› Forums › General Melanoma Community › A-Typical Can be a Good Thing :) – Stage IV & 28 Brain Mets
- This topic has 18 replies, 5 voices, and was last updated 7 years, 8 months ago by
keepthefaith11.
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- August 18, 2016 at 7:13 pm
It's three month shy of 3 years, but my Mom, at 80, just got the approval to get her commercial drivers license back! She is ecstatic!
Her doctor's all call her a miracle considering the stage and number of brain mets, which totaled 28, including a craniotomy for a recurrence. She has had no cognitive issues and is certainly A-Typical because of her outcomes thus far and her remarkable strength and resilience. – She acts like a 50 or 60 year old and has been dying to get back to driving for a local tour coach company she use to work for. – Staying home or taking it easy it too boring for her!
Hopefully one day everyone will have these results. In the meantime, this gives others in this situation some good news from a Stage IV survivor.
History:
At 77 she was diagnosed with Stage IV and then brain mets, which had been missed!?! She had gamma knife radiation for 8 of 9 brain mets, they missed one !?!, followed by Yervoy 4 days later. She had amazing results, are related to the abscopal effect from gamma knife radiation. However, still had to deal with 17 more brain mets 4 months later with gamma knife treatment again, a reoccurrence about 16 months later which needed a craniotomy and then another brain met 1 month later. She's been on Keytruda for 1 treatment shy of one year, and they can't find any signs of cancer in her brain and most of the remnants from treatment are gone. – Her last CT scan showed 2 or 3 small smudges in internal organs… Everything else is gone and other than the brain mets nothing else has ever shown up.
My Mom is being treated at USC in Los Angeles. Her team has been awesome and I doubt that anyone, but Dr. Eric Chang and his team, could have done a better job with treating her brain mets without any cognitive issues to date. – He was called in 4 months AFTER her first gamma knife treatment because we were told she had 1 new brain met. We found out that not only had the first team MISSED a brain met, but that she didn't have just 1 new brain met, but at minimum 5 in her prefrontal alone. We had been told to watch and wait by the first team and I can't imagine what would have happened if we had done that. With certainty my Mom would be in the same position now if we had followed those instructions. – It pays to get second and even third opinions.
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- August 19, 2016 at 12:38 am
Hi Patina – Such great news for your Mom – and so heartwarming!! Please extend my congratulations to her!!
Best thoughts and wishes always!!
Barb
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- August 19, 2016 at 12:38 am
Hi Patina – Such great news for your Mom – and so heartwarming!! Please extend my congratulations to her!!
Best thoughts and wishes always!!
Barb
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- August 19, 2016 at 12:38 am
Hi Patina – Such great news for your Mom – and so heartwarming!! Please extend my congratulations to her!!
Best thoughts and wishes always!!
Barb
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- August 19, 2016 at 2:18 pm
Patina, thank you for posting this. It is very inspiring to read since my father was diagnosed with 13 brain Mets. Since she had more brain lesions 4 months after starting Yervoy, do you think that Yervoy did not work? Also, how long after she was diagnosed with brain Mets did she start Keytruda?My dad just had another body scan and there is no evidence of spread anywhere but the brain. They will do a brain scan within two weeks to determine how well the whole brain radiation worked. After that the plan is to get him on Opdivo immediately. There has also been talk of doing SRS on any brain Mets that might be left. I am kind of liking this idea because if they do SRS they could immediately start Opdivo after SRS and therefore get the abscopal effect.
They will not start on the Braf Inhibitors unless there is a lot of out of control activity in the brain.
How does this sound to you?
Again, thank you for a very inspiring post!
