melanoma with brain mets

Welcome to the site, and I'm sorry that you have to be here. I am Stage 4, and although I do not have brain mets, there are many here that do. Be patient, they will respond. There are many good responses to brain mets from the latest treatments for melanoma. There are also many sad stories to tell. This site helped me through many stresful and depressing times, as thewre are quite a few of us long-term (late stage) survivors here. The number one thing that I can tell you is to make sure your husband goes to a melanoma specialist, not just an oncologist. There have been tremndous advancements in the treatment of melanoma in the last couple years and it's important to have a specialist that is up to date on the treatments. 

Welcome to the site, and I'm sorry that you have to be here. I am Stage 4, and although I do not have brain mets, there are many here that do. Be patient, they will respond. There are many good responses to brain mets from the latest treatments for melanoma. There are also many sad stories to tell. This site helped me through many stresful and depressing times, as thewre are quite a few of us long-term (late stage) survivors here. The number one thing that I can tell you is to make sure your husband goes to a melanoma specialist, not just an oncologist. There have been tremndous advancements in the treatment of melanoma in the last couple years and it's important to have a specialist that is up to date on the treatments. 

Welcome to the site, and I'm sorry that you have to be here. I am Stage 4, and although I do not have brain mets, there are many here that do. Be patient, they will respond. There are many good responses to brain mets from the latest treatments for melanoma. There are also many sad stories to tell. This site helped me through many stresful and depressing times, as thewre are quite a few of us long-term (late stage) survivors here. The number one thing that I can tell you is to make sure your husband goes to a melanoma specialist, not just an oncologist. There have been tremndous advancements in the treatment of melanoma in the last couple years and it's important to have a specialist that is up to date on the treatments. 

So my news is good!!!!  I'm also stage four.  I had a chestnut size brain tumor removed on February 22, 2013 and I'm still here!  The tumor was able to be removed and then I had Stereotactic Radio Surgery…strong beams of radiation to the sight of the tumor.  Other tumors were found in my body but after one year of Keytruda infusions, I'm doing well.  While some lesions still show up on a PET scan, none are active cancer.  I'm off Keytruda for now and time will tell!

I hope your husband is going to an oncologist who specializes in melanoma.  That's imperative!

Best wishes to you and please keep us posted.

Terrie

So my news is good!!!!  I'm also stage four.  I had a chestnut size brain tumor removed on February 22, 2013 and I'm still here!  The tumor was able to be removed and then I had Stereotactic Radio Surgery…strong beams of radiation to the sight of the tumor.  Other tumors were found in my body but after one year of Keytruda infusions, I'm doing well.  While some lesions still show up on a PET scan, none are active cancer.  I'm off Keytruda for now and time will tell!

I hope your husband is going to an oncologist who specializes in melanoma.  That's imperative!

Best wishes to you and please keep us posted.

Terrie

So my news is good!!!!  I'm also stage four.  I had a chestnut size brain tumor removed on February 22, 2013 and I'm still here!  The tumor was able to be removed and then I had Stereotactic Radio Surgery…strong beams of radiation to the sight of the tumor.  Other tumors were found in my body but after one year of Keytruda infusions, I'm doing well.  While some lesions still show up on a PET scan, none are active cancer.  I'm off Keytruda for now and time will tell!

I hope your husband is going to an oncologist who specializes in melanoma.  That's imperative!

Best wishes to you and please keep us posted.

Terrie

Hi, my husband also has mets in his brain, as well as tumors throughout his body. Is he under treatment yet? If not, I would recommend getting treatment ASAP, also look for clinical trials. Be aggressive about it, this disease can move fast. Luckily there are some new treatments that are relatively effective. 

Hi, my husband also has mets in his brain, as well as tumors throughout his body. Is he under treatment yet? If not, I would recommend getting treatment ASAP, also look for clinical trials. Be aggressive about it, this disease can move fast. Luckily there are some new treatments that are relatively effective. 

Hi, my husband also has mets in his brain, as well as tumors throughout his body. Is he under treatment yet? If not, I would recommend getting treatment ASAP, also look for clinical trials. Be aggressive about it, this disease can move fast. Luckily there are some new treatments that are relatively effective. 

My melanoma progressed to the brain, lung, liver, gall bladder and adrenal gland.

Two Cyberknifes and two craniotomy and still had some melanoma in brain.

Opdivo/ippilumumab trial started Jan. 2012. I have been NED for three years.

My melanoma progressed to the brain, lung, liver, gall bladder and adrenal gland.

Two Cyberknifes and two craniotomy and still had some melanoma in brain.

Opdivo/ippilumumab trial started Jan. 2012. I have been NED for three years.

My melanoma progressed to the brain, lung, liver, gall bladder and adrenal gland.

Two Cyberknifes and two craniotomy and still had some melanoma in brain.

Opdivo/ippilumumab trial started Jan. 2012. I have been NED for three years.

