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Side Effects of Zelboraf – Urgent Help

Forums General Melanoma Community Side Effects of Zelboraf – Urgent Help

  • Post
    carpediemtr
    Participant

      Hello. I just found this site recently after that Metastatic Melonoma was diagnosed on my brother (lungs) at second half of July 2013.

      First he started to take temodar in August and completed first cycle. Then, according to positive braf result, he started to take Zelboraf last Thursday (12th of Sep.)

      After about 4 or five days, allergic reactions started to happen on his body. Then yesterday, his hands, face, neck all became red and we diagnosed rash on his upper body. Then, today rashes diffused all over his body. Also he has fever and nausea today.

      After communication with our oncologist (but he hadn't worked with any braf patient until my brother), he suggested to stop medicine. On the other hand, we asked for advice of another oncologist who study about Zelboraf, stated that if we see this kind of side effects, it would mean that Zelboraf is effective on melanoma and suggests not to stop, but maybe reduce the dose.

      So now we have a dilemma about the decision. Has anybody experienced the same side effects here? And what was the solution? If these effects continue and grow, should we stop the Zelboraf and will not take again? Could you please help us? We need your urgent advice.

      Thank you in advance.

    Viewing 5 reply threads
    • Replies
        joycedixon
        Participant

          Zelboraf has side effects.I would not stop .

          I have had skin problems and see my dermatologist every 6 weeks.

          He mentioned that it seemed that people who had skin problems  responded well.

          THis was just a comment but worth thinking about.

          I had joint problems the first two months that really limited me.

          I walk carefully –steps-threshholds–in and out of cars so I do not strain my knees

          no problem walking flat ground

          First PET after 5 months lesions on liver and lung were gone.

          I am losing hair and it suddenly turned fuzzy recently.However,with the success

          and future success I pray–I  will stay on the zelboraf.I still take 4 two times per day

          There are side effects but prayers that they are worth it.Read other peoples' notes

          on their experiences.

            Janner
            Participant

              You can call the hotline for the BRAF drug.  Otherwise, I would make sure you are talking to a doc who regularly prescribes this.  If it means your local onc has to conference with someone else, do that.  This drug has side effects but for most, they can be manageable.  But if your doc has never dealt with them before, get advice from a doc or the manufacturer. 

              Janner
              Participant

                You can call the hotline for the BRAF drug.  Otherwise, I would make sure you are talking to a doc who regularly prescribes this.  If it means your local onc has to conference with someone else, do that.  This drug has side effects but for most, they can be manageable.  But if your doc has never dealt with them before, get advice from a doc or the manufacturer. 

                Janner
                Participant

                  You can call the hotline for the BRAF drug.  Otherwise, I would make sure you are talking to a doc who regularly prescribes this.  If it means your local onc has to conference with someone else, do that.  This drug has side effects but for most, they can be manageable.  But if your doc has never dealt with them before, get advice from a doc or the manufacturer. 

                  carpediemtr
                  Participant

                    joycedixon, to manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                    joycedixon
                    Participant

                      A rash that began soon after I started went away in a few weeks.I did not have any severe itching .I use Gold Bond, which is a brand name, for what little I had.

                      The dermatologist  burns off most of the spots that appear with liquid nitrogen I believe.

                      Most of my spots have been little and wart like .They usually need treated twice .He said there is a close relationship between squamous skin cancer and warts.He biopsied 5 spots in July-the two that looked minor were removed later surgically.One was sqaumous and one was basal..One had popped up two days before my appointment..He said his job is to zap them before they need excised.

                      The skin issues are also a side effect of zelboraf.My regular dermatologist just happens to work some with my cancer center doctors so he is familiar with zelboraf.I have seen posts where people said their doctors were not familiar with the med.

                       I take a 50,000 vitamin D3 prescription every two weeks–many sources recommend vit D for cancer patients.I take a turmeric capsule on my own.I drink organic whole milk.I try to eat many vegetables like broccoli,cooked tomatoes –and any that articles recommend  –and seem to need protein too–eating well makes me feel better.I don't do as much as I had hoped to because your energy level is down some and eating well involves shopping -preparing ,cooking and dishes–I do believe it is important though

                      Pharmacist from company that calls does not want me to drink alcohol at all(not even the drink I enjoyed eating out once a month)

                      I also think about interactions from taking other herbs or meds.The nurse said some people take way too many so be cautious.

