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Zelboraf side effects – trying to decide what to do. Advice anyone?
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Zelboraf side effects – trying to decide what to do. Advice anyone?

› Forums › General Melanoma Community › Zelboraf side effects – trying to decide what to do. Advice anyone?

  • Post
    • August 24, 2012 at 5:15 pm
    Tina D
    Participant

      I am in my 3rd month of Z. Had an incredible report of NED 2 weeks ago ( still thanking the Lord!) smiley. Have had full range of side effects since starting. Bad rash required almost 3 weeks off after 1st week of tx. Back on at 75% dose since then. Symptoms come and go ( though not as much on the going end of things, haha!).

      I am in my 3rd month of Z. Had an incredible report of NED 2 weeks ago ( still thanking the Lord!) smiley. Have had full range of side effects since starting. Bad rash required almost 3 weeks off after 1st week of tx. Back on at 75% dose since then. Symptoms come and go ( though not as much on the going end of things, haha!). I have joint and muscle pain, sore soles of feet ( that has actually improved over past few days for the first time), photosensitivity, lost most of hair, extreme fatigue, nausea and vomiting, and painful red nodules. But last week, I spent about 8 days in a row down in bed or on the couch for the most part. I am NOT a person who likes to sit around, and this is very difficult to have to do ( Mom of 5, with 2 still scool-age and I homeschool). I had decided that come Monday, I'd call Dr if things hadnt changed. I had pretty good days Mon-Wed evening. Yesterday not so great, and last night temp of 101.2, and N/V, aches, ec. I currently have abt 20 of those painful red nodules.I try to avoid Ibuprofen, ec, for the sake of my liver. I also hate to be a baby abt any of it! I am so thankful to be where I am! But…. should I call the onco? I am his only pt on the drug. He is fanastic, but I do frequent this board to see what others are doing and how hey are making out. Has anyone else had problems with the side effects staying tolerable? If so, what did your Dr recommend? I think the pain and fatigue are my 2 biggest concerns here, and I am perfectly willing to coninue on just as is, if needed. But just wanted to see what everyone else has experienced, and see if there may be something that would help me out.I do take phenergan when the n/v get bad enough, but it puts me to sleep, so I try to avoid it as much as possible.

      Thanks all. Any input is greatly appreciated,

      Tina

    Viewing 14 reply threads
    • Replies
        • August 24, 2012 at 6:40 pm
        awillett1991
        Participant
          Tina – I seem to be in a pattern where I need a few days off (last week missed 5 doses) when side effects get to “incapacitating” then I am back on and good to go for awhile. I have 3 school age kids, its hard.

          In July I was really sick – went off 3 days, a week on half dose, then back to my 3 twice a day. My doc says it stays in your system a couple of weeks, so missing a couple of days is no big deal. He is also treating someone 1wk on/ 1 wk off – her symptoms were so bad and apparently she is doing well. I do take Aleve daily for random aches & pains and also 5 mg prednisone. Rash is hardly noticeable now but onc/derm will not let me taper off pred since it was so severe at first.

          Check my profile. Hope it helps. It sounds like our symptoms are a lot alike. Definitely call.

          • August 24, 2012 at 6:40 pm
          awillett1991
          Participant
            Tina – I seem to be in a pattern where I need a few days off (last week missed 5 doses) when side effects get to “incapacitating” then I am back on and good to go for awhile. I have 3 school age kids, its hard.

            In July I was really sick – went off 3 days, a week on half dose, then back to my 3 twice a day. My doc says it stays in your system a couple of weeks, so missing a couple of days is no big deal. He is also treating someone 1wk on/ 1 wk off – her symptoms were so bad and apparently she is doing well. I do take Aleve daily for random aches & pains and also 5 mg prednisone. Rash is hardly noticeable now but onc/derm will not let me taper off pred since it was so severe at first.

            Check my profile. Hope it helps. It sounds like our symptoms are a lot alike. Definitely call.

            • August 24, 2012 at 6:40 pm
            awillett1991
            Participant
              Tina – I seem to be in a pattern where I need a few days off (last week missed 5 doses) when side effects get to “incapacitating” then I am back on and good to go for awhile. I have 3 school age kids, its hard.

              In July I was really sick – went off 3 days, a week on half dose, then back to my 3 twice a day. My doc says it stays in your system a couple of weeks, so missing a couple of days is no big deal. He is also treating someone 1wk on/ 1 wk off – her symptoms were so bad and apparently she is doing well. I do take Aleve daily for random aches & pains and also 5 mg prednisone. Rash is hardly noticeable now but onc/derm will not let me taper off pred since it was so severe at first.

              Check my profile. Hope it helps. It sounds like our symptoms are a lot alike. Definitely call.

