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Zelboraf. 6 days in and side affects

Forums General Melanoma Community Zelboraf. 6 days in and side affects

  • This topic has 30 replies, 8 voices, and was last updated 9 years ago by Ali.
  • Post
    Karin L
    Participant

      I thought I was doing great until the 6th day of taking Zelboraf.  I was taking 4 pills twice a day.  Is this the normal dosage?  Started with fever of 102+ which I have actually been battling up and down for 3 -4 days now.  Also, I have a chicken pox type rash all over my head, ears, neck, back, arms, and belly.  My eyes became really droopy and bloodshot which the nurse said was totally from the Z.  Script for prednisone for the eyes.  Does all this sound like what others have experienced as side affects?  How do you handle it day after day?&nb

      I thought I was doing great until the 6th day of taking Zelboraf.  I was taking 4 pills twice a day.  Is this the normal dosage?  Started with fever of 102+ which I have actually been battling up and down for 3 -4 days now.  Also, I have a chicken pox type rash all over my head, ears, neck, back, arms, and belly.  My eyes became really droopy and bloodshot which the nurse said was totally from the Z.  Script for prednisone for the eyes.  Does all this sound like what others have experienced as side affects?  How do you handle it day after day?  I cannot imagine having  this chicken pox itchy rash  every day.  They did take me off the Z for the weekend and we will reevaluate on Monday.  Nothing has changed though *sigh*. 

      BTW, I haven't updated lately and some requested I keep them posted.  Been a rough last couple of months.  Mel went into the lower L5 area of the spine and is pressing on the sciatic nerve in my right leg.  Also has a lesion on the sternum.  Radiated both areas and it didn't do much.  Pain became so severe I was hospitalized to get it under control.  I have an amazing pain Dr. who just did not stop until we checked every avenue of treatment to help the pain.  (I was at a different hosp. than my onc's.)  Very close to permanent paralysis after the MRI'S and CT's.  Unfortunately, where the mel is makes it too risky to try most treatments.  So, we went off the ipi and on the Zelboraf since time was not on my side.  The pain is under control and 2wks ago I could barely walk….now I am doing great walking with assistance (walker or cane). 

       

      Karin

    Viewing 26 reply threads
    • Replies
        aldakota22
        Participant

          Good to see you posting again.Stay tough.I am on " Z" one  year tomorrow.It has been working super for me .Still trying to get my latest scans from Aug.22, read fully.Hopefully i will be NED sometime this week.The side effects with "Z" are different for everyone.The full dose is 4pills a day twice.One thing I can tell you is that the side effects of the drug do not seem permanent in most instances.They usually hang around from a few weeks to 3 or 4 months before dissappearing.They will then sometimes reapear again only to dissapear .From what I have read some docs. will give you a vacation off the drug or may reduce the doseage to help cope with the side effects.Will always keep you in my prayers that the"Z" working for you gets you through your pain.Beat the Beast.   Al

          aldakota22
          Participant

            Good to see you posting again.Stay tough.I am on " Z" one  year tomorrow.It has been working super for me .Still trying to get my latest scans from Aug.22, read fully.Hopefully i will be NED sometime this week.The side effects with "Z" are different for everyone.The full dose is 4pills a day twice.One thing I can tell you is that the side effects of the drug do not seem permanent in most instances.They usually hang around from a few weeks to 3 or 4 months before dissappearing.They will then sometimes reapear again only to dissapear .From what I have read some docs. will give you a vacation off the drug or may reduce the doseage to help cope with the side effects.Will always keep you in my prayers that the"Z" working for you gets you through your pain.Beat the Beast.   Al

            aldakota22
            Participant

              Good to see you posting again.Stay tough.I am on " Z" one  year tomorrow.It has been working super for me .Still trying to get my latest scans from Aug.22, read fully.Hopefully i will be NED sometime this week.The side effects with "Z" are different for everyone.The full dose is 4pills a day twice.One thing I can tell you is that the side effects of the drug do not seem permanent in most instances.They usually hang around from a few weeks to 3 or 4 months before dissappearing.They will then sometimes reapear again only to dissapear .From what I have read some docs. will give you a vacation off the drug or may reduce the doseage to help cope with the side effects.Will always keep you in my prayers that the"Z" working for you gets you through your pain.Beat the Beast.   Al

              awillett1991
              Participant
                Karin,
                Hang in there, so many people have to go off temporarily, lower the dosage, etc – chck my profile. I am past the worst of it, and it worked great on my brain and heart tumor (not a lot of choices on that one).

