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pbnjelley

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      pbnjelley
      Participant

        Thank you for all the congratulatory responses!  It is my hope that a positive story will inspore some hope and I pray that more happy outcomes start appearing.  I also want those who are on Zelboraf to know that it can be effective and I think the more it's in use the better the numbers are going to get as more information becomes available on it. I know how frustrating all the side effects are, but have faith that it is doing its duty!  For all of you who cannot take the Zelboraf, I pray for you and the hope that your treatment is just as effective.  If anyone needs an extra prayer angel, let me know because I will gladly add you to my list.  Thank you again and God Bless!

        pbnjelley
        Participant

          Thank you for all the congratulatory responses!  It is my hope that a positive story will inspore some hope and I pray that more happy outcomes start appearing.  I also want those who are on Zelboraf to know that it can be effective and I think the more it's in use the better the numbers are going to get as more information becomes available on it. I know how frustrating all the side effects are, but have faith that it is doing its duty!  For all of you who cannot take the Zelboraf, I pray for you and the hope that your treatment is just as effective.  If anyone needs an extra prayer angel, let me know because I will gladly add you to my list.  Thank you again and God Bless!

          pbnjelley
          Participant

            Thank you for all the congratulatory responses!  It is my hope that a positive story will inspore some hope and I pray that more happy outcomes start appearing.  I also want those who are on Zelboraf to know that it can be effective and I think the more it's in use the better the numbers are going to get as more information becomes available on it. I know how frustrating all the side effects are, but have faith that it is doing its duty!  For all of you who cannot take the Zelboraf, I pray for you and the hope that your treatment is just as effective.  If anyone needs an extra prayer angel, let me know because I will gladly add you to my list.  Thank you again and God Bless!

            pbnjelley
            Participant

              I'm also taking Zelboraf.  I've been on (and off) of it for 2 months now.  It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash.  I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme.  Finally, it was too much and I went in.  My oncologist took me off Zelboraf for about a week and I took a steroid.  Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on.    Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again.  Now I am on 2 pills twice a day and I am doing substantially better.  I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective.  I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain.  Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day).  I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage.  And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt.  My thoughts and prayers go out to you and your husband and I hope you find what works for him. 

              pbnjelley
              Participant

                I'm also taking Zelboraf.  I've been on (and off) of it for 2 months now.  It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash.  I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme.  Finally, it was too much and I went in.  My oncologist took me off Zelboraf for about a week and I took a steroid.  Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on.    Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again.  Now I am on 2 pills twice a day and I am doing substantially better.  I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective.  I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain.  Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day).  I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage.  And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt.  My thoughts and prayers go out to you and your husband and I hope you find what works for him. 

                pbnjelley
                Participant

                  I'm also taking Zelboraf.  I've been on (and off) of it for 2 months now.  It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash.  I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme.  Finally, it was too much and I went in.  My oncologist took me off Zelboraf for about a week and I took a steroid.  Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on.    Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again.  Now I am on 2 pills twice a day and I am doing substantially better.  I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective.  I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain.  Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day).  I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage.  And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt.  My thoughts and prayers go out to you and your husband and I hope you find what works for him. 

                    pbnjelley
                    Participant

                      Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting.  I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.

                      pbnjelley
                      Participant

                        Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting.  I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.

                        pbnjelley
                        Participant

                          Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting.  I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.

                        pbnjelley
                        Participant

                          Thank you for the responses!  I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig.  My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone.  Again, thank you for taking the time to respond and I wish you all well!

                          pbnjelley
                          Participant

                            Thank you for the responses!  I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig.  My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone.  Again, thank you for taking the time to respond and I wish you all well!

                            pbnjelley
                            Participant

                              Thank you for the responses!  I think I've covered the emotions that come with losing hair and just needed the confirmation of what others have been through before investing in the wig.  My oncologist wasn't sure what to tell me becuase I am the only person he has seen take this drug so this is all pretty brand new to everyone.  Again, thank you for taking the time to respond and I wish you all well!

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