected (including the one that had been bleeding out), with lesions #4 and #5 treated only once with Gamma Knife (last GK round was on 6/17/11.)
Keep holdling on, and taking it one day at a time.
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- April 17, 2012 at 1:09 am
Lisa, let us know what news you get this week.
How firm did your docs seem about the location being inoperable? Did you get to talk to a neurosurgeon directly about your case, or just your oncologist and/or radiation oncologist? How about looking for a second opinion? Some facilities may have access to techniques others don't?
I stumbled across this blog of a glioblastoma patient that mentioned that "…Dr Mark Bernstein at the Toronto Hospital (Western Division)… is perhaps the foremost neurosurgeon in Canada…" (although the blog is recalling events from 15 years ago, he is still practicing there.) This patient was seeking a second opinion after the initial opinion from his neurosurgeon at Wellesley Central. In his case the 2 opinions were the same, though in some case they might not agree. It sounds like Krembil Neuroscience Centre is a big neurosurgery center in Canada?
My second (of 5) lesions was bleeding some months after being cyberknifed. They ended up resecting it (so I understand why you're wanting to find out what options you have…) I've now had 3 tumors resected (including the one that had been bleeding out), with lesions #4 and #5 treated only once with Gamma Knife (last GK round was on 6/17/11.)
Keep holdling on, and taking it one day at a time.
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- April 17, 2012 at 1:09 am
Lisa, let us know what news you get this week.
How firm did your docs seem about the location being inoperable? Did you get to talk to a neurosurgeon directly about your case, or just your oncologist and/or radiation oncologist? How about looking for a second opinion? Some facilities may have access to techniques others don't?
I stumbled across this blog of a glioblastoma patient that mentioned that "…Dr Mark Bernstein at the Toronto Hospital (Western Division)… is perhaps the foremost neurosurgeon in Canada…" (although the blog is recalling events from 15 years ago, he is still practicing there.) This patient was seeking a second opinion after the initial opinion from his neurosurgeon at Wellesley Central. In his case the 2 opinions were the same, though in some case they might not agree. It sounds like Krembil Neuroscience Centre is a big neurosurgery center in Canada?
My second (of 5) lesions was bleeding some months after being cyberknifed. They ended up resecting it (so I understand why you're wanting to find out what options you have…) I've now had 3 tumors resected (including the one that had been bleeding out), with lesions #4 and #5 treated only once with Gamma Knife (last GK round was on 6/17/11.)
Keep holdling on, and taking it one day at a time.
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- April 17, 2012 at 1:58 am
Lisa, in my case it helped to discuss the possible side effects of the surgery and understand the ideas, mull them over and then consider the alternatives. In my case, since the tumors were not radiation responsive, the alternative was death. I emphasized this to my neurosurgeon, and he understood it completely. Where are you being seen and who would be reviewing your case for neurosurgery? You are able to obtain digital copies of your MRI, and have them reviewed at other facilities.
Glad I can be of help. Let me know if you have any further questions.
Warm Regards
John
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- April 17, 2012 at 1:58 am
Lisa, in my case it helped to discuss the possible side effects of the surgery and understand the ideas, mull them over and then consider the alternatives. In my case, since the tumors were not radiation responsive, the alternative was death. I emphasized this to my neurosurgeon, and he understood it completely. Where are you being seen and who would be reviewing your case for neurosurgery? You are able to obtain digital copies of your MRI, and have them reviewed at other facilities.
Glad I can be of help. Let me know if you have any further questions.
Warm Regards
John
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- April 17, 2012 at 1:58 am
Lisa, in my case it helped to discuss the possible side effects of the surgery and understand the ideas, mull them over and then consider the alternatives. In my case, since the tumors were not radiation responsive, the alternative was death. I emphasized this to my neurosurgeon, and he understood it completely. Where are you being seen and who would be reviewing your case for neurosurgery? You are able to obtain digital copies of your MRI, and have them reviewed at other facilities.
Glad I can be of help. Let me know if you have any further questions.
Warm Regards
John
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- April 16, 2012 at 3:29 pm
Hey Lisa, my approach to your dilemma would be to find out who can do the surgery and when. Brain surgeries are conterintuitive to what most people think. Since their are no sensory nerves inside the noggin, all that really hurts is the skull that they have cut through and the little bit of skin on your scalp. It is always better to have it taken out surgically then to sit around, wait and wonder. Definitely find a surgeon who has a lot of experience with this type of thing, I have had six, and at this point, I usually see them as a way to get better rather than something to be scared of. Hopefully IPI will finish off whatever is left, if there is a tumor, but the smaller your tumor burden the easier it is to allow IPI to work.
Oh yeah, don't be afraid of steroids. Even with the immune system trying to do it's job. If Ipi is attacking your tumor, it may slow down the attack rate, but a sudden kill would likely cause a lot of inflammation. It is unlikely that it will stop working altogether. I have been on about 7-8 courses of steroids over time, and at one point I had to get my Rabies titer checked when I got scratched by a rabid kitten during biochemotherapy. My WBC count was virtually nil, but the titer was normal.(this after 14yrs of having been vaccinated in the past).
-
- April 16, 2012 at 3:29 pm
Hey Lisa, my approach to your dilemma would be to find out who can do the surgery and when. Brain surgeries are conterintuitive to what most people think. Since their are no sensory nerves inside the noggin, all that really hurts is the skull that they have cut through and the little bit of skin on your scalp. It is always better to have it taken out surgically then to sit around, wait and wonder. Definitely find a surgeon who has a lot of experience with this type of thing, I have had six, and at this point, I usually see them as a way to get better rather than something to be scared of. Hopefully IPI will finish off whatever is left, if there is a tumor, but the smaller your tumor burden the easier it is to allow IPI to work.
Oh yeah, don't be afraid of steroids. Even with the immune system trying to do it's job. If Ipi is attacking your tumor, it may slow down the attack rate, but a sudden kill would likely cause a lot of inflammation. It is unlikely that it will stop working altogether. I have been on about 7-8 courses of steroids over time, and at one point I had to get my Rabies titer checked when I got scratched by a rabid kitten during biochemotherapy. My WBC count was virtually nil, but the titer was normal.(this after 14yrs of having been vaccinated in the past).
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