Sorry for what you and your husband are facing.  However, there are many of us on this forum still alive and kicking after melanoma brain mets.  I had a brain met treated with SRS (stereotactic radiation) followed by a 2 1/2 year trial of Nivolumab (Opdivo) in 2010.  I have been met free ever since.  We are learning more and more that immunotherapies (Ipilimumab/Yervoy and the two anti-PD1 products Nivo/Opdivo and Pembro/Keytruda) as well as BRAF inhibitors for patients who are BRAF positive DO have effects in the brain.  We have also learned that results can be even better when those therapies are used in conjunction with targeted radiation to the brain met.  Surgery is sometimes deemed better with brain mets due to their size or location.  I urge you to have your husband seen by a melanoma specialist. Melanoma doesn't behave like other cancers and treatments have changed radically in just the past 4 years. 

Here is a link to a post with varied information regarding melanoma brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

Hope this helps.  I wish you and your husband my best.  Celeste

Sorry for what you and your husband are facing.  However, there are many of us on this forum still alive and kicking after melanoma brain mets.  I had a brain met treated with SRS (stereotactic radiation) followed by a 2 1/2 year trial of Nivolumab (Opdivo) in 2010.  I have been met free ever since.  We are learning more and more that immunotherapies (Ipilimumab/Yervoy and the two anti-PD1 products Nivo/Opdivo and Pembro/Keytruda) as well as BRAF inhibitors for patients who are BRAF positive DO have effects in the brain.  We have also learned that results can be even better when those therapies are used in conjunction with targeted radiation to the brain met.  Surgery is sometimes deemed better with brain mets due to their size or location.  I urge you to have your husband seen by a melanoma specialist. Melanoma doesn't behave like other cancers and treatments have changed radically in just the past 4 years. 

Here is a link to a post with varied information regarding melanoma brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

Hope this helps.  I wish you and your husband my best.  Celeste

Sorry for what you and your husband are facing.  However, there are many of us on this forum still alive and kicking after melanoma brain mets.  I had a brain met treated with SRS (stereotactic radiation) followed by a 2 1/2 year trial of Nivolumab (Opdivo) in 2010.  I have been met free ever since.  We are learning more and more that immunotherapies (Ipilimumab/Yervoy and the two anti-PD1 products Nivo/Opdivo and Pembro/Keytruda) as well as BRAF inhibitors for patients who are BRAF positive DO have effects in the brain.  We have also learned that results can be even better when those therapies are used in conjunction with targeted radiation to the brain met.  Surgery is sometimes deemed better with brain mets due to their size or location.  I urge you to have your husband seen by a melanoma specialist. Melanoma doesn't behave like other cancers and treatments have changed radically in just the past 4 years. 

Here is a link to a post with varied information regarding melanoma brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

Hope this helps.  I wish you and your husband my best.  Celeste

My Mom (now 79, then 77) was diagnosed 2 years ago at the beginning of November with Stage IV.  Her is her very long story….

She had tumors all over her scalp (~18) or so, 1 on her neck, 6 tumors between her: lungs, kidney, adrenal gland and liver. About 3 weeks after her Stage IV diagnosis we found out that the radiologist who read her brain MRI totally MISSED 3 brain mets!  

We had gone to see a top melanoma specialist in Southern California, a doctor at UCLA and then a 3rd (Dr. Peter Bosaberg at The Angeles Clinic).  Dr. Bosaberg was the only one who looked at the MRI. The other two just read the report and assumed my Mom's brain was clear…  – I always recommend getting a 2nd or 3rd opinion now and making sure they look at the scans and not just the reports, besides being a melanoma specialist….

Since we had been trying to get her into a trial then she had been tested to see if she was BRAF + or PD1 +, but because of the brain mets she could not be in a trial. -We found out later that she was BRAF and PD1 +.

She was immediately scheduled to see a radiation oncologist who recommended gamma knife radiation (aka SRS) treatment for the brain mets. – NOT whole brain radiation. -This was preformed on 12/9/13. She had 9 brain tumors by the day of surgery. 8 were treated. 1 was missed. The doctor thought it was a blood vessel.  – We only found out that this was a tumor 4 months later when she was diagnosed with 16 MORE.  I kick myself for not asking for a second opinion then!

Because she had brain mets we sought out a 4th opinon at USC/Norris Comprehensive Cancer Center in Los Angeles. Dr. Mike Wong, a melanoma specialist, is her treating physcian. This was just before the first SRS treatment.  Between the advice we received from Dr. Bosaberg and Dr. Wong we were looking two options: SRS followed quickly by Yervoy OR SRS followed by BRAF pills. The SRS followed by Yervoy showed that patients got a additive effect in treatment.  While SRS followed by BRAF pills might keep the progression at bay until we could get my Mom on anther treatment – Keytruda was close to being approved.  We decided to keep the BRAF pills in our back pocket in case Yervoy didn't work….

