Stage 4 Advice

I'm sorry that you have to go through this difficult situation.  I guess the decision about going to Florida depends on a few things, in my opinion:

1)  Does the doctor agree that flying is safe given the current situation?

2)  Would the trip allow you and your husband to relax, or would it increase feelings of anxiety?

3)  How long of a flight would it be to get home if your husband is feeling more ill?

4)  Can you ask your trusted doctors for a game plan to follow if your husband's symptoms worsen when he is in Florida?

My late husband, Pete, and I had longed to take a vacation when he was diagnosed with Stage 4, but we unfortunately never got the chance to. If you decide to go, I hope that you can have a wonderful time together. 

Yasmin

I'm sorry that you have to go through this difficult situation.  I guess the decision about going to Florida depends on a few things, in my opinion:

1)  Does the doctor agree that flying is safe given the current situation?

2)  Would the trip allow you and your husband to relax, or would it increase feelings of anxiety?

3)  How long of a flight would it be to get home if your husband is feeling more ill?

4)  Can you ask your trusted doctors for a game plan to follow if your husband's symptoms worsen when he is in Florida?

My late husband, Pete, and I had longed to take a vacation when he was diagnosed with Stage 4, but we unfortunately never got the chance to. If you decide to go, I hope that you can have a wonderful time together. 

Yasmin

I'm sorry that you have to go through this difficult situation.  I guess the decision about going to Florida depends on a few things, in my opinion:

1)  Does the doctor agree that flying is safe given the current situation?

2)  Would the trip allow you and your husband to relax, or would it increase feelings of anxiety?

3)  How long of a flight would it be to get home if your husband is feeling more ill?

4)  Can you ask your trusted doctors for a game plan to follow if your husband's symptoms worsen when he is in Florida?

My late husband, Pete, and I had longed to take a vacation when he was diagnosed with Stage 4, but we unfortunately never got the chance to. If you decide to go, I hope that you can have a wonderful time together. 

Yasmin

I am so sorry to hear of your situation. But do not give up hope! All we have is hope, and many people who have been in dire situations such as yours can get their disease under control. I do, however, believe time is of the essence and you should be relentless with his doctor as to getting his appoitments, scans and treatment bumped up.

If you do go to FL, is it possible to get an appoitment at Moffit? They may move a bit faster in terms of scans/appts and could possibly expedite your husband being approved for immunotherapy. If it were me, I would be asking the doctor for Keytruda or Nivo instead of Yervoy as it shows better response rate. As for the doctor's in FL, I find it hard to believe, that a state with such a high rate of melanoma doesn't have well educated doctors for melanoma. I am sure you can find someone,and many on here can make a recommendation. Where abouts in FL?

While I would love to encourage you to take the trip, the reality is, the decision must be that of your husbands. My suggestion is to just reassure him that you are OK with whatever decision he makes (I'm sure you are already doing this).

Good luck, god bless and please continue to update us!

I am so sorry to hear of your situation. But do not give up hope! All we have is hope, and many people who have been in dire situations such as yours can get their disease under control. I do, however, believe time is of the essence and you should be relentless with his doctor as to getting his appoitments, scans and treatment bumped up.

If you do go to FL, is it possible to get an appoitment at Moffit? They may move a bit faster in terms of scans/appts and could possibly expedite your husband being approved for immunotherapy. If it were me, I would be asking the doctor for Keytruda or Nivo instead of Yervoy as it shows better response rate. As for the doctor's in FL, I find it hard to believe, that a state with such a high rate of melanoma doesn't have well educated doctors for melanoma. I am sure you can find someone,and many on here can make a recommendation. Where abouts in FL?

While I would love to encourage you to take the trip, the reality is, the decision must be that of your husbands. My suggestion is to just reassure him that you are OK with whatever decision he makes (I'm sure you are already doing this).

Good luck, god bless and please continue to update us!

I am so sorry to hear of your situation. But do not give up hope! All we have is hope, and many people who have been in dire situations such as yours can get their disease under control. I do, however, believe time is of the essence and you should be relentless with his doctor as to getting his appoitments, scans and treatment bumped up.

