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braf + mek combo

Forums General Melanoma Community braf + mek combo

  • Post
    ljhncj12345
    Participant

      Larry had what we all thought was a good response to ipi after only 3 infusions in Febuary March and April 2013. We had 8 really good months. Scans 2 weeks ago showed 2 brain mets and one in his lower back by his intestines. doctors have been trying to get the braf + mek combo approved through insurance for two weeks now They will only approvve the Dabrafenib. Since he was intolerant to vemurafanib in 2012 ( he could only  take it for 3 weeks because of fevers and dehydration) his oncologist says he needs the mekinest with the Dabrafenib. 2 days ago he started having severe pain in his leg. X ray showed a 3 inch met in his femur. In 2 weeks time this disease has taken him from walking 3 miles a day to strggling to walk accross the room on cruthces. I just hope  can make it 3 more weeks until new insurance kicks in and we can see if they will approve meds.

    Viewing 8 reply threads
    • Replies
        POW
        Participant

          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!

            NYKaren
            Participant

              Hi, if it were me, I'd start taking the Dab alone. I had terrible side-effects from Zel and none from Tafilnar.  It worked so fast for me and others, I could almost see it working! , FYI, I had several brain mets treated successfully with Gamma Knife (2separate occurances). POW is right, it is very important to be seen by a melanoma center of excellence.  This is what they do. All day, every day. 

              Please let us know. 

              Karen

              ljhncj12345
              Participant

                He will be starting on the Tuesday if approval for combo does not come in. I read this board almost every day and if it were me we would go to melanoma specialist. Larry is currently to sick to travel. Hopefully in a few weeks.

                ljhncj12345
                Participant

                  He will be starting on the Tuesday if approval for combo does not come in. I read this board almost every day and if it were me we would go to melanoma specialist. Larry is currently to sick to travel. Hopefully in a few weeks.

                  ljhncj12345
                  Participant

                    He will be starting on the Tuesday if approval for combo does not come in. I read this board almost every day and if it were me we would go to melanoma specialist. Larry is currently to sick to travel. Hopefully in a few weeks.

                    POW
                    Participant

                      It's great that he will be starting Tafinlar next week. Excellent! And hopefully, he will be able to add the Mekininst shortly thereafter. And soon after that… he will be feeling much better and be able to travel if he wants to. Right?? Right!! Your fight is paying off. Keep fighting. 

                      POW
                      Participant

                        It's great that he will be starting Tafinlar next week. Excellent! And hopefully, he will be able to add the Mekininst shortly thereafter. And soon after that… he will be feeling much better and be able to travel if he wants to. Right?? Right!! Your fight is paying off. Keep fighting. 

                        POW
                        Participant

                          It's great that he will be starting Tafinlar next week. Excellent! And hopefully, he will be able to add the Mekininst shortly thereafter. And soon after that… he will be feeling much better and be able to travel if he wants to. Right?? Right!! Your fight is paying off. Keep fighting. 

                          NYKaren
                          Participant

                            Hi, if it were me, I'd start taking the Dab alone. I had terrible side-effects from Zel and none from Tafilnar.  It worked so fast for me and others, I could almost see it working! , FYI, I had several brain mets treated successfully with Gamma Knife (2separate occurances). POW is right, it is very important to be seen by a melanoma center of excellence.  This is what they do. All day, every day. 

                            Please let us know. 

                            Karen

                            NYKaren
                            Participant

                              Hi, if it were me, I'd start taking the Dab alone. I had terrible side-effects from Zel and none from Tafilnar.  It worked so fast for me and others, I could almost see it working! , FYI, I had several brain mets treated successfully with Gamma Knife (2separate occurances). POW is right, it is very important to be seen by a melanoma center of excellence.  This is what they do. All day, every day. 

                              Please let us know. 