We choose to have her do SRS treatment followed by Yervoy and she is treated by Dr. Mike Wong at USC.  She started Yervoy on day 4 after her SRS treatment.  The tumors under her scalp started hardening and tingling within days of her first treatment. By the time she was suppose to get her 3rd treatment she had colitis and could not get the infusion then. However, by then the tumor on her neck was gone as were some on her scalp or they were much smaller.  The SRS and Yervoy were really working on her.

Because of the brain mets we worked to get the colitis under control and she had a 3rd infusion of Yervoy 2 months later.  She had to be put on steroids though a week later and could not have her 4th infusion because it was so bad.  By then we found out that she had "a" new tumor in her brain that was large. We were told this by the neuro-oncologist that we should watch and see what happens rather than do gamma knife radiation.  – Quick note here to say that we were NEVER told to follow up again with the radiation oncologist who preformed the SRS treatment other than the 30 day followup. He referred us to the neuro-oncologist and we never saw him again. We should have been seeing him the whole time when we saw the neruro-oncologist… When he found out about the new brain mets he wanted to preform the 2nd SRS treatments…

I was concerned about that advice to watch and wait for 2 months…and followed up with Dr. Wong.  The next day we saw him due to the colitis and had an emergency consult with Dr. Eric Chang at USC.  After looking at all the records (I carried all the MRIs with me) and getting the plan and MRI from the day of the SRS treatment he said that the tumor that we were told was a blood vessel wasn't AND that my Mom had at least 5 operable tumors in her pre-frontal lobe.  Talk about a surprise! She was scheduled for a new round of SRS treatment 8 days later.  The day of the treatment she had 17 brain mets treated.

Immunotherapies like Yervoy turn on T-cells and they pass through the blood brain barrier and our hope had been that once Yervoy worked on her tumors elsewhere that it could keep the ones in her brain at bay and prevent new ones.  Once this last SRS and Yervoy treatments were over it was wait and see what happened…. 

Things were under control, shrinking or stable for almost 1 year.  All the tumors on her scalp and neck were gone. The tumors in her lungs, kidney, adrenal gland and liver were all smaller and they were not seeing any new issues with new brain mets.

Then they found a reoccurrence 🙁  She ended up with a craniotomy in June of this year and just as she was suppose to start Keytruda they found a new brain met. (I think the new one, because of where it was, was likely caused by the reoccurrence.) Another SRS treatment was preformed for my Mom. Making it 26 brain mets treated with SRS and 1 removed by craniotomy. She's now on Keytruda for at least 1 year. 

You might think with all of this that she might have had cognitive issues or been really wiped out from the treatment. This has not been the issue for her at all. When she had the colitis that was bad, but she developed thrush and has always said that thrush was going to be the thing that killed her because it was so bad…  

She's been really active for the vast majority of treatment and had done so well we really thought she would end up with NED (no evidence of disease) until the reoccurrence…  She's been able to start driving (you need to get re-certified after SRS treatment by the DMV to drive) and is very active on her little farm and going on trips with her sister.  

Right now, we are in a wait and see mode with the Keytruda as she's only had 2 treatments, but we are hopeful that this will keep the cancer at bay…

My advice to you:

– Get 2nd opinions with melanoma specialists and learn what they recommend and why. Don't see someone who is just a oncologist. You want someone who specializes in melanoma, it is tricky…

– Find the BEST radiation oncologist and neuro-oncologist you can find.  IF all of these people are under the same roof this is the best way to go I feel. Our experience, and her treatment, has been best when these doctors work together, as we've found that talk together and we don't need to inform them of what is going on.

– Ask questions and do research on what the doctor is recommending.

– Research the recommendations. Ask questions here and read what you can about new treatments.

– Record what the doctors say if this is stressful so you can replay recommendations later.

– There is a additive effect between Yervoy and SRS treatment. Whole brain radiation may not be the best way to go. Ask your radiation oncologist about this.

– DON"T let anyone tell you to watch brain mets. Get these treated.

– Be an advocate and inquisitive or find someone who can be.

– Watch for side effects. Don't let your husband hide them.  This is how my Mom "failed" Yervoy. She can't take this again due to colitis. 

– Communicate with his doctors. Have a plan to communicate between appointments and know what to do inadvance.  Email followed by phone calls worked well for us…

– Look into clinical trials. 

– We've found the best doctors at a teaching hospital that is also a center of excelelnce for melanma. 

My Mom (now 79, then 77) was diagnosed 2 years ago at the beginning of November with Stage IV.  Her is her very long story….

She had tumors all over her scalp (~18) or so, 1 on her neck, 6 tumors between her: lungs, kidney, adrenal gland and liver. About 3 weeks after her Stage IV diagnosis we found out that the radiologist who read her brain MRI totally MISSED 3 brain mets!  

