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Zelboraf and rambling…
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Zelboraf and rambling…

› Forums › General Melanoma Community › Zelboraf and rambling…

  • Post
    • October 16, 2012 at 3:53 am
    Souxie_q
    Participant
      I just want to thank y’all for posting about your experiences with Zelboraf. My sisters story starts with a melanoma mole removed when she was 18. At age 39 she was diagnosed with metastatic melanoma, stage 3. At the time she lived in Houston and was able to go to MD Anderson for the start of her interferon treatment. But has since moved to PA. She, after complaining of stomach pain, was diagnosed with gastritis in August 2012. She lost 13 pounds in a month and lived with this pain.

      I just want to thank y’all for posting about your experiences with Zelboraf. My sisters story starts with a melanoma mole removed when she was 18. At age 39 she was diagnosed with metastatic melanoma, stage 3. At the time she lived in Houston and was able to go to MD Anderson for the start of her interferon treatment. But has since moved to PA. She, after complaining of stomach pain, was diagnosed with gastritis in August 2012. She lost 13 pounds in a month and lived with this pain. In mid September she went back to the ER and when they did a CT it showed mets in her liver, pancreas and lungs. She is 45 and has a 13 yr old daughter and is a single mom.
      She went home and awaited Yervoy to get approved, in the meantime her cancer grew and she was hospitalized again oct 7th. I flew in to be with her and have slept in the hospital for 5 nights now. It’s unbelievable to me how much this has progressed already.
      Good news today is that she is BRAF + and instead of Yervoy they will be giving her zelboraf. I’m SO hopeful that she will do well on this treatment. We just lost our mom to a pulmonary embolism in Jan and as a family, have dealt with so much. I just want to wish all of you well, fighters, survivors, family members. And thank you for sharing your stories, it makes the uncertainty a little more bearable.

    Viewing 8 reply threads
    • Replies
        • October 16, 2012 at 4:18 am
        Mickey n Jo
        Participant

          So sorry to hear about your sister, it's so hard for anyone involved to deal with this, and when there are children to think of it makes it even harder. Zelboraf is the go to drug for fast results. When my husbands PET scan showed mets in his spleen, mediastinum, muscles and subcutaneous the doctors felt that he could not wait for any other treatment to work and they started him on Zel immediately. Two months later, his next PET scan showed a decrease in size of almost all mets. His problem was that he had a lot of side effects from the Zel, so they had to give him a break from the medication and then restart it at a lower dosage. Now he is taking 3 pills morning and night and so far the side effects have been tolerable. Not everyone has the same problems with side effects though and the Zelboraf definitely works. Hope your sister has good results. Keep us posted.

                                                        

          • October 16, 2012 at 4:18 am
          Mickey n Jo
          Participant

            So sorry to hear about your sister, it's so hard for anyone involved to deal with this, and when there are children to think of it makes it even harder. Zelboraf is the go to drug for fast results. When my husbands PET scan showed mets in his spleen, mediastinum, muscles and subcutaneous the doctors felt that he could not wait for any other treatment to work and they started him on Zel immediately. Two months later, his next PET scan showed a decrease in size of almost all mets. His problem was that he had a lot of side effects from the Zel, so they had to give him a break from the medication and then restart it at a lower dosage. Now he is taking 3 pills morning and night and so far the side effects have been tolerable. Not everyone has the same problems with side effects though and the Zelboraf definitely works. Hope your sister has good results. Keep us posted.

                                                          

            • October 16, 2012 at 4:18 am
            Mickey n Jo
            Participant

              So sorry to hear about your sister, it's so hard for anyone involved to deal with this, and when there are children to think of it makes it even harder. Zelboraf is the go to drug for fast results. When my husbands PET scan showed mets in his spleen, mediastinum, muscles and subcutaneous the doctors felt that he could not wait for any other treatment to work and they started him on Zel immediately. Two months later, his next PET scan showed a decrease in size of almost all mets. His problem was that he had a lot of side effects from the Zel, so they had to give him a break from the medication and then restart it at a lower dosage. Now he is taking 3 pills morning and night and so far the side effects have been tolerable. Not everyone has the same problems with side effects though and the Zelboraf definitely works. Hope your sister has good results. Keep us posted.

