A good day
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A good day

› Forums › General Melanoma Community › A good day

  • Post
    • September 30, 2013 at 11:15 pm
    NYKaren
    Participant
    I went for a brain MRI this morning. Neurologist say everything is shrinking and that no new mets have formed. Still not allowed to drive–I didn’t know that in NY, anyone who’s has a seizure cannot drive for six months. Two down, four to go.
    I’m still on 2mg. of Dextramethasone, next week one, then finally finished.
    I’m cleared to go back to work tomorrow.

    I’ve been on Trafilnar for six weeks now. Tomorrow I’m starting two weeks off, one month on, etc. quite frankly, being that I have practically no side effects, this is definitely scaring me. Still on Keppra, also for six months.

    So, all in all good day, I really hope it stays that way.
    Karen

Viewing 14 reply threads
  • Replies
      • September 30, 2013 at 11:34 pm
      awillett1991
      Participant
      Karen – so good to hear from you – you are such a fighter! I have been on dab 3 weeks. Did your Dr say why they are alternating it? How long until you saw positive results? I am supposed to start Mekinist this wk – but my Dr is worried about side effects ( not too bad so far) getting worse. So glad you are doing well!
      • September 30, 2013 at 11:34 pm
      awillett1991
      Participant
      Karen – so good to hear from you – you are such a fighter! I have been on dab 3 weeks. Did your Dr say why they are alternating it? How long until you saw positive results? I am supposed to start Mekinist this wk – but my Dr is worried about side effects ( not too bad so far) getting worse. So glad you are doing well!
        • September 30, 2013 at 11:50 pm
        NYKaren
        Participant
        Hi Amy,
        For the same reason they do alternate dosing on Zel…in the hopes it will extend response time. I had pretty bad side effects on Zel–was never able to take full’4-pill dose, only 3–and almost no side effects on Trafilnar. She did say other doctors are trying it, so maybe we’ll be hearing more about it. You have been in my thoughts, you are definitely a fighter, Amy..
        Karen
        • September 30, 2013 at 11:50 pm
        NYKaren
        Participant
        Hi Amy,
        For the same reason they do alternate dosing on Zel…in the hopes it will extend response time. I had pretty bad side effects on Zel–was never able to take full’4-pill dose, only 3–and almost no side effects on Trafilnar. She did say other doctors are trying it, so maybe we’ll be hearing more about it. You have been in my thoughts, you are definitely a fighter, Amy..
        Karen
        • October 1, 2013 at 12:07 am
        Brendan
        Participant

        Karen,

        Glad to hear that everything is shrinking.  Good luck at work.

        Brendan

        • October 1, 2013 at 12:07 am
        Brendan
        Participant

        Karen,

        Glad to hear that everything is shrinking.  Good luck at work.

        Brendan

        • October 1, 2013 at 12:07 am
        Brendan
        Participant

        Karen,

        Glad to hear that everything is shrinking.  Good luck at work.

        Brendan

        • September 30, 2013 at 11:50 pm
        NYKaren
        Participant
        Hi Amy,
        For the same reason they do alternate dosing on Zel…in the hopes it will extend response time. I had pretty bad side effects on Zel–was never able to take full’4-pill dose, only 3–and almost no side effects on Trafilnar. She did say other doctors are trying it, so maybe we’ll be hearing more about it. You have been in my thoughts, you are definitely a fighter, Amy..
        Karen
      • September 30, 2013 at 11:34 pm
      awillett1991
      Participant
      Karen – so good to hear from you – you are such a fighter! I have been on dab 3 weeks. Did your Dr say why they are alternating it? How long until you saw positive results? I am supposed to start Mekinist this wk – but my Dr is worried about side effects ( not too bad so far) getting worse. So glad you are doing well!
      • October 1, 2013 at 12:47 am
      aldakota22
      Participant

      So happy for you Karen.Prayers sent your way that all the days from now on will be good days.Beat the Beast.    Al

      • October 1, 2013 at 12:47 am
      aldakota22
      Participant

      So happy for you Karen.Prayers sent your way that all the days from now on will be good days.Beat the Beast.    Al

      • October 1, 2013 at 12:47 am
      aldakota22
      Participant

      So happy for you Karen.Prayers sent your way that all the days from now on will be good days.Beat the Beast.    Al

      • October 1, 2013 at 1:22 am
      BrianP
      Participant

      Great news Karen!  Keep the good news coming.