Annie
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- August 19, 2016 at 2:18 pm
Patina, thank you for posting this. It is very inspiring to read since my father was diagnosed with 13 brain Mets. Since she had more brain lesions 4 months after starting Yervoy, do you think that Yervoy did not work? Also, how long after she was diagnosed with brain Mets did she start Keytruda?My dad just had another body scan and there is no evidence of spread anywhere but the brain. They will do a brain scan within two weeks to determine how well the whole brain radiation worked. After that the plan is to get him on Opdivo immediately. There has also been talk of doing SRS on any brain Mets that might be left. I am kind of liking this idea because if they do SRS they could immediately start Opdivo after SRS and therefore get the abscopal effect.
They will not start on the Braf Inhibitors unless there is a lot of out of control activity in the brain.
How does this sound to you?
Again, thank you for a very inspiring post!
Annie
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- August 19, 2016 at 2:18 pm
Patina, thank you for posting this. It is very inspiring to read since my father was diagnosed with 13 brain Mets. Since she had more brain lesions 4 months after starting Yervoy, do you think that Yervoy did not work? Also, how long after she was diagnosed with brain Mets did she start Keytruda?My dad just had another body scan and there is no evidence of spread anywhere but the brain. They will do a brain scan within two weeks to determine how well the whole brain radiation worked. After that the plan is to get him on Opdivo immediately. There has also been talk of doing SRS on any brain Mets that might be left. I am kind of liking this idea because if they do SRS they could immediately start Opdivo after SRS and therefore get the abscopal effect.
They will not start on the Braf Inhibitors unless there is a lot of out of control activity in the brain.
How does this sound to you?
Again, thank you for a very inspiring post!
Annie
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- August 19, 2016 at 11:42 pm
Hi Annie,
I have outlined her treatment below beginning with the SRS treatment to date.
Our plan from the beginning, once we found out about the first brain mets, was to do SRS followed by Yervoy very quickly and she had good results. This was due to a recent paper published on the abscopal effect that Dr. Wong had seen occur.
She developed colitis and thrush in January of 2014 and February, which took a while to clear up and we tried Yerovy once more, but she "failed" it after a week and never had her 4th infusion.
The radiation oncologist told me the morning of her first SRS treatment in 2013 that his team saw 9 tumors, but ruled one out as being a blood vessel and not a tumor. So only 8 tumors were treated. The one left untreated was a tumor ,not a blood vessel, and it went untreated for 4 months, which is one of the reasons I suspect that she had so many tumors later discovered when we we for a second opinion. – We has been told to just watch and see what was happening, in early April 2014, with 1 tumor in her prefrontal lobe by a neuro-oncologist. Upon hearing this the next day our oncologist sent her to Dr. Eric Chang. He looked at the MRI from December 2013 and April 2014 and said that one tumor was not only untreated, but she had at least 5 that needed treatment in her prefrontal lobe alone. – 8 days later she had SRS treatment for 17!
I understand that "Yervoy" seems to work "last" on brain mets and Keytruda seems to work on brain mets and others about the same time. Keytruda was not available to her in 2013, except by trial if they had accepted someone with brain mets.
I would opt for getting any mets treated ASAP and starting treatment within a week if possible. – A crainiotomy needs longer time to heal.
Good luck!
_____________________
December 2013 – SRS 8 of 9 brain mets
December 2013 4 days after SRS – 1st Yervoy Infusion
January 2014 – 2nd Yervoy Infusion
January – March – Issues with Colitis & Thurs
March 2014 – 3rd Yervoy Infusion
April (Mid) 2014 – 17 Brain Mets
June (late) 2015 – Crainiotomy for Reoccurance, Planned to Start Keytruda after 1 month. European vacation delayed this by 1 to 2 weeks.
August 2015 – New Brain Met Discovered week she was to start Keytruda
August 2015 – SRS for 1 brain met
September 2015 – Started Keytruda wil contiue every 3 weeks until Septermber of 2017
September 2015 to date – Doing great
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- August 19, 2016 at 11:42 pm
Hi Annie,
I have outlined her treatment below beginning with the SRS treatment to date.