If you do go to FL, is it possible to get an appoitment at Moffit? They may move a bit faster in terms of scans/appts and could possibly expedite your husband being approved for immunotherapy. If it were me, I would be asking the doctor for Keytruda or Nivo instead of Yervoy as it shows better response rate. As for the doctor's in FL, I find it hard to believe, that a state with such a high rate of melanoma doesn't have well educated doctors for melanoma. I am sure you can find someone,and many on here can make a recommendation. Where abouts in FL?

While I would love to encourage you to take the trip, the reality is, the decision must be that of your husbands. My suggestion is to just reassure him that you are OK with whatever decision he makes (I'm sure you are already doing this).

Good luck, god bless and please continue to update us!

If he doesn't already have a doc in fl I would think it would not be easy and take time. Getting a new doc, records to them, insurance and everything takes time but maybe you can do most of it before leaving. Dr weber has left or is leaving moffit for New York university. There is a doc at mayo that Catherine Poole on mif likes. But I think that is in the ne part of Florida so a bit away from Disney. My experience with mayo in Rochester is you cannot ask for better caring doc's and staff. They are truly what the medical industry should be from my experience and opinion. Unfortunately I haven't seen that great of leading edge melanoma treatments offered but I keep praying.

Artie

If he doesn't already have a doc in fl I would think it would not be easy and take time. Getting a new doc, records to them, insurance and everything takes time but maybe you can do most of it before leaving. Dr weber has left or is leaving moffit for New York university. There is a doc at mayo that Catherine Poole on mif likes. But I think that is in the ne part of Florida so a bit away from Disney. My experience with mayo in Rochester is you cannot ask for better caring doc's and staff. They are truly what the medical industry should be from my experience and opinion. Unfortunately I haven't seen that great of leading edge melanoma treatments offered but I keep praying.

Artie

If he doesn't already have a doc in fl I would think it would not be easy and take time. Getting a new doc, records to them, insurance and everything takes time but maybe you can do most of it before leaving. Dr weber has left or is leaving moffit for New York university. There is a doc at mayo that Catherine Poole on mif likes. But I think that is in the ne part of Florida so a bit away from Disney. My experience with mayo in Rochester is you cannot ask for better caring doc's and staff. They are truly what the medical industry should be from my experience and opinion. Unfortunately I haven't seen that great of leading edge melanoma treatments offered but I keep praying.

Artie

I agree with Patina, you need to get a second opinion ASAP.  Is your current doctor a melanoma specialist?  With all of those mets, I'm very surprised he is recommending Yervoy next.  Either Keytruda or Opdivo currently have better results with fewer adverse events.  I do not have information on how many metastases different people had, but most definitely, there exist people with Stage IV disease that are NED several years after starting Keytruda or Opdivo.  I'm hoping some of them will chime in here.  Please be aggressive in getting your husband treated.  Don't wait for your doctor to tell you what to do.  Call him with any changes to your husband's condition.  And get that second opinion with a melanoma specialist.  You have to drive this bus, they won't do it for you.

Best of luck to you both

I agree with Patina, you need to get a second opinion ASAP.  Is your current doctor a melanoma specialist?  With all of those mets, I'm very surprised he is recommending Yervoy next.  Either Keytruda or Opdivo currently have better results with fewer adverse events.  I do not have information on how many metastases different people had, but most definitely, there exist people with Stage IV disease that are NED several years after starting Keytruda or Opdivo.  I'm hoping some of them will chime in here.  Please be aggressive in getting your husband treated.  Don't wait for your doctor to tell you what to do.  Call him with any changes to your husband's condition.  And get that second opinion with a melanoma specialist.  You have to drive this bus, they won't do it for you.

Best of luck to you both

I won't mince words since I've re-read all of the posts you have made since June and all of the excellent advice you've received. 

I would FIRE you if you were my patient advocate. 

Since June the people on this board have answered your questions but I can't see where the sound advice you have received has resulted in better care or decision making for your husbands condition. Neither you or your husband seem to be taking charge here and if there was ever a time to take charge it is now. 

Your husband is NOT seeing a melanoma specialist and is being treated by a general oncologist. You are taking and getting the advice of a general oncologist, which no one here recommends. Melanoma is tricky and at the very least you needed to get one second opinion from a melanoma specialist. You haven't done it. – Based on what you have said, the overall advice given by your doctor is outdated and more likely to end in bad outcome with no real chance for a good one. Please drive or fly somewhere and get one.

