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Joint Pain on Zelboraf

Forums General Melanoma Community Joint Pain on Zelboraf

  • Post
    s Mom
    Participant

      My son has been on Zelboraf for about a month and has been doing great.  However, he has recently experienced some severe joint pain.  He's pretty sore and has been having a hard time walking and moving around.  Has anyone on Zelboraf experienced anything similar?  He does say once he's up and moving, it seems to lessen a little – but he's still pretty sore and achy.  Will this side effect fade anytime soon?

      My son has been on Zelboraf for about a month and has been doing great.  However, he has recently experienced some severe joint pain.  He's pretty sore and has been having a hard time walking and moving around.  Has anyone on Zelboraf experienced anything similar?  He does say once he's up and moving, it seems to lessen a little – but he's still pretty sore and achy.  Will this side effect fade anytime soon?  I thought I  read somewhere (on this board, maybe??) that this particular side effect tends to go away after you've been on the medicine for awhile.  Is that right?  Any advice on over the counter medicine or old-fashioned remedies would be appreciated (he won't take anything that is filtered through the liver).  Thanks in advance…

      On another note, I am just so sad about Boots – breaks my heart.  She was so helpful and such a fighter.  I HATE HATE HATE this disease. 

      Bridgette (Jeff's Mom)

    Viewing 17 reply threads
    • Replies
        killmel
        Participant

          Hi Bridgette,

           

          I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.

           I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.

          Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.

          Best Wishes

          Marie

          killmel
          Participant

            Hi Bridgette,

             

            I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.

             I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.

            Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.

            Best Wishes

            Marie

            killmel
            Participant

              Hi Bridgette,

               

              I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.

               I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.

              Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.

              Best Wishes

              Marie

                s Mom
                Participant

                  Hi Marie,

                  Call Amanda Ranieri at PALS Services.  She really was wonderful.  You have to show need and that you cannot afford to fly commercially.  There are a bunch of forms to fill out and your doctor has to sign a release form.  Here's the information:

                   

                  Amanda Ranieri at PALS Services – Patient Airlift Services

                  Her direct phone #  516.300.1660 ext. 104

                  Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber.  I am surprised and so saddened by the news of her passing.  

                  Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails.  We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.

                  Take care and God Bless!

                   

                  Bridgette (Jeff's MOM)

                   

                   

                   

                   

                   
                  s Mom
                  Participant

                    Hi Marie,

                    Call Amanda Ranieri at PALS Services.  She really was wonderful.  You have to show need and that you cannot afford to fly commercially.  There are a bunch of forms to fill out and your doctor has to sign a release form.  Here's the information:

                     

                    Amanda Ranieri at PALS Services – Patient Airlift Services

                    Her direct phone #  516.300.1660 ext. 104

                    Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber.  I am surprised and so saddened by the news of her passing.  

                    Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails.  We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.

                    Take care and God Bless!

                     

                    Bridgette (Jeff's MOM)

                     

                     

                     

                     

                     
                    killmel
                    Participant

                      Hi Bridgette,

                      Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.

                      Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.

                      I am so  happy to hear that Dr. W. will help you…what is his recommendation???

                      Thank you for help & replying to my post.

                      Marie

                      s Mom
                      Participant

                        Hi Marie,

                        PALS sent vouchers from Southwest.  I guess Southwest doesn't fly to LA??  

                        We haven't secured flights to LA yet – we may end up paying for this out of pocket.  Jeff is heading out on May 14th.

                        Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash).   He said that he would reassess depending on what new trials are out there, if necessary.  He was very reassuring and Jeff really liked him.  Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.

                        Sorry about the flight info…I know that doesn't help you.  Take care.

                        Bridgette (Jeff's Mom)

                        s Mom
                        Participant

                          Hi Marie,

                          PALS sent vouchers from Southwest.  I guess Southwest doesn't fly to LA??  

                          We haven't secured flights to LA yet – we may end up paying for this out of pocket.  Jeff is heading out on May 14th.

                          Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash).   He said that he would reassess depending on what new trials are out there, if necessary.  He was very reassuring and Jeff really liked him.  Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.

                          Sorry about the flight info…I know that doesn't help you.  Take care.

                          Bridgette (Jeff's Mom)

                          s Mom
                          Participant

                            Hi Marie,

                            PALS sent vouchers from Southwest.  I guess Southwest doesn't fly to LA??  

                            We haven't secured flights to LA yet – we may end up paying for this out of pocket.  Jeff is heading out on May 14th.