                      I took ibuprofen for joint pain and they switched me to Advil because of possible kidney effects.However the pharmacist said they were in the same family so… anyway I only take if I need too.

                      I hope your brother feels better soon.I feel better than I expected to feel but  do have to do less than I used to.

                       

                      joycedixon
                      Participant

                        A rash that began soon after I started went away in a few weeks.I did not have any severe itching .I use Gold Bond, which is a brand name, for what little I had.

                        The dermatologist  burns off most of the spots that appear with liquid nitrogen I believe.

                        Most of my spots have been little and wart like .They usually need treated twice .He said there is a close relationship between squamous skin cancer and warts.He biopsied 5 spots in July-the two that looked minor were removed later surgically.One was sqaumous and one was basal..One had popped up two days before my appointment..He said his job is to zap them before they need excised.

                        The skin issues are also a side effect of zelboraf.My regular dermatologist just happens to work some with my cancer center doctors so he is familiar with zelboraf.I have seen posts where people said their doctors were not familiar with the med.

                         I take a 50,000 vitamin D3 prescription every two weeks–many sources recommend vit D for cancer patients.I take a turmeric capsule on my own.I drink organic whole milk.I try to eat many vegetables like broccoli,cooked tomatoes –and any that articles recommend  –and seem to need protein too–eating well makes me feel better.I don't do as much as I had hoped to because your energy level is down some and eating well involves shopping -preparing ,cooking and dishes–I do believe it is important though

                        Pharmacist from company that calls does not want me to drink alcohol at all(not even the drink I enjoyed eating out once a month)

                        I also think about interactions from taking other herbs or meds.The nurse said some people take way too many so be cautious.

                        I took ibuprofen for joint pain and they switched me to Advil because of possible kidney effects.However the pharmacist said they were in the same family so… anyway I only take if I need too.

                        I hope your brother feels better soon.I feel better than I expected to feel but  do have to do less than I used to.

                         

                        joycedixon
                        Participant

                          A rash that began soon after I started went away in a few weeks.I did not have any severe itching .I use Gold Bond, which is a brand name, for what little I had.

                          The dermatologist  burns off most of the spots that appear with liquid nitrogen I believe.

                          Most of my spots have been little and wart like .They usually need treated twice .He said there is a close relationship between squamous skin cancer and warts.He biopsied 5 spots in July-the two that looked minor were removed later surgically.One was sqaumous and one was basal..One had popped up two days before my appointment..He said his job is to zap them before they need excised.

                          The skin issues are also a side effect of zelboraf.My regular dermatologist just happens to work some with my cancer center doctors so he is familiar with zelboraf.I have seen posts where people said their doctors were not familiar with the med.

                           I take a 50,000 vitamin D3 prescription every two weeks–many sources recommend vit D for cancer patients.I take a turmeric capsule on my own.I drink organic whole milk.I try to eat many vegetables like broccoli,cooked tomatoes –and any that articles recommend  –and seem to need protein too–eating well makes me feel better.I don't do as much as I had hoped to because your energy level is down some and eating well involves shopping -preparing ,cooking and dishes–I do believe it is important though

                          Pharmacist from company that calls does not want me to drink alcohol at all(not even the drink I enjoyed eating out once a month)

                          I also think about interactions from taking other herbs or meds.The nurse said some people take way too many so be cautious.

                          I took ibuprofen for joint pain and they switched me to Advil because of possible kidney effects.However the pharmacist said they were in the same family so… anyway I only take if I need too.

                          I hope your brother feels better soon.I feel better than I expected to feel but  do have to do less than I used to.