You also don't seem to be in communication with your husbands doctor about how he is doing between appointments.  You mentioned that your husband "forgot" to mention issues in one of his last appointments because he was depressed. Wasn't someone with him advocating for him? Wasn't there a list of questions for the doctor?  Doesn't your doctor want to know what is going on with him between appointments? Why did the people here on the board need to tell you to contact his oncologist? – I don't' understand this passive behavior when you are asking for help and have been given excellent advice on multiple occasions. Get the advice and take some action. 

Your husband has a brain met (06/2015). The only treatment he has received is the Mekenist and Teffinlat combo. This is NOT a reasonable treatment for brain mets. Your husband needs to see a radiation oncologist who specializes in SRS treatment (gamma knife radiation). Your doctor is NOT a radiation oncologist and should not be making a decision NOT to treat or at least refer you to a radiation oncologist months ago.

You needed to and need to now consider SRS treatment combined with other therapy.  There is an additive effect when the two are given together.  Something a melanoma specialist can tell you. Your general oncologist has said he isn't worried about one brain met.  

Brain mets spread. They seed. One can turn into many and your husband can have dementia like or Alzheimers like symptoms, his personality can change, his decision making can become erratic… The Mekenist and Teffinlat combo he is on can't help here if the tumors don't react to the pills. And when was his last brain MRI? SRS is treatment and the brain met your husband has would react. Right now you don't know what has happened. One brain met could be a dozen now. – Trust me I know from personal experience.

Please do yourself a favor and re-read all of the posts you placed and the responses you have received and do some research. I hope if you do this that you will make different and better decisions or at least be more curious than you have shown here. Your husband needs this and if you are not up to it find someone who is. It hard I know, but it is needed here.

Sorry to be so harsh, but I think you need a wake up call, to get a backbone and to fight for your husband and for the best treatment he can get. You haven't gotten the best treatment yet, but you've gotten great advice. Again, please re-read all of the responses to your posts.  I am hopeful that it you do so that it might help him get much better treatment. – I'd like your husband to have his trip to Florida, but I'd also like to see both of you get the best advice and treatment he needs now so he is around next year and beyond. If you don't, I fear that it is inevitable that he won't be around the way things are going.

Again, sorry to be so harsh.

I won't mince words since I've re-read all of the posts you have made since June and all of the excellent advice you've received. 

I would FIRE you if you were my patient advocate. 

Since June the people on this board have answered your questions but I can't see where the sound advice you have received has resulted in better care or decision making for your husbands condition. Neither you or your husband seem to be taking charge here and if there was ever a time to take charge it is now. 

Your husband is NOT seeing a melanoma specialist and is being treated by a general oncologist. You are taking and getting the advice of a general oncologist, which no one here recommends. Melanoma is tricky and at the very least you needed to get one second opinion from a melanoma specialist. You haven't done it. – Based on what you have said, the overall advice given by your doctor is outdated and more likely to end in bad outcome with no real chance for a good one. Please drive or fly somewhere and get one.

You also don't seem to be in communication with your husbands doctor about how he is doing between appointments.  You mentioned that your husband "forgot" to mention issues in one of his last appointments because he was depressed. Wasn't someone with him advocating for him? Wasn't there a list of questions for the doctor?  Doesn't your doctor want to know what is going on with him between appointments? Why did the people here on the board need to tell you to contact his oncologist? – I don't' understand this passive behavior when you are asking for help and have been given excellent advice on multiple occasions. Get the advice and take some action. 

Your husband has a brain met (06/2015). The only treatment he has received is the Mekenist and Teffinlat combo. This is NOT a reasonable treatment for brain mets. Your husband needs to see a radiation oncologist who specializes in SRS treatment (gamma knife radiation). Your doctor is NOT a radiation oncologist and should not be making a decision NOT to treat or at least refer you to a radiation oncologist months ago.

You needed to and need to now consider SRS treatment combined with other therapy.  There is an additive effect when the two are given together.  Something a melanoma specialist can tell you. Your general oncologist has said he isn't worried about one brain met.  

Brain mets spread. They seed. One can turn into many and your husband can have dementia like or Alzheimers like symptoms, his personality can change, his decision making can become erratic… The Mekenist and Teffinlat combo he is on can't help here if the tumors don't react to the pills. And when was his last brain MRI? SRS is treatment and the brain met your husband has would react. Right now you don't know what has happened. One brain met could be a dozen now. – Trust me I know from personal experience.

