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Clarification on Tafinlar (dabrafenib)/Mekinist (trametinib) combo. Attn: NYKaren

Forums General Melanoma Community Clarification on Tafinlar (dabrafenib)/Mekinist (trametinib) combo. Attn: NYKaren

  • Post
    GAngel
    Participant

      Dear Karen,

      It's been weighing heavy on my heart that you may not have seen my reply back to you on a previous post of yours wherein you stated that Tafinlar is dabrafenib and mekinist combined.  I want to make sure that you know that you have the wrong information as Taflinar is NOT the two combined.  Please read my reply to you regarding this subject which I pasted below.  I just wanted you to realize that you are not presently taking the combo if you are only taking Tafinlar and you should contact your oncologist for further clarification and so that you can start taking the Mekinist (trametinib) with the Tafinlar (dabrafenib), if that was your intention.

      "Tafinlar is not dabrafenib and mekinist combined. These are absolutely two separate drugs. Dabrafenib is the scientific/generic name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Trametinib is the scientific/generic name being sold under the trademark name of Mekinist. These drugs can only be dispensed through a specialty pharmacy and will come separately and the Mekinist(Trametinib) is delivered in a cold package and MUST always be refrigerated. Although I have heard of at least one person who was unable to get their insurance to pay for the combo because of the lack of FDA approval our insurance covered both drugs and so have many other insurances, apparently.  At least give it a try as your doctor is not prohibited from prescribing both drugs.  I may be wrong, however, I believe that obtaining FDA approval of the combo will help prevent any insurance coverage issues." 

      Wishing you all the best!

      Love and blessing to you and yours!

      Gina 

    Viewing 5 reply threads
    • Replies
        Harry in Fair Oaks
        Participant

          Hi,

          I have been on this combo for almost 2-1/2 years in the GSK clinical trial (at the doses now marketed commercially).  You give a good explanation, but one thing surprises me:  I have never been told to refrigerate the trametinib (aka Mekinist).  The packaging I get is not given to me cold in the clinic, and the label says to store up to 77 degrees.  It also says to protect from light and moisture (there is a dessicant with the pills).  Can you please tell me exactly what it says on your Mekinist container as far as storage?  Thanks.

          Best wishes,

          Harry

           

          Harry in Fair Oaks
          Participant

            Hi,

            I have been on this combo for almost 2-1/2 years in the GSK clinical trial (at the doses now marketed commercially).  You give a good explanation, but one thing surprises me:  I have never been told to refrigerate the trametinib (aka Mekinist).  The packaging I get is not given to me cold in the clinic, and the label says to store up to 77 degrees.  It also says to protect from light and moisture (there is a dessicant with the pills).  Can you please tell me exactly what it says on your Mekinist container as far as storage?  Thanks.

            Best wishes,

            Harry

             

            Harry in Fair Oaks
            Participant

              Hi,

              I have been on this combo for almost 2-1/2 years in the GSK clinical trial (at the doses now marketed commercially).  You give a good explanation, but one thing surprises me:  I have never been told to refrigerate the trametinib (aka Mekinist).  The packaging I get is not given to me cold in the clinic, and the label says to store up to 77 degrees.  It also says to protect from light and moisture (there is a dessicant with the pills).  Can you please tell me exactly what it says on your Mekinist container as far as storage?  Thanks.

              Best wishes,

              Harry

               

