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  • Post
    • May 8, 2013 at 5:13 am
    DeniseK
    Participant

    Hello my fellow Warriors!  Long time huh?  Yes I'm still alive and kicking, kicking pretty good actually.  It's been a rough couple of months but I'm making it through.  Last I posted I was suffering horribly from nausea.  I lost 30 lbs in a month and was super weak.  My Z dosage was 3 x 2, I dropped it myself to 2 x 2 just to feel better, my doctor was a bit upset with me but it's still working and I"m definately feeling better.

    Hello my fellow Warriors!  Long time huh?  Yes I'm still alive and kicking, kicking pretty good actually.  It's been a rough couple of months but I'm making it through.  Last I posted I was suffering horribly from nausea.  I lost 30 lbs in a month and was super weak.  My Z dosage was 3 x 2, I dropped it myself to 2 x 2 just to feel better, my doctor was a bit upset with me but it's still working and I"m definately feeling better.  Sometimes I will stop taking it for a few days if I"m feeling bad but go right back on it, so far so good nothing is growing and my tumors have significantly decreased or disappeared.  I"m not NED as of yet but hoping to get there.

    My WBR didn't kill the brain lesion but either the WBR or the Z reduced the size from 12mm to 8mm.  I"m going in for SRS starting June 10th.  I had to delay things because I"m going on a cruise this next Monday-Friday.  I'm going to Mexico so I have plenty of sunscreen.

    I just wanted to drop in and let everyone know how I"m doing.  I"ve been cruising around the site seeing how people are.  May marks the 5th month that I've been on Z and I'm getting a little anxious hoping it'll keep doing it's thing, but the good news is my brain is officially stable for 12 weeks and I'm looking into trials.  I hope there's something out there that will cure us all!!

    Lots of Love,

    Denise

Viewing 20 reply threads
  • Replies
      • May 8, 2013 at 10:08 am
      Brendan
      Participant

      Hi Denise,

      Congrats on the stable brain met.  I hope you find yourself a trial.  Relax and enjoy the cruise!

      Good luck,

      Brendan

      • May 8, 2013 at 10:08 am
      Brendan
      Participant

      Hi Denise,

      Congrats on the stable brain met.  I hope you find yourself a trial.  Relax and enjoy the cruise!

      Good luck,

      Brendan

      • May 8, 2013 at 10:08 am
      Brendan
      Participant

      Hi Denise,

      Congrats on the stable brain met.  I hope you find yourself a trial.  Relax and enjoy the cruise!

      Good luck,

      Brendan

      • May 8, 2013 at 12:11 pm
      Tina D
      Participant

      Hi Denise! 

      I am glad you checked in and glad to hear you are doing better than you were! I wonder if your Dr would consider the staggered dosing that is being shown to be effective? Maybe that would enable you to tolerate the side effects better, too. Looks like they are finding that time on/time off of Zelboraf helps it efficacy by reducing the chances of the melanoma becoming resistant to the med. Might be worth checking in to.

      Have a great time on your cruise!!!

      Tina

      • May 8, 2013 at 12:11 pm
      Tina D
      Participant

      Hi Denise! 

      I am glad you checked in and glad to hear you are doing better than you were! I wonder if your Dr would consider the staggered dosing that is being shown to be effective? Maybe that would enable you to tolerate the side effects better, too. Looks like they are finding that time on/time off of Zelboraf helps it efficacy by reducing the chances of the melanoma becoming resistant to the med. Might be worth checking in to.

      Have a great time on your cruise!!!

      Tina

      • May 8, 2013 at 12:11 pm
      Tina D
      Participant

      Hi Denise! 

      I am glad you checked in and glad to hear you are doing better than you were! I wonder if your Dr would consider the staggered dosing that is being shown to be effective? Maybe that would enable you to tolerate the side effects better, too. Looks like they are finding that time on/time off of Zelboraf helps it efficacy by reducing the chances of the melanoma becoming resistant to the med. Might be worth checking in to.

      Have a great time on your cruise!!!

      Tina

      • May 8, 2013 at 1:21 pm
      buffcody
      Participant

      Great news!  Good luck, Denise, and thanks for the update!

      • May 8, 2013 at 1:21 pm
      buffcody
      Participant

      Great news!  Good luck, Denise, and thanks for the update!

      • May 8, 2013 at 1:21 pm
      buffcody
      Participant

      Great news!  Good luck, Denise, and thanks for the update!

      • May 8, 2013 at 1:28 pm
      awillett1991
      Participant
      Denise,

      Good to hear fom you – you’ve had a rough road, definitely. Definitely some anti pd1 availability right now and lots more opening up in June is what I’ve heard. Catherine Poole at MIF has a list and is very, very helpful. Keep fighting and thanks for checking in!

      Amy

      • May 8, 2013 at 1:28 pm
      awillett1991
      Participant
      Denise,

      Good to hear fom you – you’ve had a rough road, definitely. Definitely some anti pd1 availability right now and lots more opening up in June is what I’ve heard. Catherine Poole at MIF has a list and is very, very helpful. Keep fighting and thanks for checking in!

      Amy

      • May 8, 2013 at 1:28 pm
      awillett1991
      Participant
      Denise,

      Good to hear fom you – you’ve had a rough road, definitely. Definitely some anti pd1 availability right now and lots more opening up in June is what I’ve heard. Catherine Poole at MIF has a list and is very, very helpful. Keep fighting and thanks for checking in!