                           

                          carpediemtr
                          Participant

                            joycedixon, to manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                            carpediemtr
                            Participant

                              joycedixon, to manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                              Tina D
                              Participant

                                Yes, I had exactly the same reaction within the first week. The nurses in the emergency room told me to be sure noone ever prescribed this med for me again ( haha). I was taken off it for 2 weeks until the rash mostly subsided. I was on prednisone, and meds for the itching and took frequent tepid water oatmeal baths. It was really quite miserable. But after the 2 weeks, I was restarted on 75% dosage and did not have a recurrence of rash on that level again. So, just because there is a severe reaction to start does not NECESSARILY mean he will be unable to take it at all. by the way.. at the 75% dosage I had a complete response at my 8 wk scans.

                                Tina

                                Tina D
                                Participant

                                  Yes, I had exactly the same reaction within the first week. The nurses in the emergency room told me to be sure noone ever prescribed this med for me again ( haha). I was taken off it for 2 weeks until the rash mostly subsided. I was on prednisone, and meds for the itching and took frequent tepid water oatmeal baths. It was really quite miserable. But after the 2 weeks, I was restarted on 75% dosage and did not have a recurrence of rash on that level again. So, just because there is a severe reaction to start does not NECESSARILY mean he will be unable to take it at all. by the way.. at the 75% dosage I had a complete response at my 8 wk scans.

                                  Tina

                                  Tina D
                                  Participant

                                    Yes, I had exactly the same reaction within the first week. The nurses in the emergency room told me to be sure noone ever prescribed this med for me again ( haha). I was taken off it for 2 weeks until the rash mostly subsided. I was on prednisone, and meds for the itching and took frequent tepid water oatmeal baths. It was really quite miserable. But after the 2 weeks, I was restarted on 75% dosage and did not have a recurrence of rash on that level again. So, just because there is a severe reaction to start does not NECESSARILY mean he will be unable to take it at all. by the way.. at the 75% dosage I had a complete response at my 8 wk scans.

                                    Tina

                                  joycedixon
                                  Participant

                                    Zelboraf has side effects.I would not stop .

                                    I have had skin problems and see my dermatologist every 6 weeks.

                                    He mentioned that it seemed that people who had skin problems  responded well.

                                    THis was just a comment but worth thinking about.

                                    I had joint problems the first two months that really limited me.

                                    I walk carefully –steps-threshholds–in and out of cars so I do not strain my knees

                                    no problem walking flat ground

                                    First PET after 5 months lesions on liver and lung were gone.

                                    I am losing hair and it suddenly turned fuzzy recently.However,with the success

                                    and future success I pray–I  will stay on the zelboraf.I still take 4 two times per day

                                    There are side effects but prayers that they are worth it.Read other peoples' notes

                                    on their experiences.

                                    joycedixon
                                    Participant

                                      Zelboraf has side effects.I would not stop .

                                      I have had skin problems and see my dermatologist every 6 weeks.

                                      He mentioned that it seemed that people who had skin problems  responded well.

                                      THis was just a comment but worth thinking about.

                                      I had joint problems the first two months that really limited me.

                                      I walk carefully –steps-threshholds–in and out of cars so I do not strain my knees

                                      no problem walking flat ground

                                      First PET after 5 months lesions on liver and lung were gone.

                                      I am losing hair and it suddenly turned fuzzy recently.However,with the success

                                      and future success I pray–I  will stay on the zelboraf.I still take 4 two times per day

                                      There are side effects but prayers that they are worth it.Read other peoples' notes

                                      on their experiences.

                                      POW
                                      Participant

                                        Yes, many people have side effects with Zelboraf, especially in the first 2 or 3 months. Janner's idea of calling the Zelboraf for immediate advice is good. Switching to an oncologist who has a lot of experience with melanoma, including Zelboraf and Yervoy (ipi) is even better. Most melanoma treatments these days can have some very unpleasant, even dangerous, side effects. If your brother switches from Zelboraf to Yervoy, for example, Yervoy has its own consellation of side effects and remedies. So an experienced oncologist is important.

                                        Many people who have a bad reaction to Zelboraf go off it for a week or two and then start back on it at a lower dose. Sometimes they are able to gradually increase the dose while keeping the side effects manageable. Sometimes anti-inflammatory drugs can keep the side effects to a minimum, especially skin rashes and itching. Different people respond in different ways. 