                Mat
                Participant
                  Harry, the CVS-Caremark label says “refrigerate” (but do not freeze). Also reiterated by the pharmacist when one refills. Also, while I don’t have it handy, the disclosure document that comes with the bottle says store at x degrees–x being a temperature that is below room temperature. You can probably find a PDF of the disclosure document online.
                  Mat
                  Participant
                    Harry, the CVS-Caremark label says “refrigerate” (but do not freeze). Also reiterated by the pharmacist when one refills. Also, while I don’t have it handy, the disclosure document that comes with the bottle says store at x degrees–x being a temperature that is below room temperature. You can probably find a PDF of the disclosure document online.
                    Mat
                    Participant
                      Harry, the CVS-Caremark label says “refrigerate” (but do not freeze). Also reiterated by the pharmacist when one refills. Also, while I don’t have it handy, the disclosure document that comes with the bottle says store at x degrees–x being a temperature that is below room temperature. You can probably find a PDF of the disclosure document online.
                      Harry is right. I have never refrigerated my MEK inhibitor and have never been told to by my trial doctors. I travel with it and sometimes it’s in my pocket, and it sure works fine at room temperature. My cohorts don’t either.It pounds hell out of my cancer like banging a tough steak with a meat hammer. Get the combo as soon as you can. Over 1,000 days of recovery back up this claim of mine.
                      Harry is right. I have never refrigerated my MEK inhibitor and have never been told to by my trial doctors. I travel with it and sometimes it’s in my pocket, and it sure works fine at room temperature. My cohorts don’t either.It pounds hell out of my cancer like banging a tough steak with a meat hammer. Get the combo as soon as you can. Over 1,000 days of recovery back up this claim of mine.
                      Mat
                      Participant
                        Item 16 of the prescribing information (the document that accompanies the prescription–also available via Google search) states “store refrigerated at 36 to 46 degrees”. Perhaps you are receiving a different version on the trial, but those receiving via prescription should refrigerate.
                        Mat
                        Participant
                          Item 16 of the prescribing information (the document that accompanies the prescription–also available via Google search) states “store refrigerated at 36 to 46 degrees”. Perhaps you are receiving a different version on the trial, but those receiving via prescription should refrigerate.
                          NYKaren
                          Participant

                            I did respond…I apoligized and said that I had made a mistake!!!  (Not getting any sleep when I need it, like at bedtime is a problem) I also clarified what a specialty pharmacy is.

                            Sorry you didn't get it…everyone makes mistakes sometimes  🙂

                            Karen

                            NYKaren
                            Participant

                              I did respond…I apoligized and said that I had made a mistake!!!  (Not getting any sleep when I need it, like at bedtime is a problem) I also clarified what a specialty pharmacy is.

                              Sorry you didn't get it…everyone makes mistakes sometimes  🙂

                              Karen

                              NYKaren
                              Participant

                                I did respond…I apoligized and said that I had made a mistake!!!  (Not getting any sleep when I need it, like at bedtime is a problem) I also clarified what a specialty pharmacy is.

                                Sorry you didn't get it…everyone makes mistakes sometimes  🙂

                                Karen

                                NYKaren
                                Participant

                                  Gina, I also stated that I have never had a problem getting Tafilnar through specialty pharmacy (my wonderful CareMark who can't get ANYTHING straight) to send me the script…I have one due in the mail this Monday.)

                                  be well,

                                  Karen

                                  NYKaren
                                  Participant

                                    Gina, I also stated that I have never had a problem getting Tafilnar through specialty pharmacy (my wonderful CareMark who can't get ANYTHING straight) to send me the script…I have one due in the mail this Monday.)

                                    be well,

                                    Karen

                                    NYKaren
                                    Participant

                                      Gina, I also stated that I have never had a problem getting Tafilnar through specialty pharmacy (my wonderful CareMark who can't get ANYTHING straight) to send me the script…I have one due in the mail this Monday.)

                                      be well,

                                      Karen

                                      GAngel
                                      Participant

                                        Dear Karen,

                                        I'm sorry that I did not see that you responded. I was just concerned that you might be under the impression that you were receiving a certain therapy if in fact you believed that the two drugs were combined in one pill form and I wanted you to know so that you could straighten out.  Absolutely everyone makes mistakes, I do all the time, lol! Anyway, my concern was for your health and nothing more. 

                                        God's love and speed in your fight against this beast! WIth Christ you can do all things, you can do this! 

                                        Gina

                                        GAngel
                                        Participant

                                          Dear Karen,

                                          I'm sorry that I did not see that you responded. I was just concerned that you might be under the impression that you were receiving a certain therapy if in fact you believed that the two drugs were combined in one pill form and I wanted you to know so that you could straighten out.  Absolutely everyone makes mistakes, I do all the time, lol! Anyway, my concern was for your health and nothing more. 

                                          God's love and speed in your fight against this beast! WIth Christ you can do all things, you can do this! 

                                          Gina

                                          GAngel
                                          Participant

                                            Dear Karen,

                                            I'm sorry that I did not see that you responded. I was just concerned that you might be under the impression that you were receiving a certain therapy if in fact you believed that the two drugs were combined in one pill form and I wanted you to know so that you could straighten out.  Absolutely everyone makes mistakes, I do all the time, lol! Anyway, my concern was for your health and nothing more. 