      • October 1, 2013 at 1:22 am
      BrianP
      Participant

      Great news Karen!  Keep the good news coming.

      • October 1, 2013 at 1:22 am
      BrianP
      Participant

      Great news Karen!  Keep the good news coming.

      • October 1, 2013 at 5:42 am
      GAngel
      Participant

      Hi Karen,

      You have been through so much, I pray that your current treatments are a success! Forgive me if you have previously stated, but is there a reason why your oncologist is not adding mekinist to your treatment with dabrafenib? My husband's oncologist told me when I inquired about intermittent dosing (since he had done it that way on Zelboraf) that adding the MEK deals with the resistance issue and therefore intermittent dosing is really not necessary.  Have you had discussions with your doctors about this?

      Obviously I have no medical schooling, however, even after he said that to me, I was still wondering about this issue and thinking that it may be wise to do the intermittent dosing with the combo in hopes of lengthening the amount of time that it will work just in case the melanoma finds another pathway as surely there are more than two? Idk, just a thought. 

      All my best!

      Gina

        • October 1, 2013 at 3:30 pm
        NYKaren
        Participant

        Hi Gina,

        I already am on both drugs.  Tafilnar is the dabrafenib and Menkist together. 

        Thanks for checking, though.  As long as one goes through a specialty pharmacy, one is able to get Tanfilnar as one drug.  (two pills, twice a day).

        I don't really know what's taking the FDA so long!

        thanks,

        Karen

        • October 1, 2013 at 3:59 pm
        DonnaK
        Participant

        Karyn, Do you remember where you heard that Tafinlar is both dabrafinib and Mekinist together? My husband gets Tafinlar from a specialty pharmacy, but I'm fairly certain that it is only dabrafinib.

        Donna

        • October 1, 2013 at 8:28 pm
        awillett1991
        Participant
        Karen. – I agree w Donna. I just got Mekinist today and it is separate! even has to be refrigerated. Might be worth checking what you’re getting. Mine is thru a specialty pharmacy too.
        • October 2, 2013 at 12:34 am
        Mat
        Participant
        Definitely 2 separate medications. Sounds like you’ve got Tafinlar without the Mekinist.
        • October 2, 2013 at 3:20 am
        DeniseK
        Participant

        I agree it is 2 separate drugs.  I take 1 mekinist per day at 2mg and 4 tafinlar (dabrafenib) per day.  The Mek has to be refrigerated as well.

        • October 2, 2013 at 3:20 am
        DeniseK
        Participant

        I agree it is 2 separate drugs.  I take 1 mekinist per day at 2mg and 4 tafinlar (dabrafenib) per day.  The Mek has to be refrigerated as well.

        • October 2, 2013 at 3:20 am
        DeniseK
        Participant

        I agree it is 2 separate drugs.  I take 1 mekinist per day at 2mg and 4 tafinlar (dabrafenib) per day.  The Mek has to be refrigerated as well.

        • October 2, 2013 at 12:34 am
        Mat
        Participant
        Definitely 2 separate medications. Sounds like you’ve got Tafinlar without the Mekinist.
        • October 2, 2013 at 12:34 am
        Mat
        Participant
        Definitely 2 separate medications. Sounds like you’ve got Tafinlar without the Mekinist.
        • October 1, 2013 at 8:28 pm
        awillett1991
        Participant
        Karen. – I agree w Donna. I just got Mekinist today and it is separate! even has to be refrigerated. Might be worth checking what you’re getting. Mine is thru a specialty pharmacy too.
        • October 1, 2013 at 8:28 pm
        awillett1991
        Participant
        Karen. – I agree w Donna. I just got Mekinist today and it is separate! even has to be refrigerated. Might be worth checking what you’re getting. Mine is thru a specialty pharmacy too.
        • October 1, 2013 at 3:59 pm
        DonnaK
        Participant

        Karyn, Do you remember where you heard that Tafinlar is both dabrafinib and Mekinist together? My husband gets Tafinlar from a specialty pharmacy, but I'm fairly certain that it is only dabrafinib.