                                        Don't give up on Zelboraf yet, but do get more expert opinions.

                                          carpediemtr
                                          Participant
                                            • Thank you for all your helpful advises. They are really worthy for us.

                                               

                                              But, my oncologist couldn't give me satisfactory information regarding side effects. Thus, we are searching a literate oncologist and dermatologist according to your advises. But in order to prevent hitch regarding treatment and to manage side effects in this period, we need to be informed about the methodology you followed.

                                               

                                               
                                              To manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                                            POW
                                            Participant

                                              If you tell us where your brother lives, maybe someone here can recommend a good melanoma specialist in his area. Meanwhile, you can search this forum for the terms Zelboraf and "side effects" (in quotes) and see various discussions about it.

                                              carpediemtr
                                              Participant

                                                Tahnk you POW. We live in Europe, Turkey. There are some Melanoma Specialists here, maybe we will switch our oncologist acccording to this.

                                                POW
                                                Participant

                                                  Since you live in Turkey, you might want to post your question on the Melanoma International Foundation web site ( http://forum.melanomainternational.org/mif/ ). The MIF is another excellent resource for you and they have many international members, including some from Turkey.  I hope your brother feels better soon!

                                                  carpediemtr
                                                  Participant

                                                    Thank you very much POW. I will check MIF soon. Also may your brother rest in peace.

                                                    mbaelaporte
                                                    Participant

                                                      speaking as another who received Zelboraf in trial before approval: my doctor also expressed appreciation for reactions / showed it was working.

                                                      As previous recipient described I also had a manifestation of skin lesions and was a regular visitor for liquid nitrogen and self administered Efudex.

                                                      I had rather "remarkable" tumor presence and within a week had remarkable response: At about the eight week mark my doctor referred to me as Mr. Remission –  about 8 months after starting trial tumors began their resurgence.

                                                      As others have stated there is a mountain of information re: side effects all colored in gray.  From my anecdotal platform a reduction in dosage & continuation might work – a compromise of internal organs would signal stopping or pause.

                                                      The biggest caution or advice I can give to a Zelboraf user is stay out of the sun – I could get burned from the reflection off a car bumper

                                                      Wish you well in Turkey,  john

                                                      mbaelaporte
                                                      Participant

                                                        speaking as another who received Zelboraf in trial before approval: my doctor also expressed appreciation for reactions / showed it was working.

                                                        As previous recipient described I also had a manifestation of skin lesions and was a regular visitor for liquid nitrogen and self administered Efudex.

                                                        I had rather "remarkable" tumor presence and within a week had remarkable response: At about the eight week mark my doctor referred to me as Mr. Remission –  about 8 months after starting trial tumors began their resurgence.

                                                        As others have stated there is a mountain of information re: side effects all colored in gray.  From my anecdotal platform a reduction in dosage & continuation might work – a compromise of internal organs would signal stopping or pause.

                                                        The biggest caution or advice I can give to a Zelboraf user is stay out of the sun – I could get burned from the reflection off a car bumper

                                                        Wish you well in Turkey,  john

                                                        mbaelaporte
                                                        Participant

                                                          speaking as another who received Zelboraf in trial before approval: my doctor also expressed appreciation for reactions / showed it was working.

                                                          As previous recipient described I also had a manifestation of skin lesions and was a regular visitor for liquid nitrogen and self administered Efudex.

                                                          I had rather "remarkable" tumor presence and within a week had remarkable response: At about the eight week mark my doctor referred to me as Mr. Remission –  about 8 months after starting trial tumors began their resurgence.

                                                          As others have stated there is a mountain of information re: side effects all colored in gray.  From my anecdotal platform a reduction in dosage & continuation might work – a compromise of internal organs would signal stopping or pause.

                                                          The biggest caution or advice I can give to a Zelboraf user is stay out of the sun – I could get burned from the reflection off a car bumper

                                                          Wish you well in Turkey,  john

                                                          matthawes
                                                          Participant

                                                            during taking zelboraf for a period of 11 months I had the same side effects and maybe more than them. after first 2 weeks of treatment I got rash all over my body with severe nausea. then  I was taken off it for 10 days until the rash mostly subsided. then I started to take medicine again.

