› Forums › General Melanoma Community › Clarification on Tafinlar (dabrafenib)/Mekinist (trametinib) combo. Attn: NYKaren
- This topic has 33 replies, 8 voices, and was last updated 5 years, 2 months ago by Twhite00000.
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- October 10, 2013 at 8:14 am
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
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- October 10, 2013 at 5:40 pm
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
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- October 10, 2013 at 5:40 pm
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
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- October 10, 2013 at 5:40 pm
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
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- October 10, 2013 at 10:57 pm
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. -
- October 10, 2013 at 10:57 pm
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. -
- October 10, 2013 at 10:57 pm
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. -
- October 11, 2013 at 1:34 am
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. -
- October 11, 2013 at 1:34 am
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. -
- October 11, 2013 at 9:10 am
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. -
- October 11, 2013 at 9:10 am
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. -
- October 15, 2013 at 8:59 am
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
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- October 15, 2013 at 8:59 am
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
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- October 15, 2013 at 8:59 am
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
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- October 11, 2013 at 9:10 am
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. -
- October 11, 2013 at 1:34 am
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. -
- October 15, 2013 at 9:29 am
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
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- October 15, 2013 at 9:29 am
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
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- October 15, 2013 at 9:29 am
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
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- October 12, 2013 at 3:52 am
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 -
- October 12, 2013 at 3:52 am
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 -
- October 12, 2013 at 3:52 am
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-
- October 12, 2013 at 1:56 pm
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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- October 12, 2013 at 1:56 pm
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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- August 30, 2017 at 8:16 pm
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.
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- January 4, 2019 at 8:56 pm
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.
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- October 12, 2013 at 1:56 pm
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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