Tafinlar
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Tafinlar

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  • Post
    • August 21, 2013 at 11:49 pm
    NYKaren
    Participant
    Hi everyone,
    So I just started my first dose of Tafinlar.
    I’m pretty nervous and excited.

    I landed in the hospital again 2 weeks ago for 4 days. I’ll keep you posted.

    Hi everyone,
    So I just started my first dose of Tafinlar.
    I’m pretty nervous and excited.

    I landed in the hospital again 2 weeks ago for 4 days. I’ll keep you posted.

Viewing 12 reply threads
  • Replies
      • August 22, 2013 at 1:33 am
      King
      Participant

      Hoping and praying that you have a great response with minimal side effects.  Do keep us posted.  Stay out of the hospital.  🙂

      One day at a time.

      Stay Strong

      King/Kathie

      Stage IV 7/05 Liver mets

      • August 22, 2013 at 1:33 am
      King
      Participant

      Hoping and praying that you have a great response with minimal side effects.  Do keep us posted.  Stay out of the hospital.  🙂

      One day at a time.

      Stay Strong

      King/Kathie

      Stage IV 7/05 Liver mets

      • August 22, 2013 at 1:33 am
      King
      Participant

      Hoping and praying that you have a great response with minimal side effects.  Do keep us posted.  Stay out of the hospital.  🙂

      One day at a time.

      Stay Strong

      King/Kathie

      Stage IV 7/05 Liver mets

      • August 22, 2013 at 7:32 am
      Owl
      Participant

      Karen, good to hear from you. I cross my fingers, hope you will have a great response.

      All the best, Jenny

      • August 22, 2013 at 7:32 am
      Owl
      Participant

      Karen, good to hear from you. I cross my fingers, hope you will have a great response.

      All the best, Jenny

      • August 22, 2013 at 7:32 am
      Owl
      Participant

      Karen, good to hear from you. I cross my fingers, hope you will have a great response.

      All the best, Jenny

      • August 22, 2013 at 12:58 pm
      POW
      Participant

      Hi, Karen-

       

      Under the circumstances I think that I would be "nervous and excited", too. I'm casting a strong "whammy" your way that the Taflinar works for you quickly and with very few side effects. 

      I am a little confused, though. I thought you were going to participate in the Merck anti-PD1 trial but now you're taking Tafinlar (dabrafenib)? Did you change your mind about the PD-1 trial or are you going to try that later or what? 

      Anyway, I have high hopes for the Tafinlar. You go, girl! WHAMMY!! smiley

      • August 22, 2013 at 12:58 pm
      POW
      Participant

      Hi, Karen-

       

      Under the circumstances I think that I would be "nervous and excited", too. I'm casting a strong "whammy" your way that the Taflinar works for you quickly and with very few side effects. 

      I am a little confused, though. I thought you were going to participate in the Merck anti-PD1 trial but now you're taking Tafinlar (dabrafenib)? Did you change your mind about the PD-1 trial or are you going to try that later or what? 

      Anyway, I have high hopes for the Tafinlar. You go, girl! WHAMMY!! smiley

      • August 22, 2013 at 12:58 pm
      POW
      Participant

      Hi, Karen-

       

      Under the circumstances I think that I would be "nervous and excited", too. I'm casting a strong "whammy" your way that the Taflinar works for you quickly and with very few side effects. 

      I am a little confused, though. I thought you were going to participate in the Merck anti-PD1 trial but now you're taking Tafinlar (dabrafenib)? Did you change your mind about the PD-1 trial or are you going to try that later or what? 

      Anyway, I have high hopes for the Tafinlar. You go, girl! WHAMMY!! smiley

      • August 22, 2013 at 1:20 pm
      Mat
      Participant

      Hi,

      I posted on my experience with the Tafinlar-Mekinist combo a week or so ago.  I've now been on it for 3 weeks.  Recognizing that the treatment is only a "bridge", I've had outstanding results.  A subcutaneous tumor on my shoulder (4 cm) started to shrink within 2-3 days (it is now almost gone) and I also started to "feel better" within that same time frame–give it at least a week, however.  The organ that was most "at risk" for me was the liver–and I had a decent amount of liver sensation/pain, particularly in bed.  Gone within a week!  And my liver functions are now essentially normal.  I also had a small brain met that was identified before I started the combo.  I had it gamma-knifed last week and the MRI showed that it had shrunk by 25% while I was on the combo.  On the other hand, I developed a jaw tumor before I started the combo and lost some feeling in my mouth.  The combo has not (yet) resolved that.  A minor nuisance in the scheme of things.

