› Forums › General Melanoma Community › Post cranio and GK: adjuvant or wait and watch ?
- This topic has 18 replies, 3 voices, and was last updated 13 years, 1 month ago by
Lisa13.
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- November 16, 2011 at 7:06 am
Hi wise MPIP-ers. Asking again on behalf of a friend who – as you can imagine – has a lot on his plate right now. He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last. We are both working in Asia. His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared. His U.S doctor (Mayo Clinic) on the other hand, says don't waste th
Hi wise MPIP-ers. Asking again on behalf of a friend who – as you can imagine – has a lot on his plate right now. He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last. We are both working in Asia. His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared. His U.S doctor (Mayo Clinic) on the other hand, says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.
If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice. Do any of you have thoughts or evidence either way for this decision ?
any and all advice and opinions gratefully received – with much thanks to those people who are still kicking mel in the face every day….
AlisonC
Stage IIIB
NED since 2001
- Replies
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- November 16, 2011 at 8:44 am
Allison,
I just had this discussion with my melanoma specialist. He presented me with a few options. As of the last PET I was clear and during this discussion he is presumming that the SRS will work with plan B being a crainectomy. Now, remember that each of us shows different pathology and patterns.
For now he does not want to put me on any drugs. In the past I've fought for sugeries before but he is not pushing any right now. He feels that at this point he is not seeing much success with Temador with melanoma. Also feels that while Ippi and Braf (I am positive) he isn't seeing trials results that are convincing him. He did tell me if there is anything left in the brain he will definitlely push it but he personally wants my inmune system to heal for now. Now he might have a different opinion after the next scans.
I read on the board the other day that they are doing some changes on the Braf drug. I know that my Dr has put this possibility as far out as an option for me that he can. Maybe after some tweeks this will change his mind.
Let us know what your friend are recommended. I know that with all of the steroids I'm on I am worried that the rest of my body will allow mel take over……
Linda
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- November 16, 2011 at 8:44 am
Allison,
I just had this discussion with my melanoma specialist. He presented me with a few options. As of the last PET I was clear and during this discussion he is presumming that the SRS will work with plan B being a crainectomy. Now, remember that each of us shows different pathology and patterns.
For now he does not want to put me on any drugs. In the past I've fought for sugeries before but he is not pushing any right now. He feels that at this point he is not seeing much success with Temador with melanoma. Also feels that while Ippi and Braf (I am positive) he isn't seeing trials results that are convincing him. He did tell me if there is anything left in the brain he will definitlely push it but he personally wants my inmune system to heal for now. Now he might have a different opinion after the next scans.
I read on the board the other day that they are doing some changes on the Braf drug. I know that my Dr has put this possibility as far out as an option for me that he can. Maybe after some tweeks this will change his mind.
Let us know what your friend are recommended. I know that with all of the steroids I'm on I am worried that the rest of my body will allow mel take over……
Linda
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- November 16, 2011 at 2:36 pm
Hi Allison,
I just had gamma knife treatment yesterday on 2 brain mets. Since one is 2.3 cm, the gamma knife might just shrink it down completely and kill it, but it may still be there (just not growing). Or, it can disappear.
On my first 12 week scan after IPI, I had 50% reduction of lung mets, including the disappearance of a few and no other mets anywhere in my body, except now these 2 brain mets. Even though the ipi didn't work on these brain mets, since they've been probably growing in my brain since August, they are hopeful that the yervoy lymphocytes can still find their way in the brain and hopefully help them not grow anymore. There are only 2 people on this board whose brain mets completely vanished on ipi and also know a couple more people who developed brain mets after ipi and have had no more tumours in brain for 17 months so far!
The best way to increase your immune system and build up great killer t lyphmphocytes to kill tumour cells is Yervoy. At least this is systemic and may work wonders to keep the cancer from coming back for a while. My biggest fear now is the potential micromets in my brain, which I have to remain positive that yervoy is still working to keep them from growing. So far, since August, I've had 2 brain mets – obviously there's been no more, or maybe the ipi is keeping them from growing.
As for drugs, they gave me steriods during treatment, but nothing after. Steriods can make the immune system weak, so unless I end up with really bad headaches, etc, I'm holding out.
