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Zelboraf/ managing side effects
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Zelboraf/ managing side effects

› Forums › General Melanoma Community › Zelboraf/ managing side effects

  • Post
    • December 28, 2018 at 7:10 pm
    Summer S.
    Participant

      Hi,

      My mom, stage IV, just started with Zelboraf 13 days ago,

      for the first week she took 2 tabs every 12 hours and she was feeling just fine.

      So her doctor increased the dose to 3 tabs every 12 hours and she did not feel so well

      – Significantly decreased appetite

      – Rash and itching all over her body

      – Tirdeness and Sleepliness all day

      – muscle and feet pain

      – Cold like symptoms

       

      has any one had experience managing such side effects or soothing it a bit?

      Do you think this can be temporary?

      has as anyone had experience with Z on reduced dose 2 tabs every 12 hours?

      P.S. unfortunately we cannot add Cotelic at the moment

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    • Replies
        • December 30, 2018 at 6:35 pm
        Liberte121
        Participant

          Summer – I am a stage 4 melanoma patient since May 2016. ( ialso also am fighting lymphoma and fought Bladder cancer in this same time period)I have tried Yervoy, but had to discontinued due to liver toxcity numers, Tried Keytuda, same thing. I have been on Zelboraf and Cotellic now since April 2017. at first we started REAL slow, and I am now at 3 tablets of Zelboraf in the morning and 3 at night with 2 Cotellic. Up until September of this year, I was having nausea, fatigue, pain in my legs and just felt like crap.

          However, we fought my lymphoma this September. My bladder cancer is gone, my lymphoma is stable and my melanoma is stable with zero indications on my scans. TheZelboraf and Cotellic have been  God send. I do not have any symptoms at all. I am now more physically active, and I am regaining my strength.

          My doctor(s) have all told me from early on to stay active – even when you do not feel like it, and that has been a huse reason for success. I havea tee time schedule for January 1st at 11:00 ,( I do cover all my skin as a get sunburned otherswise – even taping over the holes on my golf gloves.

          Best advice is to talk with your doctors for managment of her side effects. eventually they will be managable or go away

          BE POSITIVE AND STAY STRONG. WE CAN BEAT THIS

          Tim G

            • December 30, 2018 at 10:28 pm
            Summer S.
            Participant

              Hi Tim, 

              This is just fantastic news, am so happy for you! 

              and you do radiate positivity that it touched me, I have been feeling really down lately after two consecutive progressions, but your words gave me hope! 

              Bless your beautiful heart, my thoughts and prayers goes to you and to my mom 

            • January 6, 2019 at 9:28 pm
            Kellie-T
            Participant

              Merry I took Zelboraf from February 2012 and stopped December 2016.  Within three months of taking the node shrank to normal.  I started at 8 pills per day and had every side effect.  Stopped for a week and dropped to 6 pills per day.  Stayed on that dose until I stopped treatment.  Managed the side effects well and had no complications.  Over time the side effects became even less.  I remained NED the entire time while on Zelboraf.  After 20-months post Zelboraf I unfortunately am no longer NED.  Three lymph nodes this time and 3 doses of Opdivo didn’t work.  Next in the cue is Braftovi+Mektovi combo.  I hope for nothing but the best with your loved one on Zelboraf.

              • January 7, 2019 at 10:23 pm
              Richard_K
              Participant

                Summer,

                I started on Zelboraf in March 2010 at 960mg twice a day (eight tabs). That was reduced to 720mg twice a day (six tabs) in November 2012 and I continue on that dosage today.

                I had some of your mom's symptoms but today, I only deal with sun sensitivity.  I can also tell you there was significant tumor reduction in just a month.

                This might not help much, but I hope it at least gives you some encouragement.

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