                                                            during my treatment I usually felt severe tiredness with joint pains and never went out under daylight. however sometimes I had had skin reactions again, but never took off zelboraf. furthermore my oncologist told me that there is a correlation between the effectiveness of zelboraf and side effects. that's exactly right, cos I saw the results.

                                                            now I completed my treatment with success. I cannot believe it yet, but its real, I successed to get over from melanoma.

                                                            pls be in contact with your oncologist and ask your dermatologists advice for the side effects. then continue to take medicine.

                                                            kingwolfie
                                                            Participant

                                                              my husband has been on zeloboraf for 2 months straight, the first time he was on it for 2 1/2 weeks developed a severe skin reaction taken off for 2 weeks and restarted once rash resolved, he had a PET scan last week showing great improvement but is feeling very sick, n/v, very tired, like he has the flu, he is on pepcid, protontix for stomach problems which they believe is due to pain meds

                                                              kingwolfie
                                                              Participant

                                                                my husband has been on zeloboraf for 2 months straight, the first time he was on it for 2 1/2 weeks developed a severe skin reaction taken off for 2 weeks and restarted once rash resolved, he had a PET scan last week showing great improvement but is feeling very sick, n/v, very tired, like he has the flu, he is on pepcid, protontix for stomach problems which they believe is due to pain meds

                                                                kingwolfie
                                                                Participant

                                                                  my husband has been on zeloboraf for 2 months straight, the first time he was on it for 2 1/2 weeks developed a severe skin reaction taken off for 2 weeks and restarted once rash resolved, he had a PET scan last week showing great improvement but is feeling very sick, n/v, very tired, like he has the flu, he is on pepcid, protontix for stomach problems which they believe is due to pain meds

                                                                  matthawes
                                                                  Participant

                                                                    during taking zelboraf for a period of 11 months I had the same side effects and maybe more than them. after first 2 weeks of treatment I got rash all over my body with severe nausea. then  I was taken off it for 10 days until the rash mostly subsided. then I started to take medicine again.

                                                                    during my treatment I usually felt severe tiredness with joint pains and never went out under daylight. however sometimes I had had skin reactions again, but never took off zelboraf. furthermore my oncologist told me that there is a correlation between the effectiveness of zelboraf and side effects. that's exactly right, cos I saw the results.

                                                                    now I completed my treatment with success. I cannot believe it yet, but its real, I successed to get over from melanoma.

                                                                    pls be in contact with your oncologist and ask your dermatologists advice for the side effects. then continue to take medicine.

                                                                    matthawes
                                                                    Participant

                                                                      during taking zelboraf for a period of 11 months I had the same side effects and maybe more than them. after first 2 weeks of treatment I got rash all over my body with severe nausea. then  I was taken off it for 10 days until the rash mostly subsided. then I started to take medicine again.

                                                                      during my treatment I usually felt severe tiredness with joint pains and never went out under daylight. however sometimes I had had skin reactions again, but never took off zelboraf. furthermore my oncologist told me that there is a correlation between the effectiveness of zelboraf and side effects. that's exactly right, cos I saw the results.

                                                                      now I completed my treatment with success. I cannot believe it yet, but its real, I successed to get over from melanoma.

                                                                      pls be in contact with your oncologist and ask your dermatologists advice for the side effects. then continue to take medicine.

                                                                      carpediemtr
                                                                      Participant

                                                                        Thank you very much POW. I will check MIF soon. Also may your brother rest in peace.

                                                                        carpediemtr
                                                                        Participant

                                                                          Thank you very much POW. I will check MIF soon. Also may your brother rest in peace.

                                                                          POW
                                                                          Participant

                                                                            Since you live in Turkey, you might want to post your question on the Melanoma International Foundation web site ( http://forum.melanomainternational.org/mif/ ). The MIF is another excellent resource for you and they have many international members, including some from Turkey.  I hope your brother feels better soon!

