braf + mek combo

Oh, dear! It makes me absolutely livid when insurance companies refuse to pay for FDA treatments that have been appropriately prescribed by a physician! I just don't understand how they can get away with such crap! I think that the MRF and other melanoma advocacy groups should file a class action lawsuit to force companies to approve these treatments. But, of course, that would not address your problems right now. 

For now, what are your doctors recommending to treat the brain mets? Melanoma in the brain can cause a stroke at any time so brain mets need to be treated immediately. Hopefully, your doctors can use stereotactic radiosurgery (SRS) called Gamma Knife or Cyber Knife to kill the brain mets. If that won't work, they might recommend neurosurgery. Can you go ahead and schedule treatment for his brain mets right now?

Although it is best to start dabrafenib and MEK at the same time, dabrafenib alone works well including on bran mets. Can Larry go ahead and start the Tafinlar (dabrafenib) and then add the Mekinist (MEK) as soon as you get insurance approval? Have you discussed that with your oncologist?

What is your insurance company's excuse for not paying for the Mekininst? Are they saying that they need peer-reviewed reports to prove that it is necessary? We can supply you with such reports. I'm afraid that you are going to have to be a real pest with the insurance company– be on the phone with them again and again, insist on going up the ladder, provide them with any documents yourself rather than wait for your doctor's office to send documents, threaten legal action– do whatever you can to get this approval. What can we do to help you? Just let us know.

In your profile, you mention that when Larry got ipi in 2012, he was your oncologist's first ipi patient. You also said that Larry went to Salt Lake City for surgery. So I assume that you are going to a local oncologist in Utah. Once a patient gets to Stage IV melanoma, it is very, very important that they go to a melanoma specialty center. The field of melanoma research is progressing so quickly that general oncologists simply can't keep up with these changes in addition to the new developments in all the other types of cancer that they treat. 

Unfortunately, there is no NCI-designated cancer center in Utah so you will have to travel out of state to get to one. You can find a list of such centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center or tell us where you live and the people here will probably be able to recommend a good melanoma center for you. 

I am sorry that you and Larry are having to deal with all this. I'm glad that you came here to reach out for help. Don't lose heart! Do what you can in terms of getting the brain mets treated and getting him started on dabrafenib. Beat up on the insurance company. And let us know what we can do to help you. Keep fighting!

Oh, dear! It makes me absolutely livid when insurance companies refuse to pay for FDA treatments that have been appropriately prescribed by a physician! I just don't understand how they can get away with such crap! I think that the MRF and other melanoma advocacy groups should file a class action lawsuit to force companies to approve these treatments. But, of course, that would not address your problems right now. 

For now, what are your doctors recommending to treat the brain mets? Melanoma in the brain can cause a stroke at any time so brain mets need to be treated immediately. Hopefully, your doctors can use stereotactic radiosurgery (SRS) called Gamma Knife or Cyber Knife to kill the brain mets. If that won't work, they might recommend neurosurgery. Can you go ahead and schedule treatment for his brain mets right now?

Although it is best to start dabrafenib and MEK at the same time, dabrafenib alone works well including on bran mets. Can Larry go ahead and start the Tafinlar (dabrafenib) and then add the Mekinist (MEK) as soon as you get insurance approval? Have you discussed that with your oncologist?

What is your insurance company's excuse for not paying for the Mekininst? Are they saying that they need peer-reviewed reports to prove that it is necessary? We can supply you with such reports. I'm afraid that you are going to have to be a real pest with the insurance company– be on the phone with them again and again, insist on going up the ladder, provide them with any documents yourself rather than wait for your doctor's office to send documents, threaten legal action– do whatever you can to get this approval. What can we do to help you? Just let us know.

In your profile, you mention that when Larry got ipi in 2012, he was your oncologist's first ipi patient. You also said that Larry went to Salt Lake City for surgery. So I assume that you are going to a local oncologist in Utah. Once a patient gets to Stage IV melanoma, it is very, very important that they go to a melanoma specialty center. The field of melanoma research is progressing so quickly that general oncologists simply can't keep up with these changes in addition to the new developments in all the other types of cancer that they treat. 

Unfortunately, there is no NCI-designated cancer center in Utah so you will have to travel out of state to get to one. You can find a list of such centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center or tell us where you live and the people here will probably be able to recommend a good melanoma center for you. 

I am sorry that you and Larry are having to deal with all this. I'm glad that you came here to reach out for help. Don't lose heart! Do what you can in terms of getting the brain mets treated and getting him started on dabrafenib. Beat up on the insurance company. And let us know what we can do to help you. Keep fighting!

Oh, dear! It makes me absolutely livid when insurance companies refuse to pay for FDA treatments that have been appropriately prescribed by a physician! I just don't understand how they can get away with such crap! I think that the MRF and other melanoma advocacy groups should file a class action lawsuit to force companies to approve these treatments. But, of course, that would not address your problems right now. 

For now, what are your doctors recommending to treat the brain mets? Melanoma in the brain can cause a stroke at any time so brain mets need to be treated immediately. Hopefully, your doctors can use stereotactic radiosurgery (SRS) called Gamma Knife or Cyber Knife to kill the brain mets. If that won't work, they might recommend neurosurgery. Can you go ahead and schedule treatment for his brain mets right now?