Please do yourself a favor and re-read all of the posts you placed and the responses you have received and do some research. I hope if you do this that you will make different and better decisions or at least be more curious than you have shown here. Your husband needs this and if you are not up to it find someone who is. It hard I know, but it is needed here.

Sorry to be so harsh, but I think you need a wake up call, to get a backbone and to fight for your husband and for the best treatment he can get. You haven't gotten the best treatment yet, but you've gotten great advice. Again, please re-read all of the responses to your posts.  I am hopeful that it you do so that it might help him get much better treatment. – I'd like your husband to have his trip to Florida, but I'd also like to see both of you get the best advice and treatment he needs now so he is around next year and beyond. If you don't, I fear that it is inevitable that he won't be around the way things are going.

Again, sorry to be so harsh.

Renee,

I am very glad to learn that your husband is now on Opdivo, has had his brain met shrink and is becoming informed about his radiation options.  This is all great news!  I can also appreciate where Patina was coming from in her post.  You can click on usernames to see how long each user has been active on this board.  Patina has been on here for a long time and has given wonderful and caring advice and provided valuable experience with her mother.  Based on what you had posted to date, it did not appear that your husband was receiving the level of care he needed at this stage of his disease.  To those of us haunting this board for quite a while, we have seen what is available out there and of course want the best care for your husband.  I suspect Patina's post was written in frustration as a result.

I would continue to recommend that you get a second opinion from a melanoma specialist.  Your current doctor is following the standard of care (which may work and I hope it does) but would not necessarily know about the latest research and trials which may help if the standard of care fails.  It wasn't until I met with my third oncologist that I learned that when BRAF inhibitors "wear off" the cancer has a tendency to become both more prolific and more aggressive.  This information impacted my deciosion on when to introduce BRAF inhibitors in my own program (this discussion was before the combo – which is perhaps different?).  In any event, each oncologist was offering a different approach.  It was educational to speak with each of them.

I wish you and your husband good health and good luck on this cancer journey.

Maggie

Hang in there Renee. You are doing great.  

Hang in there Renee. You are doing great.  

Hang in there Renee. You are doing great.  

Renee,

I am very glad to learn that your husband is now on Opdivo, has had his brain met shrink and is becoming informed about his radiation options.  This is all great news!  I can also appreciate where Patina was coming from in her post.  You can click on usernames to see how long each user has been active on this board.  Patina has been on here for a long time and has given wonderful and caring advice and provided valuable experience with her mother.  Based on what you had posted to date, it did not appear that your husband was receiving the level of care he needed at this stage of his disease.  To those of us haunting this board for quite a while, we have seen what is available out there and of course want the best care for your husband.  I suspect Patina's post was written in frustration as a result.

I would continue to recommend that you get a second opinion from a melanoma specialist.  Your current doctor is following the standard of care (which may work and I hope it does) but would not necessarily know about the latest research and trials which may help if the standard of care fails.  It wasn't until I met with my third oncologist that I learned that when BRAF inhibitors "wear off" the cancer has a tendency to become both more prolific and more aggressive.  This information impacted my deciosion on when to introduce BRAF inhibitors in my own program (this discussion was before the combo – which is perhaps different?).  In any event, each oncologist was offering a different approach.  It was educational to speak with each of them.

I wish you and your husband good health and good luck on this cancer journey.

Maggie

Renee,

I am very glad to learn that your husband is now on Opdivo, has had his brain met shrink and is becoming informed about his radiation options.  This is all great news!  I can also appreciate where Patina was coming from in her post.  You can click on usernames to see how long each user has been active on this board.  Patina has been on here for a long time and has given wonderful and caring advice and provided valuable experience with her mother.  Based on what you had posted to date, it did not appear that your husband was receiving the level of care he needed at this stage of his disease.  To those of us haunting this board for quite a while, we have seen what is available out there and of course want the best care for your husband.  I suspect Patina's post was written in frustration as a result.

I would continue to recommend that you get a second opinion from a melanoma specialist.  Your current doctor is following the standard of care (which may work and I hope it does) but would not necessarily know about the latest research and trials which may help if the standard of care fails.  It wasn't until I met with my third oncologist that I learned that when BRAF inhibitors "wear off" the cancer has a tendency to become both more prolific and more aggressive.  This information impacted my deciosion on when to introduce BRAF inhibitors in my own program (this discussion was before the combo – which is perhaps different?).  In any event, each oncologist was offering a different approach.  It was educational to speak with each of them.