                                                                            POW
                                                                            Participant

                                                                              Since you live in Turkey, you might want to post your question on the Melanoma International Foundation web site ( http://forum.melanomainternational.org/mif/ ). The MIF is another excellent resource for you and they have many international members, including some from Turkey.  I hope your brother feels better soon!

                                                                              carpediemtr
                                                                              Participant

                                                                                Tahnk you POW. We live in Europe, Turkey. There are some Melanoma Specialists here, maybe we will switch our oncologist acccording to this.

                                                                                carpediemtr
                                                                                Participant

                                                                                  Tahnk you POW. We live in Europe, Turkey. There are some Melanoma Specialists here, maybe we will switch our oncologist acccording to this.

                                                                                  POW
                                                                                  Participant

                                                                                    If you tell us where your brother lives, maybe someone here can recommend a good melanoma specialist in his area. Meanwhile, you can search this forum for the terms Zelboraf and "side effects" (in quotes) and see various discussions about it.

                                                                                    POW
                                                                                    Participant

                                                                                      If you tell us where your brother lives, maybe someone here can recommend a good melanoma specialist in his area. Meanwhile, you can search this forum for the terms Zelboraf and "side effects" (in quotes) and see various discussions about it.

                                                                                      carpediemtr
                                                                                      Participant
                                                                                        • Thank you for all your helpful advises. They are really worthy for us.

                                                                                           

                                                                                          But, my oncologist couldn't give me satisfactory information regarding side effects. Thus, we are searching a literate oncologist and dermatologist according to your advises. But in order to prevent hitch regarding treatment and to manage side effects in this period, we need to be informed about the methodology you followed.

                                                                                           

                                                                                           
                                                                                          To manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                                                                                        carpediemtr
                                                                                        Participant
                                                                                          • Thank you for all your helpful advises. They are really worthy for us.

                                                                                             

                                                                                            But, my oncologist couldn't give me satisfactory information regarding side effects. Thus, we are searching a literate oncologist and dermatologist according to your advises. But in order to prevent hitch regarding treatment and to manage side effects in this period, we need to be informed about the methodology you followed.

                                                                                             

                                                                                             
                                                                                            To manage these side effects, what kind of medical dermatologic treatment did you have with Zelboraf? Or any herbal treatment did you take? My brother is just taking Avil and dekort (IV/ IM) and antihistaminic pomad.

                                                                                        POW
                                                                                        Participant

                                                                                          Yes, many people have side effects with Zelboraf, especially in the first 2 or 3 months. Janner's idea of calling the Zelboraf for immediate advice is good. Switching to an oncologist who has a lot of experience with melanoma, including Zelboraf and Yervoy (ipi) is even better. Most melanoma treatments these days can have some very unpleasant, even dangerous, side effects. If your brother switches from Zelboraf to Yervoy, for example, Yervoy has its own consellation of side effects and remedies. So an experienced oncologist is important.

                                                                                          Many people who have a bad reaction to Zelboraf go off it for a week or two and then start back on it at a lower dose. Sometimes they are able to gradually increase the dose while keeping the side effects manageable. Sometimes anti-inflammatory drugs can keep the side effects to a minimum, especially skin rashes and itching. Different people respond in different ways. 

                                                                                          Don't give up on Zelboraf yet, but do get more expert opinions.

                                                                                          POW
                                                                                          Participant

                                                                                            Yes, many people have side effects with Zelboraf, especially in the first 2 or 3 months. Janner's idea of calling the Zelboraf for immediate advice is good. Switching to an oncologist who has a lot of experience with melanoma, including Zelboraf and Yervoy (ipi) is even better. Most melanoma treatments these days can have some very unpleasant, even dangerous, side effects. If your brother switches from Zelboraf to Yervoy, for example, Yervoy has its own consellation of side effects and remedies. So an experienced oncologist is important.

                                                                                            Many people who have a bad reaction to Zelboraf go off it for a week or two and then start back on it at a lower dose. Sometimes they are able to gradually increase the dose while keeping the side effects manageable. Sometimes anti-inflammatory drugs can keep the side effects to a minimum, especially skin rashes and itching. Different people respond in different ways. 

                                                                                            Don't give up on Zelboraf yet, but do get more expert opinions.

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