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A big day for me!

Forums General Melanoma Community A big day for me!

  • Post
    Ali
    Participant

      I regret not being active on the board for a while.  Good to see you guys still fighting hard.

      One year ago today they found 25 tumors in my brain.  Lots more around the body.  I had just finished IL-2.  We did IPI and Temodar.  I only got one dose of IPI, due to colitis.  It cleared my brain by the 12 week scans.

      I regret not being active on the board for a while.  Good to see you guys still fighting hard.

      One year ago today they found 25 tumors in my brain.  Lots more around the body.  I had just finished IL-2.  We did IPI and Temodar.  I only got one dose of IPI, due to colitis.  It cleared my brain by the 12 week scans.

      My brain is still clean.  We found a few new, very small tumors this spring.  A couple near my adrenal gland continued to grow (even after we radiated them this January).  They started hurting.  Pain pills kind of hurting.  We found a PD-1 trial I qualified for (Moffitt just started one for those of us with dose-limiting, stage 3 toxicities from IPI).  Within days of my first dose I was off my pain pills and could feel a difference in my axilla tumors.

      I had my third dose this week.  I feel great.  I feel so very lucky to still be be here and still be fighting this disease.  I am so grateful for the chance to try antiPD-1.  My prayer from the beginning was that I would be able to try everything.  To not let my kids wonder if something else would have worked.  It is always humbling to have a prayer answered.

      I hope and pray for the best outcomes for my fellow warriors.  This has been a great year for melanoma research, let's see that translate into a good year for us with the disease as well!!  Keep up the good fight!

      Ali

    Viewing 35 reply threads
    • Replies
        washoegal
        Participant

          So happy to hear great news!  Hope you continue on the path to recovery!

           

          Mary

          Stage 3

          washoegal
          Participant

            So happy to hear great news!  Hope you continue on the path to recovery!

             

            Mary

            Stage 3

            washoegal
            Participant

              So happy to hear great news!  Hope you continue on the path to recovery!

               

              Mary

              Stage 3

              JerryfromFauq
              Participant

                lOVE IT !!!!! 

                PRAYING FOR CONTIINUING SUCCESS.

                JerryfromFauq
                Participant

                  lOVE IT !!!!! 

                  PRAYING FOR CONTIINUING SUCCESS.

                  JerryfromFauq
                  Participant

                    lOVE IT !!!!! 

                    PRAYING FOR CONTIINUING SUCCESS.

                    Brendan
                    Participant

                      Excellent news, Ali.  Great to hear from you.  Wishing you continuted success in your fight.  

                      Brendan

                      Brendan
                      Participant

                        Excellent news, Ali.  Great to hear from you.  Wishing you continuted success in your fight.  

                        Brendan

                        Brendan
                        Participant

                          Excellent news, Ali.  Great to hear from you.  Wishing you continuted success in your fight.  

                          Brendan

                            Ali
                            Participant

                              It is the BMS one.  We are on the same schedule then!  Hope we have good news to share soon.  Good luck!!!

                              Ali
                              Participant

                                It is the BMS one.  We are on the same schedule then!  Hope we have good news to share soon.  Good luck!!!

                                Ali
                                Participant

                                  It is the BMS one.  We are on the same schedule then!  Hope we have good news to share soon.  Good luck!!!

                                Linny
                                Participant

                                  When I hadn't seen you post in a while I was getting concerned. I'm so happy to see that the anti PD-1 is working for you and that you're feeling great. You go girl!

                                  Linny
                                  Participant

                                    When I hadn't seen you post in a while I was getting concerned. I'm so happy to see that the anti PD-1 is working for you and that you're feeling great. You go girl!

                                    Linny
                                    Participant

                                      When I hadn't seen you post in a while I was getting concerned. I'm so happy to see that the anti PD-1 is working for you and that you're feeling great. You go girl!

                                      Phil S
                                      Participant
                                        Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife)
                                        Phil S
                                        Participant
                                          Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife)
                                          Phil S
                                          Participant
                                            Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife)
                                            Richard_K
                                            Participant
                                              Oh so very happy for you. Keep it up and all the best.
                                              Richard_K
                                              Participant
                                                Oh so very happy for you. Keep it up and all the best.
                                                Richard_K
                                                Participant
                                                  Oh so very happy for you. Keep it up and all the best.
                                                  DeniseK
                                                  Participant

                                                    Ali,

                                                    Your story has touched me like you won't believe.  I was told last week to prepare for hospice.  I have 7 brain mets and several others throughout my body, expecially in my lungs.  My goal is to get into an Anti PD 1 trial.  I'll be starting Ipi this week.  I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks.  My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial.  Needless to say I was devastated.  I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!!  Your story is so inspiring to me!  

                                                    Did the Ipi clear your brain?  I've been told that Ipi doesn't break the brain barrier but the cells do.  How soon did you see results?  