                              Karen

                              ljhncj12345
                              Participant

                                Thanks for your response. We are seeing his oncologist today. Apparently one of his mets is toddo big to treat with gamma knife.He has already had whole brain radiation in 2012 so that is not an option.I will check into getting him on the taflinar alone today I am just concerned if it does the same thing to him that the zelboraf did we will be out of options. As far as the melanoma specialist goes financially traveling long distances has not been an option. We live in southern Idaho.  Huntsman cancer center in Salt Lake city is the closest NCI center to us. I read this message board and our oncologist is willing to try new treatments. Maybe a larger center could work better with insurance. I just do not know.

                                ljhncj12345
                                Participant

                                  Thanks for your response. We are seeing his oncologist today. Apparently one of his mets is toddo big to treat with gamma knife.He has already had whole brain radiation in 2012 so that is not an option.I will check into getting him on the taflinar alone today I am just concerned if it does the same thing to him that the zelboraf did we will be out of options. As far as the melanoma specialist goes financially traveling long distances has not been an option. We live in southern Idaho.  Huntsman cancer center in Salt Lake city is the closest NCI center to us. I read this message board and our oncologist is willing to try new treatments. Maybe a larger center could work better with insurance. I just do not know.

                                  POW
                                  Participant

                                    I checked out the Huntsman Cancer Institute in Salt Lake City. They do have a melanoma specialty clinic that sounds pretty good to me. They also offer some melamona clinical trials, which I always think is a good sign. 

                                    Dr. Kenneth Grossman has both an MD and a PhD and is an oncologist who specializes in melanoma. He trained at Oregon Health & Sciences University (OHSU) and at MD Anderson, both of which are well-regarded melanoma institutions. You can view his profiile here: http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0586145#tab1

                                    Contact Dr. Grossman at: 

                                    Kenneth Grossmann, MD, PhD
                                    Huntsman Cancer Institute
                                    Clinic 2D, Melanoma
                                    2000 Circle of Hope
                                    Salt Lake City, UT 84112
                                    Phone: 801-587-4735
                                     
                                    As Eva said, you probably only have to go to Salt Lake City for occasional consults. If you need assistance with travel costs, I think that the American Cancer Society provides small travel grants. So does the Melanoma International Foundation– contact Catherine Poole for more information ( [email protected] ). She is very good about responding quickly. If you do decide to go to Huntsman, ask to talk to their social work depatment– they often have lists of local hotels, transportation and restaurants that offer discounts to cancer patients. If you would like more suggestions for financial assistance, let us know. 
                                     
                                    Good luck to you! Please do keep us posted about how you and  Larry are doing.
                                     
                                     
                                    POW
                                    Participant

                                      I checked out the Huntsman Cancer Institute in Salt Lake City. They do have a melanoma specialty clinic that sounds pretty good to me. They also offer some melamona clinical trials, which I always think is a good sign. 

                                      Dr. Kenneth Grossman has both an MD and a PhD and is an oncologist who specializes in melanoma. He trained at Oregon Health & Sciences University (OHSU) and at MD Anderson, both of which are well-regarded melanoma institutions. You can view his profiile here: http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0586145#tab1

                                      Contact Dr. Grossman at: 

                                      Kenneth Grossmann, MD, PhD
                                      Huntsman Cancer Institute
                                      Clinic 2D, Melanoma
                                      2000 Circle of Hope
                                      Salt Lake City, UT 84112
                                      Phone: 801-587-4735
                                       
                                      As Eva said, you probably only have to go to Salt Lake City for occasional consults. If you need assistance with travel costs, I think that the American Cancer Society provides small travel grants. So does the Melanoma International Foundation– contact Catherine Poole for more information ( [email protected] ). She is very good about responding quickly. If you do decide to go to Huntsman, ask to talk to their social work depatment– they often have lists of local hotels, transportation and restaurants that offer discounts to cancer patients. If you would like more suggestions for financial assistance, let us know. 
                                       
                                      Good luck to you! Please do keep us posted about how you and  Larry are doing.
                                       
                                       
                                      POW
                                      Participant

                                        I checked out the Huntsman Cancer Institute in Salt Lake City. They do have a melanoma specialty clinic that sounds pretty good to me. They also offer some melamona clinical trials, which I always think is a good sign. 