I wish your friend the best of luck. I totally agree it's best to do something that nothing at all.
Linda, do you think you might try ipi??
Lisa
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- November 16, 2011 at 2:53 pm
Lisa,
Right now the rest of my scans are clear. For now they want me to wait and see what the brain does. For right now I am on too much steroids to even consider starting anything with immunotherapy! My mel specialist went through 3 options that can pass the brain barrier but he really isn't looking that way right now. My history has been unique and always comes one tumor at a time. So for right now we're just dealing with the brain met.
My team say any headache at all have to be on the steroids (did have a major bleed of a little less then 1cm). The issue I'm having is the pressure does not leave. Personally I feel that one of the rarer side effects of steroids is headaches! My headache is not bad. Right now they are weaning less once again, that also causes it's own issues! Last scan was stable after 2 weeks. I think the next scan will be in beginning of Dec.
Linda
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- November 19, 2011 at 6:59 pm
Hi Linda,
I like to hear your story as your tumour is the same size as mine and deep in the brain. I know craniotomy is Plan B for you, but I've got a good feeling your tumour will shrink and stabilize or completely disappear some day. What did your Dr. say about the chances of a larger tumour being destroyed or disappear from gamma knife? What were his 3 options for brain barrier?
Even though having brain mets suck- you're lucky you only have 1. As you've mentioned before, you've been quite lucky with 1 tumour at a time coming and getting rid of it. I know those days were probably sad and scary, but here you are, 5 years later doing it again! I'm really hoping that these 2 brain mets I got will be the only ones I get for awhile because ipi may help that. I spoke to someone who also had great success from ipi (tumours shrank) but then came the brain mets. That was 18 months ago for him and nothing more has appeared.
I think in time you'll finally be off these steroids. I only got an injection of steriods during my treatment – nothing else. I've never experienced symptoms from my brain met which they said was abnormal. Once you're off the steriods, you can focus on getting that immune system strong.:)
Lisa
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- November 19, 2011 at 6:59 pm
Hi Linda,
I like to hear your story as your tumour is the same size as mine and deep in the brain. I know craniotomy is Plan B for you, but I've got a good feeling your tumour will shrink and stabilize or completely disappear some day. What did your Dr. say about the chances of a larger tumour being destroyed or disappear from gamma knife? What were his 3 options for brain barrier?
Even though having brain mets suck- you're lucky you only have 1. As you've mentioned before, you've been quite lucky with 1 tumour at a time coming and getting rid of it. I know those days were probably sad and scary, but here you are, 5 years later doing it again! I'm really hoping that these 2 brain mets I got will be the only ones I get for awhile because ipi may help that. I spoke to someone who also had great success from ipi (tumours shrank) but then came the brain mets. That was 18 months ago for him and nothing more has appeared.
I think in time you'll finally be off these steroids. I only got an injection of steriods during my treatment – nothing else. I've never experienced symptoms from my brain met which they said was abnormal. Once you're off the steriods, you can focus on getting that immune system strong.:)
Lisa
-
- November 19, 2011 at 6:59 pm
Hi Linda,
I like to hear your story as your tumour is the same size as mine and deep in the brain. I know craniotomy is Plan B for you, but I've got a good feeling your tumour will shrink and stabilize or completely disappear some day. What did your Dr. say about the chances of a larger tumour being destroyed or disappear from gamma knife? What were his 3 options for brain barrier?
Even though having brain mets suck- you're lucky you only have 1. As you've mentioned before, you've been quite lucky with 1 tumour at a time coming and getting rid of it. I know those days were probably sad and scary, but here you are, 5 years later doing it again! I'm really hoping that these 2 brain mets I got will be the only ones I get for awhile because ipi may help that. I spoke to someone who also had great success from ipi (tumours shrank) but then came the brain mets. That was 18 months ago for him and nothing more has appeared.
I think in time you'll finally be off these steroids. I only got an injection of steriods during my treatment – nothing else. I've never experienced symptoms from my brain met which they said was abnormal. Once you're off the steriods, you can focus on getting that immune system strong.:)
Lisa
-
- November 16, 2011 at 2:53 pm
Lisa,
Right now the rest of my scans are clear. For now they want me to wait and see what the brain does. For right now I am on too much steroids to even consider starting anything with immunotherapy! My mel specialist went through 3 options that can pass the brain barrier but he really isn't looking that way right now. My history has been unique and always comes one tumor at a time. So for right now we're just dealing with the brain met.