We had gone to see a top melanoma specialist in Southern California, a doctor at UCLA and then a 3rd (Dr. Peter Bosaberg at The Angeles Clinic).  Dr. Bosaberg was the only one who looked at the MRI. The other two just read the report and assumed my Mom's brain was clear…  – I always recommend getting a 2nd or 3rd opinion now and making sure they look at the scans and not just the reports, besides being a melanoma specialist….

Since we had been trying to get her into a trial then she had been tested to see if she was BRAF + or PD1 +, but because of the brain mets she could not be in a trial. -We found out later that she was BRAF and PD1 +.

She was immediately scheduled to see a radiation oncologist who recommended gamma knife radiation (aka SRS) treatment for the brain mets. – NOT whole brain radiation. -This was preformed on 12/9/13. She had 9 brain tumors by the day of surgery. 8 were treated. 1 was missed. The doctor thought it was a blood vessel.  – We only found out that this was a tumor 4 months later when she was diagnosed with 16 MORE.  I kick myself for not asking for a second opinion then!

Because she had brain mets we sought out a 4th opinon at USC/Norris Comprehensive Cancer Center in Los Angeles. Dr. Mike Wong, a melanoma specialist, is her treating physcian. This was just before the first SRS treatment.  Between the advice we received from Dr. Bosaberg and Dr. Wong we were looking two options: SRS followed quickly by Yervoy OR SRS followed by BRAF pills. The SRS followed by Yervoy showed that patients got a additive effect in treatment.  While SRS followed by BRAF pills might keep the progression at bay until we could get my Mom on anther treatment – Keytruda was close to being approved.  We decided to keep the BRAF pills in our back pocket in case Yervoy didn't work….

We choose to have her do SRS treatment followed by Yervoy and she is treated by Dr. Mike Wong at USC.  She started Yervoy on day 4 after her SRS treatment.  The tumors under her scalp started hardening and tingling within days of her first treatment. By the time she was suppose to get her 3rd treatment she had colitis and could not get the infusion then. However, by then the tumor on her neck was gone as were some on her scalp or they were much smaller.  The SRS and Yervoy were really working on her.

Because of the brain mets we worked to get the colitis under control and she had a 3rd infusion of Yervoy 2 months later.  She had to be put on steroids though a week later and could not have her 4th infusion because it was so bad.  By then we found out that she had "a" new tumor in her brain that was large. We were told this by the neuro-oncologist that we should watch and see what happens rather than do gamma knife radiation.  – Quick note here to say that we were NEVER told to follow up again with the radiation oncologist who preformed the SRS treatment other than the 30 day followup. He referred us to the neuro-oncologist and we never saw him again. We should have been seeing him the whole time when we saw the neruro-oncologist… When he found out about the new brain mets he wanted to preform the 2nd SRS treatments…

I was concerned about that advice to watch and wait for 2 months…and followed up with Dr. Wong.  The next day we saw him due to the colitis and had an emergency consult with Dr. Eric Chang at USC.  After looking at all the records (I carried all the MRIs with me) and getting the plan and MRI from the day of the SRS treatment he said that the tumor that we were told was a blood vessel wasn't AND that my Mom had at least 5 operable tumors in her pre-frontal lobe.  Talk about a surprise! She was scheduled for a new round of SRS treatment 8 days later.  The day of the treatment she had 17 brain mets treated.

Immunotherapies like Yervoy turn on T-cells and they pass through the blood brain barrier and our hope had been that once Yervoy worked on her tumors elsewhere that it could keep the ones in her brain at bay and prevent new ones.  Once this last SRS and Yervoy treatments were over it was wait and see what happened…. 

Things were under control, shrinking or stable for almost 1 year.  All the tumors on her scalp and neck were gone. The tumors in her lungs, kidney, adrenal gland and liver were all smaller and they were not seeing any new issues with new brain mets.

Then they found a reoccurrence 🙁  She ended up with a craniotomy in June of this year and just as she was suppose to start Keytruda they found a new brain met. (I think the new one, because of where it was, was likely caused by the reoccurrence.) Another SRS treatment was preformed for my Mom. Making it 26 brain mets treated with SRS and 1 removed by craniotomy. She's now on Keytruda for at least 1 year. 

You might think with all of this that she might have had cognitive issues or been really wiped out from the treatment. This has not been the issue for her at all. When she had the colitis that was bad, but she developed thrush and has always said that thrush was going to be the thing that killed her because it was so bad…  

She's been really active for the vast majority of treatment and had done so well we really thought she would end up with NED (no evidence of disease) until the reoccurrence…  She's been able to start driving (you need to get re-certified after SRS treatment by the DMV to drive) and is very active on her little farm and going on trips with her sister.  

