My Husband Stage 4 what next?

The first thing anyone here will want to know is if your husbands doctor is a Melanoma Specialist or not.  – This is someone who treats many patients day in and day out at his/her clinic. Preferably this is someone who is a large cancer research facility…  Here is a good list from the Cancer.gov. – If he is not seeing a Specialist he needs to find one NOW. 

Even if he is seeing a Specialist I highly recommend a second and third opinion. Often times doctors will have different ideas for treatment and you need to be aware of this and be exposed to these options and thoughts during the appointments in order to make the right decision on treatment now and in the future.

The second thing that most people would recommend that you, or someone else, take on a active role to keep paperwork, appointment notes (record doctor appointments so you can listen later)… Be curious and ask lots of questions and do research… – This is a great place to ask questions.

The third thing that most people would tell you to do is to get CDs of all of his scans and all the paperwork done to date and keep this in a folder and take them with you to appointments…  Having these documents handy, especially for second and third opinions is very good to do. You also need to make sure that he has had a brain MRI and that one is done regularly. – 40% of melanoma patients end up with brain mets and you want to get these treated before he has any symptoms, which could be anything from a seizure, headaches, ringing in the ears, mobility or cognitive issues…

The fourth this is to keep track of any side effects your husband might have and know what the typical side effects are. You don't want to be caught of guard OR fail to act quickly. – My Mom got colitis with ipi/Yervoy (she is stubborn and didn't tell me what was going on). If we had known what was going on the colitis might not be been so bad. –  It could have killed her, it was that bad. But she will say that thrush or my driving was going to kill her.

I'm sorry to say that your husband has just started his fight and stopping the combo now will just mean that this is not working or working fast enough and that another drug is needed. Even if things look good now, or for a while, at some point the combo will stop working and another treatment will be needed.

Falling back to #2, be prepared to ask questions and be ready to research your options such as clinical trials, stereotactic body radiation therapy (SBRT), or stereotactic radiation therapy (SRS aka Gamma Knife Radiation), and immunotherapies. – Know what immunotherapies are out there, what your doctors recommend and be sure you are with someone you trust and who is very very experienced. (Ask about synergistic treatments too.)

My Mom get's treated at USC Norris Comprehensive Cancer Center in Los Angeles. I highly recommend this center. She had been treated at two different facilities at one point and we were lucky to have switched all of her treatment to one facility before something irreversible happened.  Here is my Mom's background:

She was diagnosed with Stage IV in November of 2013. She was misdiagnosed the first time and told she did NOT have brain mets. She had 3. 30 days from the first MRI she had gamma knife radiation and they got 8 of 9 brain mets treated. The radiation oncologist missed 1 and we had a horrible experience with the team treating her brain over the next 4 months. – They did not talk to each other and I just think they were incompetent based on what I know now.

The doctor treating everything (he was her 4th opinion and BEST!), but the brain had her on ipi/Yervoy 4 days after gamma knife radiation. (This was chosen because of the abscopal affects found with gamma knife radiation and ipi/Yervoy that showed greater response rates with two treatments given close together.)

4 months after gamma knife we were told that my Mom had a new brain met in the prefrontal lobe. It was large and the neuroncologist wasn't going to treat it.  – By then most of the other cancer had melted away and she was doing very very well… – We got a second opinion, moved all of her treatment to USC.  Long story short, she had 17 brain mets treated 8 days after that first doctor said we should just wait and see what happens… – Lucky for us that we sought that second opinion.

The picture I am trying to paint here is that you need to ask questions, know your options and never be afraid or reluctant to get another opinion. IF we had not done that in the beginning or the middle I doubt my Mom would be in the shape she is now. She is 80. Is almost NED (no evidence of disease). Has no issues and does whatever she wants… This would not have been the case if we hadn't continued to ask questions and simply stopped at the first doctor. If we had done that, my Mom would have moved forward with untreated brain mets for many months OR until she had symptoms or irreversible cognitive issues. 

Lastly, watch the mets with the liver.  I have been told that patients that have a lot or ongoing issues with more tumors in the liver don't have the best prognosis and you want to make sure that you keep an eye on this and you have the BEST doctor you can find for your husband.

Good Luck!

PS

My Mom was BRAF positive, but we started with ipi/Yervoy because of the abscopal affects. At the time Keytruda was not approved and we would have gone with the combo your husband is taking IF ipi/Yervoy did not work and if Keytruda was not yet approved and she had progression.

