zelobraf

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  • Post
    bikerwife
    Participant
      Lynn started taking his pills Monday not sure what to expect hoping for the best. I do know thems some big pills. Lynn is trying to stay out of the sun and I did go buy him a uv shirt to ride in not that we get to ride a lot but hoping he gets to feeling better soon.

      He’s lost so much weight really hoping he can gain some of it back.

      Lynn has a lot of little tumors on his body a lot of them disappeared after ippi. Will zelobraf make them disappear.

      Anyone that can give me some ideas of what to expect or things I can do to help him. It would be greatly appreciated. As allways love and pray s for you and your families.

      Thanks Belva

    Viewing 14 reply threads
    • Replies
        LynnLuc
        Participant

          here is a webpage showing an example of how it does its job http://emandmichael.wordpress.com/tag/braf/

          LynnLuc
          Participant

            here is a webpage showing an example of how it does its job http://emandmichael.wordpress.com/tag/braf/

            LynnLuc
            Participant

              here is a webpage showing an example of how it does its job http://emandmichael.wordpress.com/tag/braf/

              Richard_K
              Participant

                 

                Belva

                There are a number of people, myself included, who have posted about the swiftness with which Zelboraf works in reducing tumors.  A number of people have also had them disappear.  I had two large ones in my lungs that have shrunk significantly and my doctor thinks what shows up on CT scans now are either dead cells or scar tissue.  Good luck to you both.

                Dick

                Richard_K
                Participant

                   

                  Belva

                  There are a number of people, myself included, who have posted about the swiftness with which Zelboraf works in reducing tumors.  A number of people have also had them disappear.  I had two large ones in my lungs that have shrunk significantly and my doctor thinks what shows up on CT scans now are either dead cells or scar tissue.  Good luck to you both.

                  Dick

                  Richard_K
                  Participant

                     

                    Belva

                    There are a number of people, myself included, who have posted about the swiftness with which Zelboraf works in reducing tumors.  A number of people have also had them disappear.  I had two large ones in my lungs that have shrunk significantly and my doctor thinks what shows up on CT scans now are either dead cells or scar tissue.  Good luck to you both.

                    Dick

                      Laurie from maine
                      Participant

                        Hi,

                        I think you will be surprised at how fast things disappear, it is truly amazing.  I know for me I felt so great so quickly it was truly amazing, my breathing had been really labored and that quickly went away. 

                        BUT the big but was the sun, please tell him be very careful especially in beginning, you dont think you are getting burnt but boy if you do it can be  blister so def watch the 10-2 time and protect himself.  I also developed a rash in beginning slight one but nurses had me put aloe on it which was not what others did, but it soothed the itchiness and it rash went away on its own, aloe just helped soothe it and bad sunburn I got (see I speak from experience ha)

                        I hope that he finds his appetite is coming back and takes the opportunity to bulk up.

                        Keep us posted,

                        laurie from maine

                        Laurie from maine
                        Participant

                          Hi,

                          I think you will be surprised at how fast things disappear, it is truly amazing.  I know for me I felt so great so quickly it was truly amazing, my breathing had been really labored and that quickly went away. 

                          BUT the big but was the sun, please tell him be very careful especially in beginning, you dont think you are getting burnt but boy if you do it can be  blister so def watch the 10-2 time and protect himself.  I also developed a rash in beginning slight one but nurses had me put aloe on it which was not what others did, but it soothed the itchiness and it rash went away on its own, aloe just helped soothe it and bad sunburn I got (see I speak from experience ha)

                          I hope that he finds his appetite is coming back and takes the opportunity to bulk up.

                          Keep us posted,

                          laurie from maine

                          Laurie from maine
                          Participant

                            Hi,

                            I think you will be surprised at how fast things disappear, it is truly amazing.  I know for me I felt so great so quickly it was truly amazing, my breathing had been really labored and that quickly went away. 

                            BUT the big but was the sun, please tell him be very careful especially in beginning, you dont think you are getting burnt but boy if you do it can be  blister so def watch the 10-2 time and protect himself.  I also developed a rash in beginning slight one but nurses had me put aloe on it which was not what others did, but it soothed the itchiness and it rash went away on its own, aloe just helped soothe it and bad sunburn I got (see I speak from experience ha)

                            I hope that he finds his appetite is coming back and takes the opportunity to bulk up.