My team say any headache at all have to be on the steroids (did have a major bleed of a little less then 1cm). The issue I'm having is the pressure does not leave. Personally I feel that one of the rarer side effects of steroids is headaches! My headache is not bad. Right now they are weaning less once again, that also causes it's own issues! Last scan was stable after 2 weeks. I think the next scan will be in beginning of Dec.
Linda
-
- November 16, 2011 at 2:53 pm
Lisa,
Right now the rest of my scans are clear. For now they want me to wait and see what the brain does. For right now I am on too much steroids to even consider starting anything with immunotherapy! My mel specialist went through 3 options that can pass the brain barrier but he really isn't looking that way right now. My history has been unique and always comes one tumor at a time. So for right now we're just dealing with the brain met.
My team say any headache at all have to be on the steroids (did have a major bleed of a little less then 1cm). The issue I'm having is the pressure does not leave. Personally I feel that one of the rarer side effects of steroids is headaches! My headache is not bad. Right now they are weaning less once again, that also causes it's own issues! Last scan was stable after 2 weeks. I think the next scan will be in beginning of Dec.
Linda
-
- November 16, 2011 at 2:36 pm
Hi Allison,
I just had gamma knife treatment yesterday on 2 brain mets. Since one is 2.3 cm, the gamma knife might just shrink it down completely and kill it, but it may still be there (just not growing). Or, it can disappear.
On my first 12 week scan after IPI, I had 50% reduction of lung mets, including the disappearance of a few and no other mets anywhere in my body, except now these 2 brain mets. Even though the ipi didn't work on these brain mets, since they've been probably growing in my brain since August, they are hopeful that the yervoy lymphocytes can still find their way in the brain and hopefully help them not grow anymore. There are only 2 people on this board whose brain mets completely vanished on ipi and also know a couple more people who developed brain mets after ipi and have had no more tumours in brain for 17 months so far!
The best way to increase your immune system and build up great killer t lyphmphocytes to kill tumour cells is Yervoy. At least this is systemic and may work wonders to keep the cancer from coming back for a while. My biggest fear now is the potential micromets in my brain, which I have to remain positive that yervoy is still working to keep them from growing. So far, since August, I've had 2 brain mets – obviously there's been no more, or maybe the ipi is keeping them from growing.
As for drugs, they gave me steriods during treatment, but nothing after. Steriods can make the immune system weak, so unless I end up with really bad headaches, etc, I'm holding out.
I wish your friend the best of luck. I totally agree it's best to do something that nothing at all.
Linda, do you think you might try ipi??
Lisa
-
- November 16, 2011 at 2:36 pm
Hi Allison,
I just had gamma knife treatment yesterday on 2 brain mets. Since one is 2.3 cm, the gamma knife might just shrink it down completely and kill it, but it may still be there (just not growing). Or, it can disappear.
On my first 12 week scan after IPI, I had 50% reduction of lung mets, including the disappearance of a few and no other mets anywhere in my body, except now these 2 brain mets. Even though the ipi didn't work on these brain mets, since they've been probably growing in my brain since August, they are hopeful that the yervoy lymphocytes can still find their way in the brain and hopefully help them not grow anymore. There are only 2 people on this board whose brain mets completely vanished on ipi and also know a couple more people who developed brain mets after ipi and have had no more tumours in brain for 17 months so far!
The best way to increase your immune system and build up great killer t lyphmphocytes to kill tumour cells is Yervoy. At least this is systemic and may work wonders to keep the cancer from coming back for a while. My biggest fear now is the potential micromets in my brain, which I have to remain positive that yervoy is still working to keep them from growing. So far, since August, I've had 2 brain mets – obviously there's been no more, or maybe the ipi is keeping them from growing.
As for drugs, they gave me steriods during treatment, but nothing after. Steriods can make the immune system weak, so unless I end up with really bad headaches, etc, I'm holding out.
I wish your friend the best of luck. I totally agree it's best to do something that nothing at all.
Linda, do you think you might try ipi??