Our plan from the beginning, once we found out about the first brain mets, was to do SRS followed by Yervoy very quickly and she had good results. This was due to a recent paper published on the abscopal effect that Dr. Wong had seen occur.
She developed colitis and thrush in January of 2014 and February, which took a while to clear up and we tried Yerovy once more, but she "failed" it after a week and never had her 4th infusion.
The radiation oncologist told me the morning of her first SRS treatment in 2013 that his team saw 9 tumors, but ruled one out as being a blood vessel and not a tumor. So only 8 tumors were treated. The one left untreated was a tumor ,not a blood vessel, and it went untreated for 4 months, which is one of the reasons I suspect that she had so many tumors later discovered when we we for a second opinion. – We has been told to just watch and see what was happening, in early April 2014, with 1 tumor in her prefrontal lobe by a neuro-oncologist. Upon hearing this the next day our oncologist sent her to Dr. Eric Chang. He looked at the MRI from December 2013 and April 2014 and said that one tumor was not only untreated, but she had at least 5 that needed treatment in her prefrontal lobe alone. – 8 days later she had SRS treatment for 17!
I understand that "Yervoy" seems to work "last" on brain mets and Keytruda seems to work on brain mets and others about the same time. Keytruda was not available to her in 2013, except by trial if they had accepted someone with brain mets.
I would opt for getting any mets treated ASAP and starting treatment within a week if possible. – A crainiotomy needs longer time to heal.
Good luck!
_____________________
December 2013 – SRS 8 of 9 brain mets
December 2013 4 days after SRS – 1st Yervoy Infusion
January 2014 – 2nd Yervoy Infusion
January – March – Issues with Colitis & Thurs
March 2014 – 3rd Yervoy Infusion
April (Mid) 2014 – 17 Brain Mets
June (late) 2015 – Crainiotomy for Reoccurance, Planned to Start Keytruda after 1 month. European vacation delayed this by 1 to 2 weeks.
August 2015 – New Brain Met Discovered week she was to start Keytruda
August 2015 – SRS for 1 brain met
September 2015 – Started Keytruda wil contiue every 3 weeks until Septermber of 2017
September 2015 to date – Doing great
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- August 20, 2016 at 12:23 pm
Thank you Patina. This is very helpful. My dad ended up having 2 Yervoy infusions before developing liver toxicity. At the time of discovery of the brain lesions it had been almost 4 months since the last infusion. A small part of me is hoping that maybe it had not had enough time to work in the brain and by now, in combination with the radiation he just had, it would have done something to the brain tumors. Maybe it should have worked within four months though? I don’t know. When he had the body scan and no tumors were found anywhere else in the body the doctor did mention that maybe the yervoy infusions had done its work there but not in the brain. To me that is not to say that it wouldn’t just take a little bit longer to get to the brain, and it might have had an effect there by now. Just wishful thinking I am sure.It is very encouraging to hear that she’s responded so well to Keytruda even after the Yervoy infusions. From reading about this brain met nightmare, it still seems somewhat encouraging that people can live with these and zap them as they pop up. My dad is feeling great, he is living his life exercising daily and has no symptoms whatsoever. I can only assume this is a good sign. He was in pretty bad shape there for a few days after the seizures.
Your mom is giving everyone with brain Mets hope! Thank you!
Annie
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- August 20, 2016 at 12:23 pm
Thank you Patina. This is very helpful. My dad ended up having 2 Yervoy infusions before developing liver toxicity. At the time of discovery of the brain lesions it had been almost 4 months since the last infusion. A small part of me is hoping that maybe it had not had enough time to work in the brain and by now, in combination with the radiation he just had, it would have done something to the brain tumors. Maybe it should have worked within four months though? I don’t know. When he had the body scan and no tumors were found anywhere else in the body the doctor did mention that maybe the yervoy infusions had done its work there but not in the brain. To me that is not to say that it wouldn’t just take a little bit longer to get to the brain, and it might have had an effect there by now. Just wishful thinking I am sure.It is very encouraging to hear that she’s responded so well to Keytruda even after the Yervoy infusions. From reading about this brain met nightmare, it still seems somewhat encouraging that people can live with these and zap them as they pop up. My dad is feeling great, he is living his life exercising daily and has no symptoms whatsoever. I can only assume this is a good sign. He was in pretty bad shape there for a few days after the seizures.