The first thing anyone here will want to know is if your husbands doctor is a Melanoma Specialist or not.  – This is someone who treats many patients day in and day out at his/her clinic. Preferably this is someone who is a large cancer research facility…  Here is a good list from the Cancer.gov. – If he is not seeing a Specialist he needs to find one NOW. 

Even if he is seeing a Specialist I highly recommend a second and third opinion. Often times doctors will have different ideas for treatment and you need to be aware of this and be exposed to these options and thoughts during the appointments in order to make the right decision on treatment now and in the future.

The second thing that most people would recommend that you, or someone else, take on a active role to keep paperwork, appointment notes (record doctor appointments so you can listen later)… Be curious and ask lots of questions and do research… – This is a great place to ask questions.

The third thing that most people would tell you to do is to get CDs of all of his scans and all the paperwork done to date and keep this in a folder and take them with you to appointments…  Having these documents handy, especially for second and third opinions is very good to do. You also need to make sure that he has had a brain MRI and that one is done regularly. – 40% of melanoma patients end up with brain mets and you want to get these treated before he has any symptoms, which could be anything from a seizure, headaches, ringing in the ears, mobility or cognitive issues…

The fourth this is to keep track of any side effects your husband might have and know what the typical side effects are. You don't want to be caught of guard OR fail to act quickly. – My Mom got colitis with ipi/Yervoy (she is stubborn and didn't tell me what was going on). If we had known what was going on the colitis might not be been so bad. –  It could have killed her, it was that bad. But she will say that thrush or my driving was going to kill her.

I'm sorry to say that your husband has just started his fight and stopping the combo now will just mean that this is not working or working fast enough and that another drug is needed. Even if things look good now, or for a while, at some point the combo will stop working and another treatment will be needed.

Falling back to #2, be prepared to ask questions and be ready to research your options such as clinical trials, stereotactic body radiation therapy (SBRT), or stereotactic radiation therapy (SRS aka Gamma Knife Radiation), and immunotherapies. – Know what immunotherapies are out there, what your doctors recommend and be sure you are with someone you trust and who is very very experienced. (Ask about synergistic treatments too.)

My Mom get's treated at USC Norris Comprehensive Cancer Center in Los Angeles. I highly recommend this center. She had been treated at two different facilities at one point and we were lucky to have switched all of her treatment to one facility before something irreversible happened.  Here is my Mom's background:

She was diagnosed with Stage IV in November of 2013. She was misdiagnosed the first time and told she did NOT have brain mets. She had 3. 30 days from the first MRI she had gamma knife radiation and they got 8 of 9 brain mets treated. The radiation oncologist missed 1 and we had a horrible experience with the team treating her brain over the next 4 months. – They did not talk to each other and I just think they were incompetent based on what I know now.

The doctor treating everything (he was her 4th opinion and BEST!), but the brain had her on ipi/Yervoy 4 days after gamma knife radiation. (This was chosen because of the abscopal affects found with gamma knife radiation and ipi/Yervoy that showed greater response rates with two treatments given close together.)

4 months after gamma knife we were told that my Mom had a new brain met in the prefrontal lobe. It was large and the neuroncologist wasn't going to treat it.  – By then most of the other cancer had melted away and she was doing very very well… – We got a second opinion, moved all of her treatment to USC.  Long story short, she had 17 brain mets treated 8 days after that first doctor said we should just wait and see what happens… – Lucky for us that we sought that second opinion.

The picture I am trying to paint here is that you need to ask questions, know your options and never be afraid or reluctant to get another opinion. IF we had not done that in the beginning or the middle I doubt my Mom would be in the shape she is now. She is 80. Is almost NED (no evidence of disease). Has no issues and does whatever she wants… This would not have been the case if we hadn't continued to ask questions and simply stopped at the first doctor. If we had done that, my Mom would have moved forward with untreated brain mets for many months OR until she had symptoms or irreversible cognitive issues. 

Lastly, watch the mets with the liver.  I have been told that patients that have a lot or ongoing issues with more tumors in the liver don't have the best prognosis and you want to make sure that you keep an eye on this and you have the BEST doctor you can find for your husband.

Good Luck!

PS

My Mom was BRAF positive, but we started with ipi/Yervoy because of the abscopal affects. At the time Keytruda was not approved and we would have gone with the combo your husband is taking IF ipi/Yervoy did not work and if Keytruda was not yet approved and she had progression.