                After. 5 mos though, am switching to IPI, have lymph nodes lighting up in my chest/abdomen. Keep fighting!!

                awillett1991
                Participant
                  Karin,
                  Hang in there, so many people have to go off temporarily, lower the dosage, etc – chck my profile. I am past the worst of it, and it worked great on my brain and heart tumor (not a lot of choices on that one).

                  After. 5 mos though, am switching to IPI, have lymph nodes lighting up in my chest/abdomen. Keep fighting!!

                  awillett1991
                  Participant
                    Karin,
                    Hang in there, so many people have to go off temporarily, lower the dosage, etc – chck my profile. I am past the worst of it, and it worked great on my brain and heart tumor (not a lot of choices on that one).

                    After. 5 mos though, am switching to IPI, have lymph nodes lighting up in my chest/abdomen. Keep fighting!!

                    lhaley
                    Participant

                      Karin,

                      I started Zelboraf a little more than 2 weeks ago.  First after a week had horrible indigestion and was already taking nexium and mylanta. They added carafate to that.  At 2 weeks I started with hives.  They first tried benedryl and hydrocordisone.  I also used oatmeal bath (find it in the baby area — it was the best that helped me).  When I called the dr again they took me off of the zel and they upped be back on the dex.  Was told that I had to stay off till rash was totally gone. Took 4.5 days and now I'm on 3 pill 2 times a day.  They are already sending me to the dematologist because as the hives went away it left blisters and tag moles and the onc wants it all removed.  He took pictures of the hives.    The hives started on my back and ended everywhere!!!!   I never got fevers but I did get sores in the mouth and the bottom of the feet hurt some so bad that I could walk!   My eyes are kind of bluery also but I believe it's the dex (brain mets) and are still weaning from the bleed.  

                      This is my e-mail so we can get intouch since we both started it about the same.  We can complain together!   I did get some of the clothing all of the internet.

                      Linda

                      [email protected]

                      lhaley
                      Participant

                        Karin,

                        I started Zelboraf a little more than 2 weeks ago.  First after a week had horrible indigestion and was already taking nexium and mylanta. They added carafate to that.  At 2 weeks I started with hives.  They first tried benedryl and hydrocordisone.  I also used oatmeal bath (find it in the baby area — it was the best that helped me).  When I called the dr again they took me off of the zel and they upped be back on the dex.  Was told that I had to stay off till rash was totally gone. Took 4.5 days and now I'm on 3 pill 2 times a day.  They are already sending me to the dematologist because as the hives went away it left blisters and tag moles and the onc wants it all removed.  He took pictures of the hives.    The hives started on my back and ended everywhere!!!!   I never got fevers but I did get sores in the mouth and the bottom of the feet hurt some so bad that I could walk!   My eyes are kind of bluery also but I believe it's the dex (brain mets) and are still weaning from the bleed.  

                        This is my e-mail so we can get intouch since we both started it about the same.  We can complain together!   I did get some of the clothing all of the internet.

                        Linda

                        [email protected]

                        lhaley
                        Participant

                          Karin,

                          I started Zelboraf a little more than 2 weeks ago.  First after a week had horrible indigestion and was already taking nexium and mylanta. They added carafate to that.  At 2 weeks I started with hives.  They first tried benedryl and hydrocordisone.  I also used oatmeal bath (find it in the baby area — it was the best that helped me).  When I called the dr again they took me off of the zel and they upped be back on the dex.  Was told that I had to stay off till rash was totally gone. Took 4.5 days and now I'm on 3 pill 2 times a day.  They are already sending me to the dematologist because as the hives went away it left blisters and tag moles and the onc wants it all removed.  He took pictures of the hives.    The hives started on my back and ended everywhere!!!!   I never got fevers but I did get sores in the mouth and the bottom of the feet hurt some so bad that I could walk!   My eyes are kind of bluery also but I believe it's the dex (brain mets) and are still weaning from the bleed.  

                          This is my e-mail so we can get intouch since we both started it about the same.  We can complain together!   I did get some of the clothing all of the internet.

                          Linda

                          [email protected]

                            awillett1991
                            Participant
                              Linda- I’ve had really dry eyes that caused them to be blurry. Try OTC drops. Some are stronger, a gel that works at night, which makes them blurry but use right before going to bed. Those seem to work the best for me and my eyes are better in the morning!