                                        Dr. Kenneth Grossman has both an MD and a PhD and is an oncologist who specializes in melanoma. He trained at Oregon Health & Sciences University (OHSU) and at MD Anderson, both of which are well-regarded melanoma institutions. You can view his profiile here: http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0586145#tab1

                                        Contact Dr. Grossman at: 

                                        Kenneth Grossmann, MD, PhD
                                        Huntsman Cancer Institute
                                        Clinic 2D, Melanoma
                                        2000 Circle of Hope
                                        Salt Lake City, UT 84112
                                        Phone: 801-587-4735
                                         
                                        As Eva said, you probably only have to go to Salt Lake City for occasional consults. If you need assistance with travel costs, I think that the American Cancer Society provides small travel grants. So does the Melanoma International Foundation– contact Catherine Poole for more information ( [email protected] ). She is very good about responding quickly. If you do decide to go to Huntsman, ask to talk to their social work depatment– they often have lists of local hotels, transportation and restaurants that offer discounts to cancer patients. If you would like more suggestions for financial assistance, let us know. 
                                         
                                        Good luck to you! Please do keep us posted about how you and  Larry are doing.
                                         
                                         
                                        ljhncj12345
                                        Participant

                                          Thanks for your response. We are seeing his oncologist today. Apparently one of his mets is toddo big to treat with gamma knife.He has already had whole brain radiation in 2012 so that is not an option.I will check into getting him on the taflinar alone today I am just concerned if it does the same thing to him that the zelboraf did we will be out of options. As far as the melanoma specialist goes financially traveling long distances has not been an option. We live in southern Idaho.  Huntsman cancer center in Salt Lake city is the closest NCI center to us. I read this message board and our oncologist is willing to try new treatments. Maybe a larger center could work better with insurance. I just do not know.

                                        POW
                                        Participant

                                          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!

                                          POW
                                          Participant

                                            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!

                                            ecc26
                                            Participant

                                              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

                                               

                                              ecc26
                                              Participant

                                                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

                                                 

                                                ecc26
                                                Participant

                                                  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

                                                   

                                                  kpcollins31
                                                  Participant

                                                    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

                                                     

                                                    kpcollins31
                                                    Participant

                                                      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

                                                       

                                                        ljhncj12345
                                                        Participant

                                                          It is looking up a little for the combo Doctor spoke with insurance and specialty pharmacy yesterday. I had to go on heallthcare exchange because Larrys Cobra went up 75% between January and Febuary. And I am totally with you on the paperwork side. If I had the money to give the pharmacy have had the drugs here last week.

                                                          ljhncj12345
                                                          Participant

                                                            It is looking up a little for the combo Doctor spoke with insurance and specialty pharmacy yesterday. I had to go on heallthcare exchange because Larrys Cobra went up 75% between January and Febuary. And I am totally with you on the paperwork side. If I had the money to give the pharmacy have had the drugs here last week.

                                                            MattF
                                                            Participant

                                                              It took 3 weeks total for me to get the meds approved and finally delivered….

                                                              some of it was between standard pharm for ins but needing specialty pharmacy etc….in the end it got done with phone calls and getting everyone on the same page etc.

                                                              I hope everything goes well…..but I would get the TAFINLAR and start….

                                                              My Mel Onc had me start the Taf 7 days early anyway in order to ease into side effects …or make an attempt to.

                                                              all the best,

                                                              Matt

                                                               

                                                              MattF
                                                              Participant

                                                                It took 3 weeks total for me to get the meds approved and finally delivered….

                                                                some of it was between standard pharm for ins but needing specialty pharmacy etc….in the end it got done with phone calls and getting everyone on the same page etc.

                                                                I hope everything goes well…..but I would get the TAFINLAR and start….

                                                                My Mel Onc had me start the Taf 7 days early anyway in order to ease into side effects …or make an attempt to.