                • August 24, 2012 at 6:45 pm
                awillett1991
                Participant
                  Would also add my onc has been very firm with me during these “episodes” – he feels the half dose is not effective and I either take 6 pills a day and stay there a while, or not take it at all. Good luck – let me know!
                  • August 24, 2012 at 10:26 pm
                  Tina D
                  Participant

                    Thank you so much… this advice is very helpful. I did call my onc and spoke with the nurse. The Dr ordered a round of antibiotics to try. It was not what I was expecting, but the funny thing is that in the hours that followed, my voice began to get hoarse. Went and looked in the mirror… sure enough, blisters and red throat. Not sure if this is the cause of the extra fatigue, etc… but it is a starting point for now. If I still feel crummy by Monday, I will poss ask abt the idea of a small time off. Having chills now and temp is going up again. It will be a lazy evening for sure. 

                    I csnt say how much I appreciate having this board here, and the help of others.

                    Thank you!

                    • August 24, 2012 at 10:26 pm
                    Tina D
                    Participant

                      Thank you so much… this advice is very helpful. I did call my onc and spoke with the nurse. The Dr ordered a round of antibiotics to try. It was not what I was expecting, but the funny thing is that in the hours that followed, my voice began to get hoarse. Went and looked in the mirror… sure enough, blisters and red throat. Not sure if this is the cause of the extra fatigue, etc… but it is a starting point for now. If I still feel crummy by Monday, I will poss ask abt the idea of a small time off. Having chills now and temp is going up again. It will be a lazy evening for sure. 

                      I csnt say how much I appreciate having this board here, and the help of others.

                      Thank you!

                      • August 24, 2012 at 10:26 pm
                      Tina D
                      Participant

                        Thank you so much… this advice is very helpful. I did call my onc and spoke with the nurse. The Dr ordered a round of antibiotics to try. It was not what I was expecting, but the funny thing is that in the hours that followed, my voice began to get hoarse. Went and looked in the mirror… sure enough, blisters and red throat. Not sure if this is the cause of the extra fatigue, etc… but it is a starting point for now. If I still feel crummy by Monday, I will poss ask abt the idea of a small time off. Having chills now and temp is going up again. It will be a lazy evening for sure. 

                        I csnt say how much I appreciate having this board here, and the help of others.

                        Thank you!

                        • August 24, 2012 at 6:45 pm
                        awillett1991
                        Participant
                          Would also add my onc has been very firm with me during these “episodes” – he feels the half dose is not effective and I either take 6 pills a day and stay there a while, or not take it at all. Good luck – let me know!
                          • August 24, 2012 at 6:45 pm
                          awillett1991
                          Participant
                            Would also add my onc has been very firm with me during these “episodes” – he feels the half dose is not effective and I either take 6 pills a day and stay there a while, or not take it at all. Good luck – let me know!
                            • August 30, 2012 at 9:07 pm
                            Tina D
                            Participant

                              Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                              Thank you, again,

                              Tina

                              • August 30, 2012 at 9:07 pm
                              Tina D
                              Participant

                                Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                                Thank you, again,

                                Tina

                                • August 30, 2012 at 9:07 pm
                                Tina D
                                Participant

                                  Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                                  Thank you, again,

                                  Tina

                                • August 24, 2012 at 6:59 pm
                                WayneG
                                Participant

                                  I've been on Zel since 4/23.  After 2 weeks I started running a temp for several days actually.  I was told ( melanoma specialist at MD Andersons ) if it reached 101, stop taking Zel and go to the local ER which I did.  Hospital for 3 days, bag of antibiotics, CT scan, everything clear, started Zel again after 2 days, full dose, and no fever since then.  For me after 3 months (about) the side effects diminished except hair loss, some fatigue, some rash, some joint pain – the usual.

                                  They also told me not to take anything – Tylenol, Ibuprofin, etc – to break the fever because they wanted to know what was causing it.

                                  I would definitely let your oncologist know about the fever for sure.

                                    • August 24, 2012 at 10:29 pm
                                    Tina D
                                    Participant

                                      Thank you, I did call the Dr ( see explanation above). I will be sure to watch my temp over the weekend, and call the on-call onc if needed. Thank you so much for the helpful advice.

                                      I am hoping that soon the overall symptoms will lessen as many have said they experience. 

                                      Thank you, again!

                                      • August 24, 2012 at 10:29 pm
                                      Tina D
                                      Participant

                                        Thank you, I did call the Dr ( see explanation above). I will be sure to watch my temp over the weekend, and call the on-call onc if needed. Thank you so much for the helpful advice.

                                        I am hoping that soon the overall symptoms will lessen as many have said they experience. 

                                        Thank you, again!

                                        • August 24, 2012 at 10:29 pm
                                        Tina D
                                        Participant

                                          Thank you, I did call the Dr ( see explanation above). I will be sure to watch my temp over the weekend, and call the on-call onc if needed. Thank you so much for the helpful advice.