      As for side effects–keep in mind that I'm on the combo, not Tafinlar alone.  Hopefully I'm not jinxing myself, but I have had very few side effects.  Some joint pain (particularly hips) early on, but that seems to have resolved.  Some "skin thickening" on my forehead.  Minor and manageable stuff. 

      I hope you get similar results and have an easy time with any side effects.

      Mat

      • August 22, 2013 at 1:20 pm
      Mat
      Participant

      Hi,

      I posted on my experience with the Tafinlar-Mekinist combo a week or so ago.  I've now been on it for 3 weeks.  Recognizing that the treatment is only a "bridge", I've had outstanding results.  A subcutaneous tumor on my shoulder (4 cm) started to shrink within 2-3 days (it is now almost gone) and I also started to "feel better" within that same time frame–give it at least a week, however.  The organ that was most "at risk" for me was the liver–and I had a decent amount of liver sensation/pain, particularly in bed.  Gone within a week!  And my liver functions are now essentially normal.  I also had a small brain met that was identified before I started the combo.  I had it gamma-knifed last week and the MRI showed that it had shrunk by 25% while I was on the combo.  On the other hand, I developed a jaw tumor before I started the combo and lost some feeling in my mouth.  The combo has not (yet) resolved that.  A minor nuisance in the scheme of things.

      As for side effects–keep in mind that I'm on the combo, not Tafinlar alone.  Hopefully I'm not jinxing myself, but I have had very few side effects.  Some joint pain (particularly hips) early on, but that seems to have resolved.  Some "skin thickening" on my forehead.  Minor and manageable stuff. 

      I hope you get similar results and have an easy time with any side effects.

      Mat

      • August 22, 2013 at 1:20 pm
      Mat
      Participant

      Hi,

      I posted on my experience with the Tafinlar-Mekinist combo a week or so ago.  I've now been on it for 3 weeks.  Recognizing that the treatment is only a "bridge", I've had outstanding results.  A subcutaneous tumor on my shoulder (4 cm) started to shrink within 2-3 days (it is now almost gone) and I also started to "feel better" within that same time frame–give it at least a week, however.  The organ that was most "at risk" for me was the liver–and I had a decent amount of liver sensation/pain, particularly in bed.  Gone within a week!  And my liver functions are now essentially normal.  I also had a small brain met that was identified before I started the combo.  I had it gamma-knifed last week and the MRI showed that it had shrunk by 25% while I was on the combo.  On the other hand, I developed a jaw tumor before I started the combo and lost some feeling in my mouth.  The combo has not (yet) resolved that.  A minor nuisance in the scheme of things.

      As for side effects–keep in mind that I'm on the combo, not Tafinlar alone.  Hopefully I'm not jinxing myself, but I have had very few side effects.  Some joint pain (particularly hips) early on, but that seems to have resolved.  Some "skin thickening" on my forehead.  Minor and manageable stuff. 

      I hope you get similar results and have an easy time with any side effects.

      Mat

      • August 23, 2013 at 2:12 am
      NYKaren
      Participant
      I think I confuse myself sometimes too! Because of the brain mets that had developed within a relatively short period of time, the really severe ear/scalp pain, etc….they (the onc’s) felt that I was being “untreated” for too long. It’s been very interesting to see my husband’s new role here…have a good night, my good friends.
      Karen
      • August 23, 2013 at 2:12 am
      NYKaren
      Participant
      I think I confuse myself sometimes too! Because of the brain mets that had developed within a relatively short period of time, the really severe ear/scalp pain, etc….they (the onc’s) felt that I was being “untreated” for too long. It’s been very interesting to see my husband’s new role here…have a good night, my good friends.
      Karen
      • August 23, 2013 at 2:12 am
      NYKaren
      Participant
      I think I confuse myself sometimes too! Because of the brain mets that had developed within a relatively short period of time, the really severe ear/scalp pain, etc….they (the onc’s) felt that I was being “untreated” for too long. It’s been very interesting to see my husband’s new role here…have a good night, my good friends.
      Karen
      • August 25, 2013 at 4:07 pm
      awillett1991
      Participant
      Karen – just thinking of you and I hope all is going well with the new drug. You sure have been through the ringer, keep fighting!

      Amy

      • August 25, 2013 at 4:07 pm
      awillett1991
      Participant
      Karen – just thinking of you and I hope all is going well with the new drug. You sure have been through the ringer, keep fighting!

      Amy

      • August 25, 2013 at 4:07 pm
      awillett1991
      Participant
      Karen – just thinking of you and I hope all is going well with the new drug. You sure have been through the ringer, keep fighting!

      Amy

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