Although it is best to start dabrafenib and MEK at the same time, dabrafenib alone works well including on bran mets. Can Larry go ahead and start the Tafinlar (dabrafenib) and then add the Mekinist (MEK) as soon as you get insurance approval? Have you discussed that with your oncologist?

What is your insurance company's excuse for not paying for the Mekininst? Are they saying that they need peer-reviewed reports to prove that it is necessary? We can supply you with such reports. I'm afraid that you are going to have to be a real pest with the insurance company– be on the phone with them again and again, insist on going up the ladder, provide them with any documents yourself rather than wait for your doctor's office to send documents, threaten legal action– do whatever you can to get this approval. What can we do to help you? Just let us know.

In your profile, you mention that when Larry got ipi in 2012, he was your oncologist's first ipi patient. You also said that Larry went to Salt Lake City for surgery. So I assume that you are going to a local oncologist in Utah. Once a patient gets to Stage IV melanoma, it is very, very important that they go to a melanoma specialty center. The field of melanoma research is progressing so quickly that general oncologists simply can't keep up with these changes in addition to the new developments in all the other types of cancer that they treat. 

Unfortunately, there is no NCI-designated cancer center in Utah so you will have to travel out of state to get to one. You can find a list of such centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center or tell us where you live and the people here will probably be able to recommend a good melanoma center for you. 

I am sorry that you and Larry are having to deal with all this. I'm glad that you came here to reach out for help. Don't lose heart! Do what you can in terms of getting the brain mets treated and getting him started on dabrafenib. Beat up on the insurance company. And let us know what we can do to help you. Keep fighting!

I'm so sorry you have to deal with this, I know first hand the frustrations of insurance companies. I'm surprised though they won't cover the combo. Both meds have been FDA approved for a while and as of Jan they're approved for use as a combo so it really shouldn't be an issue. I don't expect they would refuse a blood pressure med just because the doctor also ordered a heart med. What POW said about calling to get an explanation for WHY they won't approve is good advice. There should be no problem on their end giving you an explanation. It may be as simple (and stupidly frustrating) as a missing or incorrect form. In the mean time, I also agree with starting the debrafenib on its own whie you're working on geting the other medication. The side effect profile seems scary, but it's better than Zel and certainly better than nothing. You said new insurance kicks in in 3 weeks- why the change in insurance if you don't mind me asking (dont answer if you do mind)? Was it because of the refusal to cover the meds? 

I also agree that it's important to see a melanoma specialist in addition to your local oncologist if at all possible. They are going to know all of the ins and outs and fine details of melanoma and how best to treat it as well as more up to date knowlege on options for clinical trials, etc. They can also have a lot of pull with insurance companies sometimes (I know mine seems to). You don't have to see them for every appointment, but having an initial appointment or 2 to talk to them, establish a Dr./Patient relationship and set up a treatment plan is a very good idea. Many times after those first couple of appointments most of the treatment and follow up happens at your local oncologist's office with instructions from the specialist. That's what happens with me- I see the specialist once or twice a year (unless I need more) and most of the work is done here at home. The specialist and my regular doctor keep in communication to manage my case and I send all of my scans to him to review and help make any necessary changes. FYI though, there is no such thing as a "melanoma center of excellence". It's a misnomer- there ARE "Cancer Centers of Excellence" which are cancer referral centers who have been designated as "centers of excellence" by an organization based on  relatively arbitrary criteria across all cancers treated at that center. All cancers, not just melanoma. That doesn't mean they're not good places to go, but just because it's a "Cancer Center of Excellence" doesn't mean they're the best for Melanoma. I'd start with a search for Melanoma specialists in your area/state and go from there.

Good luck

I'm so sorry you have to deal with this, I know first hand the frustrations of insurance companies. I'm surprised though they won't cover the combo. Both meds have been FDA approved for a while and as of Jan they're approved for use as a combo so it really shouldn't be an issue. I don't expect they would refuse a blood pressure med just because the doctor also ordered a heart med. What POW said about calling to get an explanation for WHY they won't approve is good advice. There should be no problem on their end giving you an explanation. It may be as simple (and stupidly frustrating) as a missing or incorrect form. In the mean time, I also agree with starting the debrafenib on its own whie you're working on geting the other medication. The side effect profile seems scary, but it's better than Zel and certainly better than nothing. You said new insurance kicks in in 3 weeks- why the change in insurance if you don't mind me asking (dont answer if you do mind)? Was it because of the refusal to cover the meds? 