                              My derm took pics of my rash too. Not exactly comforting ha ha!

                              awillett1991
                              Participant
                                Linda- I’ve had really dry eyes that caused them to be blurry. Try OTC drops. Some are stronger, a gel that works at night, which makes them blurry but use right before going to bed. Those seem to work the best for me and my eyes are better in the morning!

                                My derm took pics of my rash too. Not exactly comforting ha ha!

                                awillett1991
                                Participant
                                  Linda- I’ve had really dry eyes that caused them to be blurry. Try OTC drops. Some are stronger, a gel that works at night, which makes them blurry but use right before going to bed. Those seem to work the best for me and my eyes are better in the morning!

                                  My derm took pics of my rash too. Not exactly comforting ha ha!

                                dellriol
                                Participant

                                  I started zel at 4 pills 2x a day.  Had the awful rash, easy sunburn. heartburn, diarrhea, exhaustion.  Then the fever about a month in.  Turned out I was having a drug interaction that was messing up my liver.  I was off until my liver cleared up, then went back on  3 pills 2x a day.  No where near the side effects.  Kind of dry skin rash, not much itch, no fevers, etc. Just some arthritis kind of pain and thinning hair.And it is still working.   Dose can be effective at 2 pills 2x a day. It is very important to let Dr. know all you are going through, so they can adjust if needed.

                                  dellriol
                                  Participant

                                    I started zel at 4 pills 2x a day.  Had the awful rash, easy sunburn. heartburn, diarrhea, exhaustion.  Then the fever about a month in.  Turned out I was having a drug interaction that was messing up my liver.  I was off until my liver cleared up, then went back on  3 pills 2x a day.  No where near the side effects.  Kind of dry skin rash, not much itch, no fevers, etc. Just some arthritis kind of pain and thinning hair.And it is still working.   Dose can be effective at 2 pills 2x a day. It is very important to let Dr. know all you are going through, so they can adjust if needed.

                                    dellriol
                                    Participant

                                      I started zel at 4 pills 2x a day.  Had the awful rash, easy sunburn. heartburn, diarrhea, exhaustion.  Then the fever about a month in.  Turned out I was having a drug interaction that was messing up my liver.  I was off until my liver cleared up, then went back on  3 pills 2x a day.  No where near the side effects.  Kind of dry skin rash, not much itch, no fevers, etc. Just some arthritis kind of pain and thinning hair.And it is still working.   Dose can be effective at 2 pills 2x a day. It is very important to let Dr. know all you are going through, so they can adjust if needed.

                                      Tina D
                                      Participant

                                        Karin,

                                        Like many others, I had a horrible spreading rash at one week in on full dose ( 4 pills 2 times/day). I had to be taken off for 2 weeks & was given steroids during the first part of that time. I ended up in the ER due to the severe nature of the rash. Some rash is normal side effect and tends to level out, but others seem to just continue to get worse without some attention. Mine was INTENSELY itchy. Colloidal oatmeal baths using water that is BARELY warm – as cool as you can stand it- brought me the most relief. Blot dry gently with soft towel.Avoiding any heat. Definitely NO sun exposure. After a litle over 2 weeks, my rash had cleared enough to attempt a restart at 3 pills 2 times/day. No more big issue with the rash since then. And… the reduced dosage has been effective for me, as well as others I have seen on here. I have found it SO helpful to talk with everyone here when going through the various side effects and trying to figure out if it is "normal" or reason for concern! Hang in there! 

                                        Tina 

                                        Tina D
                                        Participant

                                          Karin,

                                          Like many others, I had a horrible spreading rash at one week in on full dose ( 4 pills 2 times/day). I had to be taken off for 2 weeks & was given steroids during the first part of that time. I ended up in the ER due to the severe nature of the rash. Some rash is normal side effect and tends to level out, but others seem to just continue to get worse without some attention. Mine was INTENSELY itchy. Colloidal oatmeal baths using water that is BARELY warm – as cool as you can stand it- brought me the most relief. Blot dry gently with soft towel.Avoiding any heat. Definitely NO sun exposure. After a litle over 2 weeks, my rash had cleared enough to attempt a restart at 3 pills 2 times/day. No more big issue with the rash since then. And… the reduced dosage has been effective for me, as well as others I have seen on here. I have found it SO helpful to talk with everyone here when going through the various side effects and trying to figure out if it is "normal" or reason for concern! Hang in there! 