The first thing anyone here will want to know is if your husbands doctor is a Melanoma Specialist or not.  – This is someone who treats many patients day in and day out at his/her clinic. Preferably this is someone who is a large cancer research facility…  Here is a good list from the Cancer.gov. – If he is not seeing a Specialist he needs to find one NOW. 

Even if he is seeing a Specialist I highly recommend a second and third opinion. Often times doctors will have different ideas for treatment and you need to be aware of this and be exposed to these options and thoughts during the appointments in order to make the right decision on treatment now and in the future.

The second thing that most people would recommend that you, or someone else, take on a active role to keep paperwork, appointment notes (record doctor appointments so you can listen later)… Be curious and ask lots of questions and do research… – This is a great place to ask questions.

The third thing that most people would tell you to do is to get CDs of all of his scans and all the paperwork done to date and keep this in a folder and take them with you to appointments…  Having these documents handy, especially for second and third opinions is very good to do. You also need to make sure that he has had a brain MRI and that one is done regularly. – 40% of melanoma patients end up with brain mets and you want to get these treated before he has any symptoms, which could be anything from a seizure, headaches, ringing in the ears, mobility or cognitive issues…

The fourth this is to keep track of any side effects your husband might have and know what the typical side effects are. You don't want to be caught of guard OR fail to act quickly. – My Mom got colitis with ipi/Yervoy (she is stubborn and didn't tell me what was going on). If we had known what was going on the colitis might not be been so bad. –  It could have killed her, it was that bad. But she will say that thrush or my driving was going to kill her.

I'm sorry to say that your husband has just started his fight and stopping the combo now will just mean that this is not working or working fast enough and that another drug is needed. Even if things look good now, or for a while, at some point the combo will stop working and another treatment will be needed.

Falling back to #2, be prepared to ask questions and be ready to research your options such as clinical trials, stereotactic body radiation therapy (SBRT), or stereotactic radiation therapy (SRS aka Gamma Knife Radiation), and immunotherapies. – Know what immunotherapies are out there, what your doctors recommend and be sure you are with someone you trust and who is very very experienced. (Ask about synergistic treatments too.)

My Mom get's treated at USC Norris Comprehensive Cancer Center in Los Angeles. I highly recommend this center. She had been treated at two different facilities at one point and we were lucky to have switched all of her treatment to one facility before something irreversible happened.  Here is my Mom's background:

She was diagnosed with Stage IV in November of 2013. She was misdiagnosed the first time and told she did NOT have brain mets. She had 3. 30 days from the first MRI she had gamma knife radiation and they got 8 of 9 brain mets treated. The radiation oncologist missed 1 and we had a horrible experience with the team treating her brain over the next 4 months. – They did not talk to each other and I just think they were incompetent based on what I know now.

The doctor treating everything (he was her 4th opinion and BEST!), but the brain had her on ipi/Yervoy 4 days after gamma knife radiation. (This was chosen because of the abscopal affects found with gamma knife radiation and ipi/Yervoy that showed greater response rates with two treatments given close together.)

4 months after gamma knife we were told that my Mom had a new brain met in the prefrontal lobe. It was large and the neuroncologist wasn't going to treat it.  – By then most of the other cancer had melted away and she was doing very very well… – We got a second opinion, moved all of her treatment to USC.  Long story short, she had 17 brain mets treated 8 days after that first doctor said we should just wait and see what happens… – Lucky for us that we sought that second opinion.

The picture I am trying to paint here is that you need to ask questions, know your options and never be afraid or reluctant to get another opinion. IF we had not done that in the beginning or the middle I doubt my Mom would be in the shape she is now. She is 80. Is almost NED (no evidence of disease). Has no issues and does whatever she wants… This would not have been the case if we hadn't continued to ask questions and simply stopped at the first doctor. If we had done that, my Mom would have moved forward with untreated brain mets for many months OR until she had symptoms or irreversible cognitive issues. 

Lastly, watch the mets with the liver.  I have been told that patients that have a lot or ongoing issues with more tumors in the liver don't have the best prognosis and you want to make sure that you keep an eye on this and you have the BEST doctor you can find for your husband.

Good Luck!

PS

My Mom was BRAF positive, but we started with ipi/Yervoy because of the abscopal affects. At the time Keytruda was not approved and we would have gone with the combo your husband is taking IF ipi/Yervoy did not work and if Keytruda was not yet approved and she had progression.