                                                                all the best,

                                                                Matt

                                                                 

                                                                I hope Larry, his doctor, and the insurance company, all realize that it is rare in pharmacopeia, to discover a drug that increases the beneficial affects of another drug, and at the same time mollifies the adverse affects of the first one, without bringing its own new burden of problems. It has happened with Tafinlar and Mekinist.

                                                                My Stage IV tumors shrank like the frost in Spring. Yes I was sick about 12 days the first year, but the bouts were spaced months apart, and each two day session of shaking and sweating, the headache, and looking for toilets, was less than the prior one. I had a month long bout with EN, where I got lumps and bumps, bilaterally, but my doctors thought it a good reaction, as it was my immune system going on the fight. I am in month 38, and have been without adverse affects for the past two years, and back hiking in the mountains.

                                                                Now this combo is approved by the FDA, and if  Larry's doctor believes it is in his best interests, and he meets the profile for its use, and they still give him the turndown, it is time to tell them you are going to contact Gerry Spence's firm in Jackson WY, which specializes in suing insurance companies for bad faith in dealing with their customers. Sometimes they discover that they just approved it on the day they got the letter of intent to sue. What a coincidence!

                                                                JPM2, retired

                                                                University of Wyoming, College of Law '69

                                                                ljhncj12345
                                                                Participant

                                                                  We talked to doc today.   He called insurance company yesterday said he thinks the pharmacy and insurance company and him are finallystarting to get on the same page.  We shall see. Thanks to everyone on this board for your support.

                                                                   

                                                                  bigb0624
                                                                  Participant

                                                                    Recent;y i stoppefd taking Zelboraf and swithed to GSK's combo drugs.  At first my insurance company refused to pay for the Mekinist but then my oncologist filed a protest and within 4 days they both were approved.  I pay $60 co-pay for both drugs. 

                                                                    ljhncj12345
                                                                    Participant

                                                                      We just heard last night from the insurance review committee that they approved the combination for Larry. It just took a while for everyone to get on the same page because the combo drugs were just recently approved. It took almost three weeks. Waiting is just really hard to do. We should have the drugs on Tuesday. Reading this board gives me hope.Thank You all. 

                                                                      POW
                                                                      Participant

                                                                        That is wonderful news! Hooray!! Congratulations for fighting the good fight. I hope your husband has excellent results with the combo. Let us know how things go for him. 

                                                                        POW
                                                                        Participant

                                                                          That is wonderful news! Hooray!! Congratulations for fighting the good fight. I hope your husband has excellent results with the combo. Let us know how things go for him. 

                                                                          POW
                                                                          Participant

                                                                            That is wonderful news! Hooray!! Congratulations for fighting the good fight. I hope your husband has excellent results with the combo. Let us know how things go for him. 

                                                                            ljhncj12345
                                                                            Participant

                                                                              We just heard last night from the insurance review committee that they approved the combination for Larry. It just took a while for everyone to get on the same page because the combo drugs were just recently approved. It took almost three weeks. Waiting is just really hard to do. We should have the drugs on Tuesday. Reading this board gives me hope.Thank You all. 

                                                                              ljhncj12345
                                                                              Participant

                                                                                We just heard last night from the insurance review committee that they approved the combination for Larry. It just took a while for everyone to get on the same page because the combo drugs were just recently approved. It took almost three weeks. Waiting is just really hard to do. We should have the drugs on Tuesday. Reading this board gives me hope.Thank You all. 

                                                                                bigb0624
                                                                                Participant

                                                                                  Recent;y i stoppefd taking Zelboraf and swithed to GSK's combo drugs.  At first my insurance company refused to pay for the Mekinist but then my oncologist filed a protest and within 4 days they both were approved.  I pay $60 co-pay for both drugs. 

                                                                                  bigb0624
                                                                                  Participant

                                                                                    Recent;y i stoppefd taking Zelboraf and swithed to GSK's combo drugs.  At first my insurance company refused to pay for the Mekinist but then my oncologist filed a protest and within 4 days they both were approved.  I pay $60 co-pay for both drugs. 