                                            God's love and speed in your fight against this beast! WIth Christ you can do all things, you can do this! 

                                            Gina

                                            Mat
                                            Participant
                                              Item 16 of the prescribing information (the document that accompanies the prescription–also available via Google search) states “store refrigerated at 36 to 46 degrees”. Perhaps you are receiving a different version on the trial, but those receiving via prescription should refrigerate.
                                              Harry is right. I have never refrigerated my MEK inhibitor and have never been told to by my trial doctors. I travel with it and sometimes it’s in my pocket, and it sure works fine at room temperature. My cohorts don’t either.It pounds hell out of my cancer like banging a tough steak with a meat hammer. Get the combo as soon as you can. Over 1,000 days of recovery back up this claim of mine.
                                              GAngel
                                              Participant

                                                Hi all!

                                                I'm not sure why the Mekinist that you are receiving in the trial does not come refrigerated.  I do know that I spoke directly to the GSK as well as two pharmacies, the first of which I had to bring the "need to refrigerate" to their attention after I read it  in the GSK packaging (it is printed in such small font that you need a magnifying glass to read it). I was very upset that the pharmacy did not know because the medication had been left out for nearly three weeks exposed to high temperatures. I was advised by GSK that the medication would be okay for 30 days if it had not been exposed to temperatures above 71 degrees, which in our case it had. Therefore we were advised that we needed to throw it out and replace it.

                                                In any event, whether it has been a huge oversight or maybe the med requirements have changed, it is worth looking into just to be sure.  I would hate to think that the medication, although working, may not be working at it's full potential if  it's an oversight.  

                                                I hope this makes sense to you. It's late and I'm really tired but wanted to respond asap!

                                                Blessing to you and yours, 

                                                Gina

                                                GAngel
                                                Participant

                                                  Hi all!

                                                  I'm not sure why the Mekinist that you are receiving in the trial does not come refrigerated.  I do know that I spoke directly to the GSK as well as two pharmacies, the first of which I had to bring the "need to refrigerate" to their attention after I read it  in the GSK packaging (it is printed in such small font that you need a magnifying glass to read it). I was very upset that the pharmacy did not know because the medication had been left out for nearly three weeks exposed to high temperatures. I was advised by GSK that the medication would be okay for 30 days if it had not been exposed to temperatures above 71 degrees, which in our case it had. Therefore we were advised that we needed to throw it out and replace it.

                                                  In any event, whether it has been a huge oversight or maybe the med requirements have changed, it is worth looking into just to be sure.  I would hate to think that the medication, although working, may not be working at it's full potential if  it's an oversight.  

                                                  I hope this makes sense to you. It's late and I'm really tired but wanted to respond asap!

                                                  Blessing to you and yours, 

                                                  Gina

                                                  GAngel
                                                  Participant

                                                    Hi all!

                                                    I'm not sure why the Mekinist that you are receiving in the trial does not come refrigerated.  I do know that I spoke directly to the GSK as well as two pharmacies, the first of which I had to bring the "need to refrigerate" to their attention after I read it  in the GSK packaging (it is printed in such small font that you need a magnifying glass to read it). I was very upset that the pharmacy did not know because the medication had been left out for nearly three weeks exposed to high temperatures. I was advised by GSK that the medication would be okay for 30 days if it had not been exposed to temperatures above 71 degrees, which in our case it had. Therefore we were advised that we needed to throw it out and replace it.

                                                    In any event, whether it has been a huge oversight or maybe the med requirements have changed, it is worth looking into just to be sure.  I would hate to think that the medication, although working, may not be working at it's full potential if  it's an oversight.  

                                                    I hope this makes sense to you. It's late and I'm really tired but wanted to respond asap!