Right now, we are in a wait and see mode with the Keytruda as she's only had 2 treatments, but we are hopeful that this will keep the cancer at bay…

My advice to you:

– Get 2nd opinions with melanoma specialists and learn what they recommend and why. Don't see someone who is just a oncologist. You want someone who specializes in melanoma, it is tricky…

– Find the BEST radiation oncologist and neuro-oncologist you can find.  IF all of these people are under the same roof this is the best way to go I feel. Our experience, and her treatment, has been best when these doctors work together, as we've found that talk together and we don't need to inform them of what is going on.

– Ask questions and do research on what the doctor is recommending.

– Research the recommendations. Ask questions here and read what you can about new treatments.

– Record what the doctors say if this is stressful so you can replay recommendations later.

– There is a additive effect between Yervoy and SRS treatment. Whole brain radiation may not be the best way to go. Ask your radiation oncologist about this.

– DON"T let anyone tell you to watch brain mets. Get these treated.

– Be an advocate and inquisitive or find someone who can be.

– Watch for side effects. Don't let your husband hide them.  This is how my Mom "failed" Yervoy. She can't take this again due to colitis. 

– Communicate with his doctors. Have a plan to communicate between appointments and know what to do inadvance.  Email followed by phone calls worked well for us…

– Look into clinical trials. 

– We've found the best doctors at a teaching hospital that is also a center of excelelnce for melanma. 

My Mom (now 79, then 77) was diagnosed 2 years ago at the beginning of November with Stage IV.  Her is her very long story….

She had tumors all over her scalp (~18) or so, 1 on her neck, 6 tumors between her: lungs, kidney, adrenal gland and liver. About 3 weeks after her Stage IV diagnosis we found out that the radiologist who read her brain MRI totally MISSED 3 brain mets!  

We had gone to see a top melanoma specialist in Southern California, a doctor at UCLA and then a 3rd (Dr. Peter Bosaberg at The Angeles Clinic).  Dr. Bosaberg was the only one who looked at the MRI. The other two just read the report and assumed my Mom's brain was clear…  – I always recommend getting a 2nd or 3rd opinion now and making sure they look at the scans and not just the reports, besides being a melanoma specialist….

Since we had been trying to get her into a trial then she had been tested to see if she was BRAF + or PD1 +, but because of the brain mets she could not be in a trial. -We found out later that she was BRAF and PD1 +.

She was immediately scheduled to see a radiation oncologist who recommended gamma knife radiation (aka SRS) treatment for the brain mets. – NOT whole brain radiation. -This was preformed on 12/9/13. She had 9 brain tumors by the day of surgery. 8 were treated. 1 was missed. The doctor thought it was a blood vessel.  – We only found out that this was a tumor 4 months later when she was diagnosed with 16 MORE.  I kick myself for not asking for a second opinion then!

Because she had brain mets we sought out a 4th opinon at USC/Norris Comprehensive Cancer Center in Los Angeles. Dr. Mike Wong, a melanoma specialist, is her treating physcian. This was just before the first SRS treatment.  Between the advice we received from Dr. Bosaberg and Dr. Wong we were looking two options: SRS followed quickly by Yervoy OR SRS followed by BRAF pills. The SRS followed by Yervoy showed that patients got a additive effect in treatment.  While SRS followed by BRAF pills might keep the progression at bay until we could get my Mom on anther treatment – Keytruda was close to being approved.  We decided to keep the BRAF pills in our back pocket in case Yervoy didn't work….

We choose to have her do SRS treatment followed by Yervoy and she is treated by Dr. Mike Wong at USC.  She started Yervoy on day 4 after her SRS treatment.  The tumors under her scalp started hardening and tingling within days of her first treatment. By the time she was suppose to get her 3rd treatment she had colitis and could not get the infusion then. However, by then the tumor on her neck was gone as were some on her scalp or they were much smaller.  The SRS and Yervoy were really working on her.

Because of the brain mets we worked to get the colitis under control and she had a 3rd infusion of Yervoy 2 months later.  She had to be put on steroids though a week later and could not have her 4th infusion because it was so bad.  By then we found out that she had "a" new tumor in her brain that was large. We were told this by the neuro-oncologist that we should watch and see what happens rather than do gamma knife radiation.  – Quick note here to say that we were NEVER told to follow up again with the radiation oncologist who preformed the SRS treatment other than the 30 day followup. He referred us to the neuro-oncologist and we never saw him again. We should have been seeing him the whole time when we saw the neruro-oncologist… When he found out about the new brain mets he wanted to preform the 2nd SRS treatments…

I was concerned about that advice to watch and wait for 2 months…and followed up with Dr. Wong.  The next day we saw him due to the colitis and had an emergency consult with Dr. Eric Chang at USC.  After looking at all the records (I carried all the MRIs with me) and getting the plan and MRI from the day of the SRS treatment he said that the tumor that we were told was a blood vessel wasn't AND that my Mom had at least 5 operable tumors in her pre-frontal lobe.  Talk about a surprise! She was scheduled for a new round of SRS treatment 8 days later.  The day of the treatment she had 17 brain mets treated.