                            Keep us posted,

                            laurie from maine

                          Erinmay22
                          Participant

                            Belva – I started Zelbora May 30th.  Had to take a week break due to a horrible rash.  (see my blog – I've been trying to document side effects / pains / etc – http://www.melanomaandthecity.blogspot.com/ )

                            I would say that watch the rash.  If you start to notice lots of little bumps let your doctor know.  I waited and thinking I'll see how it looks tomorrow and when I woke up it was horrible around my neck and I watched it just spreading.  I started back on Z June 15th at a reduced dose (3 pills 2x's per day).  So far no rash.  I am starting to get warts maybe?  and the joint pain was awful last week but this week seems to be ok!  

                            Like I said I'm still new to it. I honestly don't have any tumors I can see so hard to know if it's working.  Although my spot was in my small intestine and I was having pretty bad stomach cramps before starting on Z and they are gone – so I'm hoping that's a good sign.  Will get my first scans in a few weeks.

                            Thoughts and prayers with you.  Should you need anything don't hesitate to ask!  
                            Erin

                            Erinmay22
                            Participant

                              Belva – I started Zelbora May 30th.  Had to take a week break due to a horrible rash.  (see my blog – I've been trying to document side effects / pains / etc – http://www.melanomaandthecity.blogspot.com/ )

                              I would say that watch the rash.  If you start to notice lots of little bumps let your doctor know.  I waited and thinking I'll see how it looks tomorrow and when I woke up it was horrible around my neck and I watched it just spreading.  I started back on Z June 15th at a reduced dose (3 pills 2x's per day).  So far no rash.  I am starting to get warts maybe?  and the joint pain was awful last week but this week seems to be ok!  

                              Like I said I'm still new to it. I honestly don't have any tumors I can see so hard to know if it's working.  Although my spot was in my small intestine and I was having pretty bad stomach cramps before starting on Z and they are gone – so I'm hoping that's a good sign.  Will get my first scans in a few weeks.

                              Thoughts and prayers with you.  Should you need anything don't hesitate to ask!  
                              Erin

                              Erinmay22
                              Participant

                                Belva – I started Zelbora May 30th.  Had to take a week break due to a horrible rash.  (see my blog – I've been trying to document side effects / pains / etc – http://www.melanomaandthecity.blogspot.com/ )

                                I would say that watch the rash.  If you start to notice lots of little bumps let your doctor know.  I waited and thinking I'll see how it looks tomorrow and when I woke up it was horrible around my neck and I watched it just spreading.  I started back on Z June 15th at a reduced dose (3 pills 2x's per day).  So far no rash.  I am starting to get warts maybe?  and the joint pain was awful last week but this week seems to be ok!  

                                Like I said I'm still new to it. I honestly don't have any tumors I can see so hard to know if it's working.  Although my spot was in my small intestine and I was having pretty bad stomach cramps before starting on Z and they are gone – so I'm hoping that's a good sign.  Will get my first scans in a few weeks.

                                Thoughts and prayers with you.  Should you need anything don't hesitate to ask!  
                                Erin

                                Tina D
                                Participant

                                  I also had to take a break from it after 1 week due to a severe spreading rash, back on a reduced dosage with no significant rash since. My tumors are also not visible, still will not know for a month how well it is working, but there are a GREAT number of people on here who can attest to the swiftness of respnse! I also just want to stress the importance of being ever so careful in the sun. I was never prone to sunburn, but now I can fry in just a matter of minutes. Also, various little skin growths are possible, and you need to have him make regular ( monthly in the beginning) visits to the dermatologist. I had 3 places removed last week, and one turned out to be squamous cell carcinoma — not a big deal, but just be aware of this. Reading on here you can find many encouraging stories and helpful advice and lots of support.  I have found the side effects to be very tolerable over-all.