I also agree that it's important to see a melanoma specialist in addition to your local oncologist if at all possible. They are going to know all of the ins and outs and fine details of melanoma and how best to treat it as well as more up to date knowlege on options for clinical trials, etc. They can also have a lot of pull with insurance companies sometimes (I know mine seems to). You don't have to see them for every appointment, but having an initial appointment or 2 to talk to them, establish a Dr./Patient relationship and set up a treatment plan is a very good idea. Many times after those first couple of appointments most of the treatment and follow up happens at your local oncologist's office with instructions from the specialist. That's what happens with me- I see the specialist once or twice a year (unless I need more) and most of the work is done here at home. The specialist and my regular doctor keep in communication to manage my case and I send all of my scans to him to review and help make any necessary changes. FYI though, there is no such thing as a "melanoma center of excellence". It's a misnomer- there ARE "Cancer Centers of Excellence" which are cancer referral centers who have been designated as "centers of excellence" by an organization based on  relatively arbitrary criteria across all cancers treated at that center. All cancers, not just melanoma. That doesn't mean they're not good places to go, but just because it's a "Cancer Center of Excellence" doesn't mean they're the best for Melanoma. I'd start with a search for Melanoma specialists in your area/state and go from there.

Good luck

I'm so sorry you have to deal with this, I know first hand the frustrations of insurance companies. I'm surprised though they won't cover the combo. Both meds have been FDA approved for a while and as of Jan they're approved for use as a combo so it really shouldn't be an issue. I don't expect they would refuse a blood pressure med just because the doctor also ordered a heart med. What POW said about calling to get an explanation for WHY they won't approve is good advice. There should be no problem on their end giving you an explanation. It may be as simple (and stupidly frustrating) as a missing or incorrect form. In the mean time, I also agree with starting the debrafenib on its own whie you're working on geting the other medication. The side effect profile seems scary, but it's better than Zel and certainly better than nothing. You said new insurance kicks in in 3 weeks- why the change in insurance if you don't mind me asking (dont answer if you do mind)? Was it because of the refusal to cover the meds? 

I also agree that it's important to see a melanoma specialist in addition to your local oncologist if at all possible. They are going to know all of the ins and outs and fine details of melanoma and how best to treat it as well as more up to date knowlege on options for clinical trials, etc. They can also have a lot of pull with insurance companies sometimes (I know mine seems to). You don't have to see them for every appointment, but having an initial appointment or 2 to talk to them, establish a Dr./Patient relationship and set up a treatment plan is a very good idea. Many times after those first couple of appointments most of the treatment and follow up happens at your local oncologist's office with instructions from the specialist. That's what happens with me- I see the specialist once or twice a year (unless I need more) and most of the work is done here at home. The specialist and my regular doctor keep in communication to manage my case and I send all of my scans to him to review and help make any necessary changes. FYI though, there is no such thing as a "melanoma center of excellence". It's a misnomer- there ARE "Cancer Centers of Excellence" which are cancer referral centers who have been designated as "centers of excellence" by an organization based on  relatively arbitrary criteria across all cancers treated at that center. All cancers, not just melanoma. That doesn't mean they're not good places to go, but just because it's a "Cancer Center of Excellence" doesn't mean they're the best for Melanoma. I'd start with a search for Melanoma specialists in your area/state and go from there.

Good luck

It is scary how things can go from good to bad so quickly with this terrible disease. Has there been any discussion of radiation to the met on the femur? From what I have read on this forum, while radiation does not seem to eliminate melanoma tumors, it can shrink them. It seems like the size of the one on the femur is causing lots of issues.  

On the insurance company side, I am also surprised that there would be pushback on an FDA-approved treatment prescribed by a doctor. For this disease, I would not be bullied into potentially less effective treatments by an insurance company. This might be a case where it is better to ask forgiveness than permission and fight the battle with insurance after you have been given the desired medication. Last week, my insurance company sent me a letter saying they did not have all the paperwork required to approve my surgery – I really did not care… had the surgery anyway. No regrets. If I have to deal with some paperwork after the fact, so be it. My 2 cents.

Kevin

It is scary how things can go from good to bad so quickly with this terrible disease. Has there been any discussion of radiation to the met on the femur? From what I have read on this forum, while radiation does not seem to eliminate melanoma tumors, it can shrink them. It seems like the size of the one on the femur is causing lots of issues.  

On the insurance company side, I am also surprised that there would be pushback on an FDA-approved treatment prescribed by a doctor. For this disease, I would not be bullied into potentially less effective treatments by an insurance company. This might be a case where it is better to ask forgiveness than permission and fight the battle with insurance after you have been given the desired medication. Last week, my insurance company sent me a letter saying they did not have all the paperwork required to approve my surgery – I really did not care… had the surgery anyway. No regrets. If I have to deal with some paperwork after the fact, so be it. My 2 cents.

Kevin

It is scary how things can go from good to bad so quickly with this terrible disease. Has there been any discussion of radiation to the met on the femur? From what I have read on this forum, while radiation does not seem to eliminate melanoma tumors, it can shrink them. It seems like the size of the one on the femur is causing lots of issues.  

On the insurance company side, I am also surprised that there would be pushback on an FDA-approved treatment prescribed by a doctor. For this disease, I would not be bullied into potentially less effective treatments by an insurance company. This might be a case where it is better to ask forgiveness than permission and fight the battle with insurance after you have been given the desired medication. Last week, my insurance company sent me a letter saying they did not have all the paperwork required to approve my surgery – I really did not care… had the surgery anyway. No regrets. If I have to deal with some paperwork after the fact, so be it. My 2 cents.

Kevin