                                          I am hoping that soon the overall symptoms will lessen as many have said they experience. 

                                          Thank you, again!

                                        • August 24, 2012 at 6:59 pm
                                        WayneG
                                        Participant

                                          I've been on Zel since 4/23.  After 2 weeks I started running a temp for several days actually.  I was told ( melanoma specialist at MD Andersons ) if it reached 101, stop taking Zel and go to the local ER which I did.  Hospital for 3 days, bag of antibiotics, CT scan, everything clear, started Zel again after 2 days, full dose, and no fever since then.  For me after 3 months (about) the side effects diminished except hair loss, some fatigue, some rash, some joint pain – the usual.

                                          They also told me not to take anything – Tylenol, Ibuprofin, etc – to break the fever because they wanted to know what was causing it.

                                          I would definitely let your oncologist know about the fever for sure.

                                          • August 24, 2012 at 6:59 pm
                                          WayneG
                                          Participant

                                            I've been on Zel since 4/23.  After 2 weeks I started running a temp for several days actually.  I was told ( melanoma specialist at MD Andersons ) if it reached 101, stop taking Zel and go to the local ER which I did.  Hospital for 3 days, bag of antibiotics, CT scan, everything clear, started Zel again after 2 days, full dose, and no fever since then.  For me after 3 months (about) the side effects diminished except hair loss, some fatigue, some rash, some joint pain – the usual.

                                            They also told me not to take anything – Tylenol, Ibuprofin, etc – to break the fever because they wanted to know what was causing it.

                                            I would definitely let your oncologist know about the fever for sure.

                                            • August 24, 2012 at 11:25 pm
                                            s Mom
                                            Participant

                                              Hi Tina,

                                              Your side effects sound very similar to my son's.  He had to stop for a week, go on steroids and then went back on full dose.  Joint pain, hair loss and rash…pretty much what everyone else has said.  I think you should call your onc about the fever…play it safe 🙂  God Bless.

                                              Bridgette (Jeff's Mom)

                                              • August 24, 2012 at 11:25 pm
                                              s Mom
                                              Participant

                                                Hi Tina,

                                                Your side effects sound very similar to my son's.  He had to stop for a week, go on steroids and then went back on full dose.  Joint pain, hair loss and rash…pretty much what everyone else has said.  I think you should call your onc about the fever…play it safe 🙂  God Bless.

                                                Bridgette (Jeff's Mom)

                                                • August 24, 2012 at 11:25 pm
                                                s Mom
                                                Participant

                                                  Hi Tina,

                                                  Your side effects sound very similar to my son's.  He had to stop for a week, go on steroids and then went back on full dose.  Joint pain, hair loss and rash…pretty much what everyone else has said.  I think you should call your onc about the fever…play it safe 🙂  God Bless.

                                                  Bridgette (Jeff's Mom)

                                                  • August 26, 2012 at 2:49 am
                                                  Bruce Davis
                                                  Participant
                                                    The oncology drs have so many different CAs to deal with and Z being so new, I’ve gotten good info from the Z nurses. They are on call 24 hrs. # @ the Z website.
                                                    Hope you get over this hump and feel better!
                                                    Bruce
                                                    • August 26, 2012 at 2:49 am
                                                    Bruce Davis
                                                    Participant
                                                      The oncology drs have so many different CAs to deal with and Z being so new, I’ve gotten good info from the Z nurses. They are on call 24 hrs. # @ the Z website.
                                                      Hope you get over this hump and feel better!
                                                      Bruce
                                                      • August 26, 2012 at 2:49 am
                                                      Bruce Davis
                                                      Participant
                                                        The oncology drs have so many different CAs to deal with and Z being so new, I’ve gotten good info from the Z nurses. They are on call 24 hrs. # @ the Z website.
                                                        Hope you get over this hump and feel better!
                                                        Bruce
                                                        • August 30, 2012 at 9:09 pm
                                                        Tina D
                                                        Participant

                                                           

                                                          Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                                                          Thank you, again,

                                                          Tina

                                                          • August 30, 2012 at 9:09 pm
                                                          Tina D
                                                          Participant

                                                             

                                                            Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                                                            Thank you, again,

                                                            Tina

                                                            • August 30, 2012 at 9:09 pm
                                                            Tina D
                                                            Participant

                                                               

                                                              Well, my fever subsided after 2nd day of Keflex, but I continue to feel pretty yucky. Spoke with my Drs office today and Dr has given me a week off. I feel so excited about it! It is like I have been given a luxury vacation or something 🙂    . I am to call next week to let them know how I am feeling, then they will decide what to do from there. Thank you to everyone for the advice… it helps SO much! Plus, it helps to know I am not unusual in my symptoms.

                                                              Thank you, again,

                                                              Tina

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