                                  Tina D
                                  Participant

                                    I also had to take a break from it after 1 week due to a severe spreading rash, back on a reduced dosage with no significant rash since. My tumors are also not visible, still will not know for a month how well it is working, but there are a GREAT number of people on here who can attest to the swiftness of respnse! I also just want to stress the importance of being ever so careful in the sun. I was never prone to sunburn, but now I can fry in just a matter of minutes. Also, various little skin growths are possible, and you need to have him make regular ( monthly in the beginning) visits to the dermatologist. I had 3 places removed last week, and one turned out to be squamous cell carcinoma — not a big deal, but just be aware of this. Reading on here you can find many encouraging stories and helpful advice and lots of support.  I have found the side effects to be very tolerable over-all.

                                    Tina D
                                    Participant

                                      I also had to take a break from it after 1 week due to a severe spreading rash, back on a reduced dosage with no significant rash since. My tumors are also not visible, still will not know for a month how well it is working, but there are a GREAT number of people on here who can attest to the swiftness of respnse! I also just want to stress the importance of being ever so careful in the sun. I was never prone to sunburn, but now I can fry in just a matter of minutes. Also, various little skin growths are possible, and you need to have him make regular ( monthly in the beginning) visits to the dermatologist. I had 3 places removed last week, and one turned out to be squamous cell carcinoma — not a big deal, but just be aware of this. Reading on here you can find many encouraging stories and helpful advice and lots of support.  I have found the side effects to be very tolerable over-all.

                                      H555
                                      Participant

                                        Belva like the others I've had some side effects. I've been on Z since APril 8th. My situation was much like Dick's. I had clean scans last October but in Feb/March developed a nasty cough that just kept getting worse. Xray showed numerous masses and nodules in both lungs with one large one partially blocking an airway. I could not take in enough air to blow my nose. I started Zelboraf as I said on APril 8. at the end of the first week had a massive itchy rash, onc dr cut me back to half doses, 2 pills am and 2 pm and in the last month i've gone up to 3&3. my response was noted in the radiologists report of a CT scan of my lungs and abdomen in early June as "remarkable" – almost all the nodules and masses were gone and the largest one shrunk from 3.7cm to just over 1.5 cm.  sun sensitivity is a challenge, I'm an outdoor person and i've become better at using sunb block. my appetite comes and goes and I take promethazine for mild nausea that seems to help with appetite. this drug is amazing. I keep my fingers crossed that i'll get a couple of years (i'm a 62 year old grandpa). Best of luck to you.

                                        H555
                                        Participant

                                          Belva like the others I've had some side effects. I've been on Z since APril 8th. My situation was much like Dick's. I had clean scans last October but in Feb/March developed a nasty cough that just kept getting worse. Xray showed numerous masses and nodules in both lungs with one large one partially blocking an airway. I could not take in enough air to blow my nose. I started Zelboraf as I said on APril 8. at the end of the first week had a massive itchy rash, onc dr cut me back to half doses, 2 pills am and 2 pm and in the last month i've gone up to 3&3. my response was noted in the radiologists report of a CT scan of my lungs and abdomen in early June as "remarkable" – almost all the nodules and masses were gone and the largest one shrunk from 3.7cm to just over 1.5 cm.  sun sensitivity is a challenge, I'm an outdoor person and i've become better at using sunb block. my appetite comes and goes and I take promethazine for mild nausea that seems to help with appetite. this drug is amazing. I keep my fingers crossed that i'll get a couple of years (i'm a 62 year old grandpa). Best of luck to you.

                                          H555
                                          Participant

                                            Belva like the others I've had some side effects. I've been on Z since APril 8th. My situation was much like Dick's. I had clean scans last October but in Feb/March developed a nasty cough that just kept getting worse. Xray showed numerous masses and nodules in both lungs with one large one partially blocking an airway. I could not take in enough air to blow my nose. I started Zelboraf as I said on APril 8. at the end of the first week had a massive itchy rash, onc dr cut me back to half doses, 2 pills am and 2 pm and in the last month i've gone up to 3&3. my response was noted in the radiologists report of a CT scan of my lungs and abdomen in early June as "remarkable" – almost all the nodules and masses were gone and the largest one shrunk from 3.7cm to just over 1.5 cm.  sun sensitivity is a challenge, I'm an outdoor person and i've become better at using sunb block. my appetite comes and goes and I take promethazine for mild nausea that seems to help with appetite. this drug is amazing. I keep my fingers crossed that i'll get a couple of years (i'm a 62 year old grandpa). Best of luck to you.

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