Immunotherapies like Yervoy turn on T-cells and they pass through the blood brain barrier and our hope had been that once Yervoy worked on her tumors elsewhere that it could keep the ones in her brain at bay and prevent new ones.  Once this last SRS and Yervoy treatments were over it was wait and see what happened…. 

Things were under control, shrinking or stable for almost 1 year.  All the tumors on her scalp and neck were gone. The tumors in her lungs, kidney, adrenal gland and liver were all smaller and they were not seeing any new issues with new brain mets.

Then they found a reoccurrence 🙁  She ended up with a craniotomy in June of this year and just as she was suppose to start Keytruda they found a new brain met. (I think the new one, because of where it was, was likely caused by the reoccurrence.) Another SRS treatment was preformed for my Mom. Making it 26 brain mets treated with SRS and 1 removed by craniotomy. She's now on Keytruda for at least 1 year. 

You might think with all of this that she might have had cognitive issues or been really wiped out from the treatment. This has not been the issue for her at all. When she had the colitis that was bad, but she developed thrush and has always said that thrush was going to be the thing that killed her because it was so bad…  

She's been really active for the vast majority of treatment and had done so well we really thought she would end up with NED (no evidence of disease) until the reoccurrence…  She's been able to start driving (you need to get re-certified after SRS treatment by the DMV to drive) and is very active on her little farm and going on trips with her sister.  

Right now, we are in a wait and see mode with the Keytruda as she's only had 2 treatments, but we are hopeful that this will keep the cancer at bay…

My advice to you:

– Get 2nd opinions with melanoma specialists and learn what they recommend and why. Don't see someone who is just a oncologist. You want someone who specializes in melanoma, it is tricky…

– Find the BEST radiation oncologist and neuro-oncologist you can find.  IF all of these people are under the same roof this is the best way to go I feel. Our experience, and her treatment, has been best when these doctors work together, as we've found that talk together and we don't need to inform them of what is going on.

– Ask questions and do research on what the doctor is recommending.

– Research the recommendations. Ask questions here and read what you can about new treatments.

– Record what the doctors say if this is stressful so you can replay recommendations later.

– There is a additive effect between Yervoy and SRS treatment. Whole brain radiation may not be the best way to go. Ask your radiation oncologist about this.

– DON"T let anyone tell you to watch brain mets. Get these treated.

– Be an advocate and inquisitive or find someone who can be.

– Watch for side effects. Don't let your husband hide them.  This is how my Mom "failed" Yervoy. She can't take this again due to colitis. 

– Communicate with his doctors. Have a plan to communicate between appointments and know what to do inadvance.  Email followed by phone calls worked well for us…

– Look into clinical trials. 

– We've found the best doctors at a teaching hospital that is also a center of excelelnce for melanma. 

Jimmy Carter did. He got treated with gamma knife and keytruda. Other people on here have had them as well. Mine according to last scan is about 3x3cm but pressing on not in brain.

In my opinion your husband needs to get the treatment that carter did asap.

Artie

Jimmy Carter did. He got treated with gamma knife and keytruda. Other people on here have had them as well. Mine according to last scan is about 3x3cm but pressing on not in brain.

In my opinion your husband needs to get the treatment that carter did asap.

Artie

Jimmy Carter did. He got treated with gamma knife and keytruda. Other people on here have had them as well. Mine according to last scan is about 3x3cm but pressing on not in brain.

In my opinion your husband needs to get the treatment that carter did asap.

Artie

Hi – my husband was diagnosed 3.5 years ago at age 49 with brain mets and mets in other locations.  The brain mets have been treated with Gamma Knife.  He has been on several therapies and is currently stable and taking dabrafenib.  Is your husband scheduled for gamma knife for the brain mets?  The procedure is painless, except for the fitting of the head frame needed to keep his head from moving during the radiation treatment.  Take care.

Ann

Hi – my husband was diagnosed 3.5 years ago at age 49 with brain mets and mets in other locations.  The brain mets have been treated with Gamma Knife.  He has been on several therapies and is currently stable and taking dabrafenib.  Is your husband scheduled for gamma knife for the brain mets?  The procedure is painless, except for the fitting of the head frame needed to keep his head from moving during the radiation treatment.  Take care.

Ann

Hi – my husband was diagnosed 3.5 years ago at age 49 with brain mets and mets in other locations.  The brain mets have been treated with Gamma Knife.  He has been on several therapies and is currently stable and taking dabrafenib.  Is your husband scheduled for gamma knife for the brain mets?  The procedure is painless, except for the fitting of the head frame needed to keep his head from moving during the radiation treatment.  Take care.