                                                    Blessing to you and yours, 

                                                    Gina

                                                  Aussielyn
                                                  Participant
                                                    I am also on GSK combo and have been told by the dispensing pharmacist at the hospital that Trametinib does not have to be refrigerated. My bottle also says store up to 77* F or 25*C. I specifically asked him because as Mat said there is info from drug company that says to refrigerate so I sought clarification from him. He said it does not come refrigerated from overseas to him. I must admit though it is confusing when there is conflicting information out there.
                                                    I’m wondering if anyone else has had to have a break from the meds because of side effects? I’ve had 15 days off in total ( 5 days at first& after 3 days back on meds another 10 days) waiting for leg & feet pain & mouth ulcers to completely go. Onc is putting me on reduced dose of Dabrafenib & a 15 day course of Prednisone plus same 2 mg dose of Trametinib . Am a bit worried that treatment efficacy may be affected. Do any of my GSK cohorts heard of anyone having similar experience to me?
                                                    Thanks in anticipation, hope you are all well
                                                    Lyn
                                                    Aussielyn
                                                    Participant
                                                      I am also on GSK combo and have been told by the dispensing pharmacist at the hospital that Trametinib does not have to be refrigerated. My bottle also says store up to 77* F or 25*C. I specifically asked him because as Mat said there is info from drug company that says to refrigerate so I sought clarification from him. He said it does not come refrigerated from overseas to him. I must admit though it is confusing when there is conflicting information out there.
                                                      I’m wondering if anyone else has had to have a break from the meds because of side effects? I’ve had 15 days off in total ( 5 days at first& after 3 days back on meds another 10 days) waiting for leg & feet pain & mouth ulcers to completely go. Onc is putting me on reduced dose of Dabrafenib & a 15 day course of Prednisone plus same 2 mg dose of Trametinib . Am a bit worried that treatment efficacy may be affected. Do any of my GSK cohorts heard of anyone having similar experience to me?
                                                      Thanks in anticipation, hope you are all well
                                                      Lyn
                                                      Aussielyn
                                                      Participant
                                                        I am also on GSK combo and have been told by the dispensing pharmacist at the hospital that Trametinib does not have to be refrigerated. My bottle also says store up to 77* F or 25*C. I specifically asked him because as Mat said there is info from drug company that says to refrigerate so I sought clarification from him. He said it does not come refrigerated from overseas to him. I must admit though it is confusing when there is conflicting information out there.
                                                        I’m wondering if anyone else has had to have a break from the meds because of side effects? I’ve had 15 days off in total ( 5 days at first& after 3 days back on meds another 10 days) waiting for leg & feet pain & mouth ulcers to completely go. Onc is putting me on reduced dose of Dabrafenib & a 15 day course of Prednisone plus same 2 mg dose of Trametinib . Am a bit worried that treatment efficacy may be affected. Do any of my GSK cohorts heard of anyone having similar experience to me?
                                                        Thanks in anticipation, hope you are all well
                                                        Lyn
                                                          Harry in Fair Oaks
                                                          Participant

                                                            I have only had to take a few short breaks of only 1 or 2 days each.  These were due to episodes of high fever.  As time went by, the fevers disappeared.  I've now gone 2 years without a break.

                                                            Best wishes,

                                                            Harry

                                                            Harry in Fair Oaks
                                                            Participant

                                                              I have only had to take a few short breaks of only 1 or 2 days each.  These were due to episodes of high fever.  As time went by, the fevers disappeared.  I've now gone 2 years without a break.

                                                              Best wishes,

                                                              Harry

                                                              J Chadick
                                                              Participant
                                                                Two years is good isn’t it? I understood the tumours developed a resistance after a while?
                                                                Twhite00000
                                                                Participant

                                                                  Yes, a resistance develops after a while.  I am currently considering taking part in a new trial with the combo plus a third drug that is thought to prevent resistance.  I was on Keytruda but had sever pain and had to go on a course of high dose(100mg/day) prednisone.  This eliminated the possibility of any immunotherapy treatments.  I am down to 10mg/day of prednisone and hope to be at 5mg/day in the next few months.  I have had no prior BRAF inhibator drugs in the past and currently have mets in lung and diaphram that are very slow growing.  My biggest concern are the side-effects, I have had more complications from my treatments and surgeries than from my melanoma, but obviously killing this cancer is my goal.

                                                                  Twhite00000
                                                                  Participant

                                                                    I took part in the trail and unfortunately was having severe vomiting and had to stop.  I was on the meds for three months and did see results two of my tumors shrunk by over 65% and several months later my PET scan showed NED.  

                                                                    Harry in Fair Oaks
                                                                    Participant

                                                                      I have only had to take a few short breaks of only 1 or 2 days each.  These were due to episodes of high fever.  As time went by, the fevers disappeared.  I've now gone 2 years without a break.

                                                                      Best wishes,

                                                                      Harry

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