                                                                                    ljhncj12345
                                                                                    Participant

                                                                                      We talked to doc today.   He called insurance company yesterday said he thinks the pharmacy and insurance company and him are finallystarting to get on the same page.  We shall see. Thanks to everyone on this board for your support.

                                                                                       

                                                                                      ljhncj12345
                                                                                      Participant

                                                                                        We talked to doc today.   He called insurance company yesterday said he thinks the pharmacy and insurance company and him are finallystarting to get on the same page.  We shall see. Thanks to everyone on this board for your support.

                                                                                         

                                                                                        I hope Larry, his doctor, and the insurance company, all realize that it is rare in pharmacopeia, to discover a drug that increases the beneficial affects of another drug, and at the same time mollifies the adverse affects of the first one, without bringing its own new burden of problems. It has happened with Tafinlar and Mekinist.

                                                                                        My Stage IV tumors shrank like the frost in Spring. Yes I was sick about 12 days the first year, but the bouts were spaced months apart, and each two day session of shaking and sweating, the headache, and looking for toilets, was less than the prior one. I had a month long bout with EN, where I got lumps and bumps, bilaterally, but my doctors thought it a good reaction, as it was my immune system going on the fight. I am in month 38, and have been without adverse affects for the past two years, and back hiking in the mountains.

                                                                                        Now this combo is approved by the FDA, and if  Larry's doctor believes it is in his best interests, and he meets the profile for its use, and they still give him the turndown, it is time to tell them you are going to contact Gerry Spence's firm in Jackson WY, which specializes in suing insurance companies for bad faith in dealing with their customers. Sometimes they discover that they just approved it on the day they got the letter of intent to sue. What a coincidence!

                                                                                        JPM2, retired

                                                                                        University of Wyoming, College of Law '69

                                                                                        I hope Larry, his doctor, and the insurance company, all realize that it is rare in pharmacopeia, to discover a drug that increases the beneficial affects of another drug, and at the same time mollifies the adverse affects of the first one, without bringing its own new burden of problems. It has happened with Tafinlar and Mekinist.

                                                                                        My Stage IV tumors shrank like the frost in Spring. Yes I was sick about 12 days the first year, but the bouts were spaced months apart, and each two day session of shaking and sweating, the headache, and looking for toilets, was less than the prior one. I had a month long bout with EN, where I got lumps and bumps, bilaterally, but my doctors thought it a good reaction, as it was my immune system going on the fight. I am in month 38, and have been without adverse affects for the past two years, and back hiking in the mountains.

                                                                                        Now this combo is approved by the FDA, and if  Larry's doctor believes it is in his best interests, and he meets the profile for its use, and they still give him the turndown, it is time to tell them you are going to contact Gerry Spence's firm in Jackson WY, which specializes in suing insurance companies for bad faith in dealing with their customers. Sometimes they discover that they just approved it on the day they got the letter of intent to sue. What a coincidence!

                                                                                        JPM2, retired

                                                                                        University of Wyoming, College of Law '69

                                                                                        MattF
                                                                                        Participant

                                                                                          It took 3 weeks total for me to get the meds approved and finally delivered….

                                                                                          some of it was between standard pharm for ins but needing specialty pharmacy etc….in the end it got done with phone calls and getting everyone on the same page etc.

                                                                                          I hope everything goes well…..but I would get the TAFINLAR and start….

                                                                                          My Mel Onc had me start the Taf 7 days early anyway in order to ease into side effects …or make an attempt to.

                                                                                          all the best,

                                                                                          Matt

                                                                                           

                                                                                          ljhncj12345
                                                                                          Participant

                                                                                            It is looking up a little for the combo Doctor spoke with insurance and specialty pharmacy yesterday. I had to go on heallthcare exchange because Larrys Cobra went up 75% between January and Febuary. And I am totally with you on the paperwork side. If I had the money to give the pharmacy have had the drugs here last week.

                                                                                          kpcollins31
                                                                                          Participant

                                                                                            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

                                                                                             

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