        Donna

        • October 1, 2013 at 3:59 pm
        DonnaK
        Participant

        Karyn, Do you remember where you heard that Tafinlar is both dabrafinib and Mekinist together? My husband gets Tafinlar from a specialty pharmacy, but I'm fairly certain that it is only dabrafinib.

        Donna

        • October 3, 2013 at 3:18 am
        GAngel
        Participant

        Hi Karen,

        Absolutely two separate drugs. Dabrafenib is the scientific name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Mekinist is the scientific name being sold under the trademark name of Trametinib. 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, 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 prevent any insurance coverage issues. 

        Wishing you all the best!

        Love and blessing to you and yours!

        Gina 

        • October 3, 2013 at 3:18 am
        GAngel
        Participant

        Hi Karen,

        Absolutely two separate drugs. Dabrafenib is the scientific name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Mekinist is the scientific name being sold under the trademark name of Trametinib. 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, 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 prevent any insurance coverage issues. 

        Wishing you all the best!

        Love and blessing to you and yours!

        Gina 

        • October 3, 2013 at 3:18 am
        GAngel
        Participant

        Hi Karen,

        Absolutely two separate drugs. Dabrafenib is the scientific name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Mekinist is the scientific name being sold under the trademark name of Trametinib. 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, 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 prevent any insurance coverage issues. 

        Wishing you all the best!

        Love and blessing to you and yours!

        Gina 

        • October 1, 2013 at 3:30 pm
        NYKaren
        Participant

        Hi Gina,

        I already am on both drugs.  Tafilnar is the dabrafenib and Menkist together. 

        Thanks for checking, though.  As long as one goes through a specialty pharmacy, one is able to get Tanfilnar as one drug.  (two pills, twice a day).

        I don't really know what's taking the FDA so long!

        thanks,

        Karen

        • October 1, 2013 at 3:30 pm
        NYKaren
        Participant

        Hi Gina,

        I already am on both drugs.  Tafilnar is the dabrafenib and Menkist together. 

        Thanks for checking, though.  As long as one goes through a specialty pharmacy, one is able to get Tanfilnar as one drug.  (two pills, twice a day).

        I don't really know what's taking the FDA so long!

        thanks,

        Karen

      • October 1, 2013 at 5:42 am
      GAngel
      Participant

      Hi Karen,

      You have been through so much, I pray that your current treatments are a success! Forgive me if you have previously stated, but is there a reason why your oncologist is not adding mekinist to your treatment with dabrafenib? My husband's oncologist told me when I inquired about intermittent dosing (since he had done it that way on Zelboraf) that adding the MEK deals with the resistance issue and therefore intermittent dosing is really not necessary.  Have you had discussions with your doctors about this?

      Obviously I have no medical schooling, however, even after he said that to me, I was still wondering about this issue and thinking that it may be wise to do the intermittent dosing with the combo in hopes of lengthening the amount of time that it will work just in case the melanoma finds another pathway as surely there are more than two? Idk, just a thought. 

      All my best!

      Gina

      • October 1, 2013 at 5:42 am
      GAngel
      Participant

      Hi Karen,

      You have been through so much, I pray that your current treatments are a success! Forgive me if you have previously stated, but is there a reason why your oncologist is not adding mekinist to your treatment with dabrafenib? My husband's oncologist told me when I inquired about intermittent dosing (since he had done it that way on Zelboraf) that adding the MEK deals with the resistance issue and therefore intermittent dosing is really not necessary.  Have you had discussions with your doctors about this?

      Obviously I have no medical schooling, however, even after he said that to me, I was still wondering about this issue and thinking that it may be wise to do the intermittent dosing with the combo in hopes of lengthening the amount of time that it will work just in case the melanoma finds another pathway as surely there are more than two? Idk, just a thought. 

      All my best!

      Gina

      • October 18, 2013 at 2:35 pm
      MeNDave
      Participant

      So good to see you are still fighting the good fight!  Had to check in and see how you are doing 🙂

      • October 18, 2013 at 2:35 pm
      MeNDave
      Participant

      So good to see you are still fighting the good fight!  Had to check in and see how you are doing 🙂

      • October 18, 2013 at 2:35 pm
      MeNDave
      Participant

      So good to see you are still fighting the good fight!  Had to check in and see how you are doing 🙂

Viewing 14 reply threads
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