I wish you and your husband good health and good luck on this cancer journey.

Maggie

And THIS is one reason I detest the "anonymous" option.  

And THIS is one reason I detest the "anonymous" option.  

I just realized that I confused Patina's reply with Anonymous's reply.  Sorry about that, Patina!

I just realized that I confused Patina's reply with Anonymous's reply.  Sorry about that, Patina!

I just realized that I confused Patina's reply with Anonymous's reply.  Sorry about that, Patina!

And THIS is one reason I detest the "anonymous" option.  

I won't mince words since I've re-read all of the posts you have made since June and all of the excellent advice you've received. 

I would FIRE you if you were my patient advocate. 

Since June the people on this board have answered your questions but I can't see where the sound advice you have received has resulted in better care or decision making for your husbands condition. Neither you or your husband seem to be taking charge here and if there was ever a time to take charge it is now. 

Your husband is NOT seeing a melanoma specialist and is being treated by a general oncologist. You are taking and getting the advice of a general oncologist, which no one here recommends. Melanoma is tricky and at the very least you needed to get one second opinion from a melanoma specialist. You haven't done it. – Based on what you have said, the overall advice given by your doctor is outdated and more likely to end in bad outcome with no real chance for a good one. Please drive or fly somewhere and get one.

You also don't seem to be in communication with your husbands doctor about how he is doing between appointments.  You mentioned that your husband "forgot" to mention issues in one of his last appointments because he was depressed. Wasn't someone with him advocating for him? Wasn't there a list of questions for the doctor?  Doesn't your doctor want to know what is going on with him between appointments? Why did the people here on the board need to tell you to contact his oncologist? – I don't' understand this passive behavior when you are asking for help and have been given excellent advice on multiple occasions. Get the advice and take some action. 

Your husband has a brain met (06/2015). The only treatment he has received is the Mekenist and Teffinlat combo. This is NOT a reasonable treatment for brain mets. Your husband needs to see a radiation oncologist who specializes in SRS treatment (gamma knife radiation). Your doctor is NOT a radiation oncologist and should not be making a decision NOT to treat or at least refer you to a radiation oncologist months ago.

You needed to and need to now consider SRS treatment combined with other therapy.  There is an additive effect when the two are given together.  Something a melanoma specialist can tell you. Your general oncologist has said he isn't worried about one brain met.  

Brain mets spread. They seed. One can turn into many and your husband can have dementia like or Alzheimers like symptoms, his personality can change, his decision making can become erratic… The Mekenist and Teffinlat combo he is on can't help here if the tumors don't react to the pills. And when was his last brain MRI? SRS is treatment and the brain met your husband has would react. Right now you don't know what has happened. One brain met could be a dozen now. – Trust me I know from personal experience.

Please do yourself a favor and re-read all of the posts you placed and the responses you have received and do some research. I hope if you do this that you will make different and better decisions or at least be more curious than you have shown here. Your husband needs this and if you are not up to it find someone who is. It hard I know, but it is needed here.

Sorry to be so harsh, but I think you need a wake up call, to get a backbone and to fight for your husband and for the best treatment he can get. You haven't gotten the best treatment yet, but you've gotten great advice. Again, please re-read all of the responses to your posts.  I am hopeful that it you do so that it might help him get much better treatment. – I'd like your husband to have his trip to Florida, but I'd also like to see both of you get the best advice and treatment he needs now so he is around next year and beyond. If you don't, I fear that it is inevitable that he won't be around the way things are going.

Again, sorry to be so harsh.

I agree with Patina, you need to get a second opinion ASAP.  Is your current doctor a melanoma specialist?  With all of those mets, I'm very surprised he is recommending Yervoy next.  Either Keytruda or Opdivo currently have better results with fewer adverse events.  I do not have information on how many metastases different people had, but most definitely, there exist people with Stage IV disease that are NED several years after starting Keytruda or Opdivo.  I'm hoping some of them will chime in here.  Please be aggressive in getting your husband treated.  Don't wait for your doctor to tell you what to do.  Call him with any changes to your husband's condition.  And get that second opinion with a melanoma specialist.  You have to drive this bus, they won't do it for you.

Best of luck to you both