                            Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash).   He said that he would reassess depending on what new trials are out there, if necessary.  He was very reassuring and Jeff really liked him.  Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.

                            Sorry about the flight info…I know that doesn't help you.  Take care.

                            Bridgette (Jeff's Mom)

                            killmel
                            Participant

                              Hi Bridgette,

                              Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.

                              Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.

                              I am so  happy to hear that Dr. W. will help you…what is his recommendation???

                              Thank you for help & replying to my post.

                              Marie

                              killmel
                              Participant

                                Hi Bridgette,

                                Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.

                                Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.

                                I am so  happy to hear that Dr. W. will help you…what is his recommendation???

                                Thank you for help & replying to my post.

                                Marie

                                s Mom
                                Participant

                                  Hi Marie,

                                  Call Amanda Ranieri at PALS Services.  She really was wonderful.  You have to show need and that you cannot afford to fly commercially.  There are a bunch of forms to fill out and your doctor has to sign a release form.  Here's the information:

                                   

                                  Amanda Ranieri at PALS Services – Patient Airlift Services

                                  Her direct phone #  516.300.1660 ext. 104

                                  Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber.  I am surprised and so saddened by the news of her passing.  

                                  Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails.  We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.

                                  Take care and God Bless!

                                   

                                  Bridgette (Jeff's MOM)

                                   

                                   

                                   

                                   

                                   
                                jmmm
                                Participant
                                  My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative.
                                  jmmm
                                  Participant
                                    My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative.
                                    jmmm
                                    Participant
                                      My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative.
                                      deardad
                                      Participant

                                        Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.

                                        I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.

                                        Stay strong and remain positive..

                                        Take care

                                        Nahmi from Melbourne

                                        deardad
                                        Participant

                                          Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.

                                          I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.

                                          Stay strong and remain positive..

                                          Take care

                                          Nahmi from Melbourne

                                          deardad
                                          Participant

                                            Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.

                                            I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.

                                            Stay strong and remain positive..

                                            Take care

                                            Nahmi from Melbourne

                                            hopefortomorrow
                                            Participant

                                              Hi Bridgette,

                                              My mom had the same side effect on Zelboraf.  Her joint pain was so extreme, she couldn't even stand to be touched.  She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain.  At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously.  What a change in her attitude and activity level.  He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma.  Of course, every patient is different, but it might be worth bringing it up at his next visit.  Hope that helps a little.  I know what you are feeling watching someone you love dearly suffer through this disease.  My thoughts and prayers are with you.

                                              hopefortomorrow
                                              Participant

                                                Hi Bridgette,

                                                My mom had the same side effect on Zelboraf.  Her joint pain was so extreme, she couldn't even stand to be touched.  She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain.  At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously.  What a change in her attitude and activity level.  He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma.  Of course, every patient is different, but it might be worth bringing it up at his next visit.  Hope that helps a little.  I know what you are feeling watching someone you love dearly suffer through this disease.  My thoughts and prayers are with you.

                                                hopefortomorrow
                                                Participant

                                                  Hi Bridgette,

                                                  My mom had the same side effect on Zelboraf.  Her joint pain was so extreme, she couldn't even stand to be touched.  She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain.  At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously.  What a change in her attitude and activity level.  He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma.  Of course, every patient is different, but it might be worth bringing it up at his next visit.  Hope that helps a little.  I know what you are feeling watching someone you love dearly suffer through this disease.  My thoughts and prayers are with you.

                                                  Linny
                                                  Participant

                                                    The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.

                                                    http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm

                                                    Linny
                                                    Participant

                                                      The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.

                                                      http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm

                                                      Linny
                                                      Participant

                                                        The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.

                                                        http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm

                                                        frosbac
                                                        Participant

                                                          Hi 

                                                          My name is Tim and I have been dealing with melanoma for the last 20 years.

                                                          The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo

                                                          I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects

                                                          Best wishes

                                                          Tim

                                                          frosbac
                                                          Participant

                                                            Hi 

                                                            My name is Tim and I have been dealing with melanoma for the last 20 years.

                                                            The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo

                                                            I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects

                                                            Best wishes

                                                            Tim

                                                            frosbac
                                                            Participant

                                                              Hi 

                                                              My name is Tim and I have been dealing with melanoma for the last 20 years.

                                                              The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo

                                                              I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects

                                                              Best wishes

                                                              Tim

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