                                                            

              • October 16, 2012 at 4:28 am
              Richard_K
              Participant
                I too am sorry to read about your sister. Zelboraf is fast acting and for many the side effects are very manageable. I hope that is the case with your sister and that it is long lasting.
                Dick
                  • October 16, 2012 at 11:52 am
                  Laurie from maine
                  Participant

                    hi

                    I am sorry you have had a ot happening for your family. 

                      Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                    We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                    laurie from maine

                    • October 16, 2012 at 11:52 am
                    Laurie from maine
                    Participant

                      hi

                      I am sorry you have had a ot happening for your family. 

                        Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                      We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                      laurie from maine

                      • October 16, 2012 at 11:52 am
                      Laurie from maine
                      Participant

                        hi

                        I am sorry you have had a ot happening for your family. 

                          Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                        We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                        laurie from maine

                        • October 16, 2012 at 11:53 am
                        Laurie from maine
                        Participant

                          hi

                          I am sorry you have had a ot happening for your family. 

                            Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                          We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                          laurie from maine

                          • October 16, 2012 at 11:53 am
                          Laurie from maine
                          Participant

                            hi

                            I am sorry you have had a ot happening for your family. 

                              Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                            We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                            laurie from maine

                            • October 16, 2012 at 11:53 am
                            Laurie from maine
                            Participant

                              hi

                              I am sorry you have had a ot happening for your family. 

                                Zelboraf is fast acting like Dick said so hopefully once she starts she will find she gets relief fairly quick.  I am sorry about your mother.  You sound like a wonderful sister to be writing to us for help and staying with your sister during this hard time.  Take care and keep us updated

                              We will wait for next positive post saying how well the Zelboraf is working and those tumors are shrinking!!!

                              laurie from maine

                              • October 17, 2012 at 1:48 am
                              bikerwife
                              Participant

                                My husband has had wbr and 2 gamma knife treatments. he is on his 6 month of z after 3 weeks on z we could actually see the tumors on his body disappear it works fast. God bless and goodluck. lots of new treatments so keep your head up and pray.

                                • October 17, 2012 at 1:48 am
                                bikerwife
                                Participant

                                  My husband has had wbr and 2 gamma knife treatments. he is on his 6 month of z after 3 weeks on z we could actually see the tumors on his body disappear it works fast. God bless and goodluck. lots of new treatments so keep your head up and pray.

                                  • October 17, 2012 at 1:48 am
                                  bikerwife
                                  Participant

                                    My husband has had wbr and 2 gamma knife treatments. he is on his 6 month of z after 3 weeks on z we could actually see the tumors on his body disappear it works fast. God bless and goodluck. lots of new treatments so keep your head up and pray.

                                  • October 16, 2012 at 4:28 am
                                  Richard_K
                                  Participant
                                    I too am sorry to read about your sister. Zelboraf is fast acting and for many the side effects are very manageable. I hope that is the case with your sister and that it is long lasting.
                                    Dick
                                    • October 16, 2012 at 4:28 am
                                    Richard_K
                                    Participant
                                      I too am sorry to read about your sister. Zelboraf is fast acting and for many the side effects are very manageable. I hope that is the case with your sister and that it is long lasting.
                                      Dick
                                      • October 17, 2012 at 10:32 pm
                                      amyb3517
                                      Participant

                                        thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

                                        She is 36 and has a 3 and 7 yr old.

                                        I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

                                        Amy

                                        • October 17, 2012 at 10:32 pm
                                        amyb3517
                                        Participant

                                          thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

                                          She is 36 and has a 3 and 7 yr old.

                                          I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

                                          Amy

                                          • October 17, 2012 at 10:32 pm
                                          amyb3517
                                          Participant

                                            thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

                                            She is 36 and has a 3 and 7 yr old.

                                            I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

                                            Amy

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