      Amy

      • May 8, 2013 at 8:38 pm
      Phil S
      Participant
      Denise, So happy to see your post, and that you sound well. Have a wonderful time on your cruise, you deserve a great vacation! And, all the best on Zelboraf and with the SRS. Keep us posted! Valerie (Phil’s wife)
      • May 8, 2013 at 8:38 pm
      Phil S
      Participant
      Denise, So happy to see your post, and that you sound well. Have a wonderful time on your cruise, you deserve a great vacation! And, all the best on Zelboraf and with the SRS. Keep us posted! Valerie (Phil’s wife)
      • May 8, 2013 at 8:38 pm
      Phil S
      Participant
      Denise, So happy to see your post, and that you sound well. Have a wonderful time on your cruise, you deserve a great vacation! And, all the best on Zelboraf and with the SRS. Keep us posted! Valerie (Phil’s wife)
      • May 8, 2013 at 9:55 pm
      aldakota22
      Participant

      Happy to see your post Denise.Prayers sent your way that you soon get to NED.See that you are taking a cruise.Go enjoy.All the best.Beat the Beast.  Al

      • May 8, 2013 at 9:55 pm
      aldakota22
      Participant

      Happy to see your post Denise.Prayers sent your way that you soon get to NED.See that you are taking a cruise.Go enjoy.All the best.Beat the Beast.  Al

      • May 8, 2013 at 9:55 pm
      aldakota22
      Participant

      Happy to see your post Denise.Prayers sent your way that you soon get to NED.See that you are taking a cruise.Go enjoy.All the best.Beat the Beast.  Al

      • May 9, 2013 at 2:35 am
      DeniseK
      Participant

      Thank you everyone.  I take my'self off the Z for a few days here and there if I'm feeling bad, I know it's risky but I have the arm tumor as a marker.  I only do it if I'm feeling really bad.  They're taking me off Z for the SRS for a week, works out perfect with my cruise so I'm happy about that.  Maybe some of our bodies only need a small dosage?  I don't mind being the guinea pig for this, in my mind I don't have terminal cancer, sometimes I remember Oh yeah I got this melanoma crap but I don't let it rule my life.  Lately I've partaken in a few margaritas to welcome in spring!  I have gotten burnt on my feet pretty bad and the back of my neck since I still don't have hair so I have to remember the small areas get burnt too!  Overall I'm looking forward to finding a CURE for this so we can all get back to having a normal life and enjoying every minute of it!!  

      I'm going back to San Fran after the SRS to determine the next step so I will keep ya'll posted.  Also I wanted you all to know that you're all in my heart each and everyday.  We can all beat this!!

      All my best,

      Denise

      • May 9, 2013 at 2:35 am
      DeniseK
      Participant

      Thank you everyone.  I take my'self off the Z for a few days here and there if I'm feeling bad, I know it's risky but I have the arm tumor as a marker.  I only do it if I'm feeling really bad.  They're taking me off Z for the SRS for a week, works out perfect with my cruise so I'm happy about that.  Maybe some of our bodies only need a small dosage?  I don't mind being the guinea pig for this, in my mind I don't have terminal cancer, sometimes I remember Oh yeah I got this melanoma crap but I don't let it rule my life.  Lately I've partaken in a few margaritas to welcome in spring!  I have gotten burnt on my feet pretty bad and the back of my neck since I still don't have hair so I have to remember the small areas get burnt too!  Overall I'm looking forward to finding a CURE for this so we can all get back to having a normal life and enjoying every minute of it!!  

      I'm going back to San Fran after the SRS to determine the next step so I will keep ya'll posted.  Also I wanted you all to know that you're all in my heart each and everyday.  We can all beat this!!

      All my best,

      Denise

      • May 9, 2013 at 2:35 am
      DeniseK
      Participant

      Thank you everyone.  I take my'self off the Z for a few days here and there if I'm feeling bad, I know it's risky but I have the arm tumor as a marker.  I only do it if I'm feeling really bad.  They're taking me off Z for the SRS for a week, works out perfect with my cruise so I'm happy about that.  Maybe some of our bodies only need a small dosage?  I don't mind being the guinea pig for this, in my mind I don't have terminal cancer, sometimes I remember Oh yeah I got this melanoma crap but I don't let it rule my life.  Lately I've partaken in a few margaritas to welcome in spring!  I have gotten burnt on my feet pretty bad and the back of my neck since I still don't have hair so I have to remember the small areas get burnt too!  Overall I'm looking forward to finding a CURE for this so we can all get back to having a normal life and enjoying every minute of it!!  

      I'm going back to San Fran after the SRS to determine the next step so I will keep ya'll posted.  Also I wanted you all to know that you're all in my heart each and everyday.  We can all beat this!!

      All my best,

      Denise

        • May 11, 2013 at 5:34 am
        JerryfromFauq
        Participant

        Sounds like a pretty good status.  Enjoy the vacation.  Have you talked to your Doc about the staggered testing being done?

        • May 11, 2013 at 5:34 am
        JerryfromFauq
        Participant

        Sounds like a pretty good status.  Enjoy the vacation.  Have you talked to your Doc about the staggered testing being done?

        • May 11, 2013 at 5:34 am
        JerryfromFauq
        Participant

        Sounds like a pretty good status.  Enjoy the vacation.  Have you talked to your Doc about the staggered testing being done?

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