                                          Tina 

                                          Tina D
                                          Participant

                                            Karin,

                                            Like many others, I had a horrible spreading rash at one week in on full dose ( 4 pills 2 times/day). I had to be taken off for 2 weeks & was given steroids during the first part of that time. I ended up in the ER due to the severe nature of the rash. Some rash is normal side effect and tends to level out, but others seem to just continue to get worse without some attention. Mine was INTENSELY itchy. Colloidal oatmeal baths using water that is BARELY warm – as cool as you can stand it- brought me the most relief. Blot dry gently with soft towel.Avoiding any heat. Definitely NO sun exposure. After a litle over 2 weeks, my rash had cleared enough to attempt a restart at 3 pills 2 times/day. No more big issue with the rash since then. And… the reduced dosage has been effective for me, as well as others I have seen on here. I have found it SO helpful to talk with everyone here when going through the various side effects and trying to figure out if it is "normal" or reason for concern! Hang in there! 

                                            Tina 

                                            doriniel
                                            Participant

                                              I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                              doriniel
                                              Participant

                                                I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                                doriniel
                                                Participant

                                                  I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                                  doriniel
                                                  Participant

                                                    I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                                    doriniel
                                                    Participant

                                                      I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                                      doriniel
                                                      Participant

                                                        I had similar experience had been on Zelboraf about 10 days and had terrible reaction full body rash, fever of 105, nausea and vomiting. Stopped the medication for 6 seeks restarted on half dose. Have been on for one year. Have had to stop the medication a few times once for low white count, once for high liver enzymes, and once due to hobble feet pain. Each time I would restart 2-3 weeks later on the two pills twice daily. Seems like the medication is working last scan in May all my tumors were gone or shrinking. Had one in my chest that had not changed (this one was easily palpable. I know cannot feel the one in my chest so i"m hopeful my scan next month will be good. The side effects i'm still  struggling with is pain on the soles of my feet and lack of energy. But i am doing much better.

                                                        Eileen L
                                                        Participant

                                                          Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

                                                          I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

                                                          Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

                                                          Eileen L

                                                           

                                                          Eileen L
                                                          Participant

                                                            Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

                                                            I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

                                                            Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

                                                            Eileen L

                                                             

                                                            Eileen L
                                                            Participant

                                                              Karin, as others have already indicated, my experience with side effects from Z have been of the waxing and waning variety. After about one week on the drug I had a terrible rash, sounds very similar to yours. Then I had fever/chills, sores in my mouth, aching joints, fatigue, etc. You name it, I was hit with it all in a weeks period. Then they dissipated over a weeks time, and since those first episodes I have had periods of rash, chills, joint pain, etc. intermittently. Never quite as bad as the first time. I am also on a MEK inhibitor since I am doing a clinical trial, so that may be helping with keeping the severity of some of the reaction down. The one side effect that is always with me is the sun sensitivity, both skin (last week I had a very bad allergic type reaction to the sun despite being covered in either sun protecting clothing or sun screen over every inch of my body) and eyes. Turning the lights on in a room is sometimes irritiating to my eyes!

                                                              I was able to tolerate the skin rash and mouth sores until they subsided without having my drug dose decrease. One of the reasons it came down that way for me is that I happened to be visiting friends in Portland when the side effects were at their worse. Now I have a corticosteroid ointment and antibiotics that I am suppose to start if the skin rash becomes problematic!

                                                              Hang in there. Hope by now you are having some relief from the side effects. I also took oatmeal baths, you can get packets of very finely ground oatmeal at the drug store to put into your bath water. They were very soothing and helped with the itchiness, at least temporarily. Now I take them because they leave my skin so smooth!

                                                              Eileen L

                                                               

                                                              Ali
                                                              Participant

                                                                Hope things improve over the weekend, and the Z can wipe out your cancer.  I think of you often. 

                                                                Prayers,

                                                                Ali

                                                                Ali
                                                                Participant

                                                                  Hope things improve over the weekend, and the Z can wipe out your cancer.  I think of you often. 

                                                                  Prayers,

                                                                  Ali

                                                                  Ali
                                                                  Participant

                                                                    Hope things improve over the weekend, and the Z can wipe out your cancer.  I think of you often. 

                                                                    Prayers,

                                                                    Ali

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