Your mom is giving everyone with brain Mets hope! Thank you!
Annie
-
- August 20, 2016 at 12:23 pm
Thank you Patina. This is very helpful. My dad ended up having 2 Yervoy infusions before developing liver toxicity. At the time of discovery of the brain lesions it had been almost 4 months since the last infusion. A small part of me is hoping that maybe it had not had enough time to work in the brain and by now, in combination with the radiation he just had, it would have done something to the brain tumors. Maybe it should have worked within four months though? I don’t know. When he had the body scan and no tumors were found anywhere else in the body the doctor did mention that maybe the yervoy infusions had done its work there but not in the brain. To me that is not to say that it wouldn’t just take a little bit longer to get to the brain, and it might have had an effect there by now. Just wishful thinking I am sure.It is very encouraging to hear that she’s responded so well to Keytruda even after the Yervoy infusions. From reading about this brain met nightmare, it still seems somewhat encouraging that people can live with these and zap them as they pop up. My dad is feeling great, he is living his life exercising daily and has no symptoms whatsoever. I can only assume this is a good sign. He was in pretty bad shape there for a few days after the seizures.
Your mom is giving everyone with brain Mets hope! Thank you!
Annie
-
- August 19, 2016 at 11:42 pm
Hi Annie,
I have outlined her treatment below beginning with the SRS treatment to date.
Our plan from the beginning, once we found out about the first brain mets, was to do SRS followed by Yervoy very quickly and she had good results. This was due to a recent paper published on the abscopal effect that Dr. Wong had seen occur.
She developed colitis and thrush in January of 2014 and February, which took a while to clear up and we tried Yerovy once more, but she "failed" it after a week and never had her 4th infusion.
The radiation oncologist told me the morning of her first SRS treatment in 2013 that his team saw 9 tumors, but ruled one out as being a blood vessel and not a tumor. So only 8 tumors were treated. The one left untreated was a tumor ,not a blood vessel, and it went untreated for 4 months, which is one of the reasons I suspect that she had so many tumors later discovered when we we for a second opinion. – We has been told to just watch and see what was happening, in early April 2014, with 1 tumor in her prefrontal lobe by a neuro-oncologist. Upon hearing this the next day our oncologist sent her to Dr. Eric Chang. He looked at the MRI from December 2013 and April 2014 and said that one tumor was not only untreated, but she had at least 5 that needed treatment in her prefrontal lobe alone. – 8 days later she had SRS treatment for 17!
I understand that "Yervoy" seems to work "last" on brain mets and Keytruda seems to work on brain mets and others about the same time. Keytruda was not available to her in 2013, except by trial if they had accepted someone with brain mets.
I would opt for getting any mets treated ASAP and starting treatment within a week if possible. – A crainiotomy needs longer time to heal.
Good luck!
_____________________
December 2013 – SRS 8 of 9 brain mets
December 2013 4 days after SRS – 1st Yervoy Infusion
January 2014 – 2nd Yervoy Infusion
January – March – Issues with Colitis & Thurs
March 2014 – 3rd Yervoy Infusion
April (Mid) 2014 – 17 Brain Mets
June (late) 2015 – Crainiotomy for Reoccurance, Planned to Start Keytruda after 1 month. European vacation delayed this by 1 to 2 weeks.
August 2015 – New Brain Met Discovered week she was to start Keytruda
August 2015 – SRS for 1 brain met
September 2015 – Started Keytruda wil contiue every 3 weeks until Septermber of 2017
September 2015 to date – Doing great
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