Ann

Is your husband being seen by a melanoma specialist?  That is the #1 most important thing with this disease, as treatments and drugs are changing so rapidly.  There are lots of folks on this board that are living with stable Stage IV disease and others who are NED (No Evidence of Disease) so there is hope.  Just get him to a specialist before making any decisions on treatment!

Is your husband being seen by a melanoma specialist?  That is the #1 most important thing with this disease, as treatments and drugs are changing so rapidly.  There are lots of folks on this board that are living with stable Stage IV disease and others who are NED (No Evidence of Disease) so there is hope.  Just get him to a specialist before making any decisions on treatment!

Is your husband being seen by a melanoma specialist?  That is the #1 most important thing with this disease, as treatments and drugs are changing so rapidly.  There are lots of folks on this board that are living with stable Stage IV disease and others who are NED (No Evidence of Disease) so there is hope.  Just get him to a specialist before making any decisions on treatment!

Hi Anonymous, I had three small mets about 3 to 4 mm in size and was treated by Cyberknife at the Ottawa General 2 years ago. The treatment was easy( only lasted about 1 hour) and I was lucky not to have any swelling or bleeding after the fact. I have been on the BMS trial of Ipi or nivo or the combination for the last 22 months with no progression of my other tumors in my lung. My daughter just turned 7 and I have been able to enjoy life with my family these last 2 years. Wishing you the best!!!! Ed

Hi Anonymous, I had three small mets about 3 to 4 mm in size and was treated by Cyberknife at the Ottawa General 2 years ago. The treatment was easy( only lasted about 1 hour) and I was lucky not to have any swelling or bleeding after the fact. I have been on the BMS trial of Ipi or nivo or the combination for the last 22 months with no progression of my other tumors in my lung. My daughter just turned 7 and I have been able to enjoy life with my family these last 2 years. Wishing you the best!!!! Ed

Hi Anonymous, I had three small mets about 3 to 4 mm in size and was treated by Cyberknife at the Ottawa General 2 years ago. The treatment was easy( only lasted about 1 hour) and I was lucky not to have any swelling or bleeding after the fact. I have been on the BMS trial of Ipi or nivo or the combination for the last 22 months with no progression of my other tumors in my lung. My daughter just turned 7 and I have been able to enjoy life with my family these last 2 years. Wishing you the best!!!! Ed

So sorry your family is having to go through this.  There are many on this forum that have had brain mets and are now doing great.

There is a pretty good webinar on MIF that you may want to check out.  It's a couple years old but still very revelent. 

http://melanomainternational.org/events-webinar/past-webinars/#.ViBLszZdGhc

Recommend you seek out a melanoma specialist if you aren't already seeing one.

Hopefully you can zap these mets and get on a good treatment.  If it were me I'd be looking to get on a ipi/nivo combo or a Anti-PD1 drug.

Best of luck to you.

Brian

So sorry your family is having to go through this.  There are many on this forum that have had brain mets and are now doing great.

There is a pretty good webinar on MIF that you may want to check out.  It's a couple years old but still very revelent. 

http://melanomainternational.org/events-webinar/past-webinars/#.ViBLszZdGhc

Recommend you seek out a melanoma specialist if you aren't already seeing one.

Hopefully you can zap these mets and get on a good treatment.  If it were me I'd be looking to get on a ipi/nivo combo or a Anti-PD1 drug.

Best of luck to you.

Brian

So sorry your family is having to go through this.  There are many on this forum that have had brain mets and are now doing great.

There is a pretty good webinar on MIF that you may want to check out.  It's a couple years old but still very revelent. 

http://melanomainternational.org/events-webinar/past-webinars/#.ViBLszZdGhc

Recommend you seek out a melanoma specialist if you aren't already seeing one.

Hopefully you can zap these mets and get on a good treatment.  If it were me I'd be looking to get on a ipi/nivo combo or a Anti-PD1 drug.

Best of luck to you.

Brian

I have had 2 rounds of SRS spot brain radiation on a total of 10 tumors.

I wont lie it sucks….ut it killed thse tumors enough to get me started on other full systemic treatment.

I am on Keytruda #19 ext and have 2 mets in braain however is growing slowly. I was diagnosed stage 4 with bne ad brain mets in nov 2013.

i'm 45 year ld male.

I have had 2 rounds of SRS spot brain radiation on a total of 10 tumors.

I wont lie it sucks….ut it killed thse tumors enough to get me started on other full systemic treatment.

I am on Keytruda #19 ext and have 2 mets in braain however is growing slowly. I was diagnosed stage 4 with bne ad brain mets in nov 2013.

i'm 45 year ld male.

I have had 2 rounds of SRS spot brain radiation on a total of 10 tumors.

I wont lie it sucks….ut it killed thse tumors enough to get me started on other full systemic treatment.

I am on Keytruda #19 ext and have 2 mets in braain however is growing slowly. I was diagnosed stage 4 with bne ad brain mets in nov 2013.

i'm 45 year ld male.