Lisa
-
- November 16, 2011 at 8:44 am
Allison,
I just had this discussion with my melanoma specialist. He presented me with a few options. As of the last PET I was clear and during this discussion he is presumming that the SRS will work with plan B being a crainectomy. Now, remember that each of us shows different pathology and patterns.
For now he does not want to put me on any drugs. In the past I've fought for sugeries before but he is not pushing any right now. He feels that at this point he is not seeing much success with Temador with melanoma. Also feels that while Ippi and Braf (I am positive) he isn't seeing trials results that are convincing him. He did tell me if there is anything left in the brain he will definitlely push it but he personally wants my inmune system to heal for now. Now he might have a different opinion after the next scans.
I read on the board the other day that they are doing some changes on the Braf drug. I know that my Dr has put this possibility as far out as an option for me that he can. Maybe after some tweeks this will change his mind.
Let us know what your friend are recommended. I know that with all of the steroids I'm on I am worried that the rest of my body will allow mel take over……
Linda
-
- November 16, 2011 at 3:36 pm
Alison,
Not sure I understand the Mayo Dr's reasoning as there are obviously cancer cells in the brain and most likely many other places in the body. Most all mel patients are never NED which to me should be "No Existence of Disease" this no evidence of disease is a bunch of crap. Once someone has become Stage II, III, or IV they should be treated aggressively, I just don't get Dr's reasoning to wait for a tumor burden to present itself before taking action-this is just plain stupid!
It is really unbelievable all of the inconsistencies across all of the centers in treating this disease.
-
- November 16, 2011 at 3:36 pm
Alison,
Not sure I understand the Mayo Dr's reasoning as there are obviously cancer cells in the brain and most likely many other places in the body. Most all mel patients are never NED which to me should be "No Existence of Disease" this no evidence of disease is a bunch of crap. Once someone has become Stage II, III, or IV they should be treated aggressively, I just don't get Dr's reasoning to wait for a tumor burden to present itself before taking action-this is just plain stupid!
It is really unbelievable all of the inconsistencies across all of the centers in treating this disease.
-
- November 16, 2011 at 3:36 pm
Alison,
Not sure I understand the Mayo Dr's reasoning as there are obviously cancer cells in the brain and most likely many other places in the body. Most all mel patients are never NED which to me should be "No Existence of Disease" this no evidence of disease is a bunch of crap. Once someone has become Stage II, III, or IV they should be treated aggressively, I just don't get Dr's reasoning to wait for a tumor burden to present itself before taking action-this is just plain stupid!
It is really unbelievable all of the inconsistencies across all of the centers in treating this disease.
-
- November 16, 2011 at 10:10 pm
Even FDA approved drugs only give a slim (20%) chance of the drugs to work. If you have no evidence to see if the drug works many are just becoming your body even more toxic. Some of the drugs will work for a short amount of time, if you really don't need the drug at the time what will you do when you need this drug?
There are so many inconsistencies because we haven't found the answer…… A drug that passes through the brain is even less, but the chance for SRS, Gamma knife or crainectomy, if only one or two tumors actually is better a chance than systemic treatments.
Just a different opinion from information I've been gathering.
Linda
-
- November 16, 2011 at 10:10 pm
Even FDA approved drugs only give a slim (20%) chance of the drugs to work. If you have no evidence to see if the drug works many are just becoming your body even more toxic. Some of the drugs will work for a short amount of time, if you really don't need the drug at the time what will you do when you need this drug?
There are so many inconsistencies because we haven't found the answer…… A drug that passes through the brain is even less, but the chance for SRS, Gamma knife or crainectomy, if only one or two tumors actually is better a chance than systemic treatments.
Just a different opinion from information I've been gathering.
Linda
-
- November 16, 2011 at 10:10 pm
Even FDA approved drugs only give a slim (20%) chance of the drugs to work. If you have no evidence to see if the drug works many are just becoming your body even more toxic. Some of the drugs will work for a short amount of time, if you really don't need the drug at the time what will you do when you need this drug?
There are so many inconsistencies because we haven't found the answer…… A drug that passes through the brain is even less, but the chance for SRS, Gamma knife or crainectomy, if only one or two tumors actually is better a chance than systemic treatments.
Just a different opinion from information I've been gathering.
Linda
-
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