I wanted to let you know that I replied a few days ago to your post. It was a pretty detailed response and I wish it had not been deleted or held for approval by the new spam filter. It was pretty good and had a lot more than this….

Anyway, my Mom has had 27 brain mets treated she's 79 now. You need to look into gamma knife radiation (aka SRS) and find a expert who has a lot of experience treating melanoma with SRS as well a good melanoma specialist. – My Mom has had a hack radiation oncologist who MISSED a tumor and EXPERT radiation oncologist who is amazing. You want to be sure you find the best for this and our first try ended up with what I believe is a huge number of new brain mets because of that fail. (16 new brain mets 4 months later when she was a supper responder with Yervoy.)

My Mom is now 79 and its been 2 years since she was diagnosed and the first diagnosis include a misdianosis. The radiation oncologist MISSED the brain tumors!.  For all the brain mets she's had she has had an amazingly good luck with the vast majority of cancer "gone", all tumors responding to Yervoy, and no cognitive issues whatsoever. For her everything responded very quickly. Weeks not months.

She did have a reoccurnce in June with one brain met and a craniotomy to remove it and then a "new" met was found so she needed to go on Keytruda because she can't take Yervoy again due to colitis, but its like she has never had cancer. She does anything she wants…

If you are in California go to USC/Norris Comprehensive Cancer Center in Los Angeles  and see Dr. Eric Chang, Dr. Mike Wong and Dr. Naveed Wagle. They are simply the best. If you are not in Southern California find the best (usually at teaching facilities and centers of excellence) and be suspicious of anyone who says to go for whole brain radiation or to watch brain mets.

I wanted to let you know that I replied a few days ago to your post. It was a pretty detailed response and I wish it had not been deleted or held for approval by the new spam filter. It was pretty good and had a lot more than this….

Anyway, my Mom has had 27 brain mets treated she's 79 now. You need to look into gamma knife radiation (aka SRS) and find a expert who has a lot of experience treating melanoma with SRS as well a good melanoma specialist. – My Mom has had a hack radiation oncologist who MISSED a tumor and EXPERT radiation oncologist who is amazing. You want to be sure you find the best for this and our first try ended up with what I believe is a huge number of new brain mets because of that fail. (16 new brain mets 4 months later when she was a supper responder with Yervoy.)

My Mom is now 79 and its been 2 years since she was diagnosed and the first diagnosis include a misdianosis. The radiation oncologist MISSED the brain tumors!.  For all the brain mets she's had she has had an amazingly good luck with the vast majority of cancer "gone", all tumors responding to Yervoy, and no cognitive issues whatsoever. For her everything responded very quickly. Weeks not months.

She did have a reoccurnce in June with one brain met and a craniotomy to remove it and then a "new" met was found so she needed to go on Keytruda because she can't take Yervoy again due to colitis, but its like she has never had cancer. She does anything she wants…

If you are in California go to USC/Norris Comprehensive Cancer Center in Los Angeles  and see Dr. Eric Chang, Dr. Mike Wong and Dr. Naveed Wagle. They are simply the best. If you are not in Southern California find the best (usually at teaching facilities and centers of excellence) and be suspicious of anyone who says to go for whole brain radiation or to watch brain mets.

I wanted to let you know that I replied a few days ago to your post. It was a pretty detailed response and I wish it had not been deleted or held for approval by the new spam filter. It was pretty good and had a lot more than this….

Anyway, my Mom has had 27 brain mets treated she's 79 now. You need to look into gamma knife radiation (aka SRS) and find a expert who has a lot of experience treating melanoma with SRS as well a good melanoma specialist. – My Mom has had a hack radiation oncologist who MISSED a tumor and EXPERT radiation oncologist who is amazing. You want to be sure you find the best for this and our first try ended up with what I believe is a huge number of new brain mets because of that fail. (16 new brain mets 4 months later when she was a supper responder with Yervoy.)

My Mom is now 79 and its been 2 years since she was diagnosed and the first diagnosis include a misdianosis. The radiation oncologist MISSED the brain tumors!.  For all the brain mets she's had she has had an amazingly good luck with the vast majority of cancer "gone", all tumors responding to Yervoy, and no cognitive issues whatsoever. For her everything responded very quickly. Weeks not months.

She did have a reoccurnce in June with one brain met and a craniotomy to remove it and then a "new" met was found so she needed to go on Keytruda because she can't take Yervoy again due to colitis, but its like she has never had cancer. She does anything she wants…

If you are in California go to USC/Norris Comprehensive Cancer Center in Los Angeles  and see Dr. Eric Chang, Dr. Mike Wong and Dr. Naveed Wagle. They are simply the best. If you are not in Southern California find the best (usually at teaching facilities and centers of excellence) and be suspicious of anyone who says to go for whole brain radiation or to watch brain mets.