                                                    Thanks again for posting, you've given me more hope.

                                                    All my best 

                                                    Denise

                                                    DeniseK
                                                    Participant

                                                      Ali,

                                                      Your story has touched me like you won't believe.  I was told last week to prepare for hospice.  I have 7 brain mets and several others throughout my body, expecially in my lungs.  My goal is to get into an Anti PD 1 trial.  I'll be starting Ipi this week.  I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks.  My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial.  Needless to say I was devastated.  I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!!  Your story is so inspiring to me!  

                                                      Did the Ipi clear your brain?  I've been told that Ipi doesn't break the brain barrier but the cells do.  How soon did you see results?  

                                                      Thanks again for posting, you've given me more hope.

                                                      All my best 

                                                      Denise

                                                      DeniseK
                                                      Participant

                                                        Ali,

                                                        Your story has touched me like you won't believe.  I was told last week to prepare for hospice.  I have 7 brain mets and several others throughout my body, expecially in my lungs.  My goal is to get into an Anti PD 1 trial.  I'll be starting Ipi this week.  I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks.  My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial.  Needless to say I was devastated.  I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!!  Your story is so inspiring to me!  

                                                        Did the Ipi clear your brain?  I've been told that Ipi doesn't break the brain barrier but the cells do.  How soon did you see results?  

                                                        Thanks again for posting, you've given me more hope.

                                                        All my best 

                                                        Denise

                                                        awillett1991
                                                        Participant
                                                          Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.

                                                          Amy

                                                          awillett1991
                                                          Participant
                                                            Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.

                                                            Amy

                                                            awillett1991
                                                            Participant
                                                              Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.

                                                              Amy

                                                              aldakota22
                                                              Participant

                                                                Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast.  Al

                                                                aldakota22
                                                                Participant

                                                                  Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast.  Al

                                                                  aldakota22
                                                                  Participant

                                                                    Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast.  Al

                                                                    Swanee
                                                                    Participant

                                                                      Hi Ali,

                                                                      So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest.  So happy for you that you get another try and this one looks like a good one!  Will keep you in my heart for a good outcome and finally and end to this nasty beast!  Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave.   Love and blessings of healing and strength be yours.

                                                                      Swanee 

                                                                      Swanee
                                                                      Participant

                                                                        Hi Ali,

                                                                        So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest.  So happy for you that you get another try and this one looks like a good one!  Will keep you in my heart for a good outcome and finally and end to this nasty beast!  Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave.   Love and blessings of healing and strength be yours.

                                                                        Swanee 

                                                                        Swanee
                                                                        Participant

                                                                          Hi Ali,

                                                                          So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest.  So happy for you that you get another try and this one looks like a good one!  Will keep you in my heart for a good outcome and finally and end to this nasty beast!  Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave.   Love and blessings of healing and strength be yours.

                                                                          Swanee 

                                                                          jP85
                                                                          Participant
                                                                            Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

                                                                            Jenny

                                                                            jP85
                                                                            Participant
                                                                              Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

                                                                              Jenny

                                                                              jP85
                                                                              Participant
                                                                                Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!

                                                                                Jenny

                                                                                Tina D
                                                                                Participant

                                                                                  This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.

                                                                                  Thank you for posting this wonderful report and encouraging news ๐Ÿ™‚

                                                                                  Tina

                                                                                  Tina D
                                                                                  Participant

                                                                                    This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.

                                                                                    Thank you for posting this wonderful report and encouraging news ๐Ÿ™‚

                                                                                    Tina

                                                                                    Tina D
                                                                                    Participant

                                                                                      This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.

                                                                                      Thank you for posting this wonderful report and encouraging news ๐Ÿ™‚

                                                                                      Tina

                                                                                      Ali
                                                                                      Participant

                                                                                        Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar.  I don't know for sure which medication it was, or if it was the effects of combining the two together.  My dr. suspected it was the IPI, as Temodar doesn't isn't that potent.  Although my response was not normal, it is possible.  I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same.  You either respond or you don't, no matter where your tumors are.  I'm sure there is more to it than that, but that was a comfort to me.  IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there.  I'll be praying for you! 

                                                                                        Ali

                                                                                        Ali
                                                                                        Participant

                                                                                          Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar.  I don't know for sure which medication it was, or if it was the effects of combining the two together.  My dr. suspected it was the IPI, as Temodar doesn't isn't that potent.  Although my response was not normal, it is possible.  I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same.  You either respond or you don't, no matter where your tumors are.  I'm sure there is more to it than that, but that was a comfort to me.  IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there.  I'll be praying for you! 

                                                                                          Ali

                                                                                          Ali
                                                                                          Participant

                                                                                            Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar.  I don't know for sure which medication it was, or if it was the effects of combining the two together.  My dr. suspected it was the IPI, as Temodar doesn't isn't that potent.  Although my response was not normal, it is possible.  I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same.  You either respond or you don't, no matter where your tumors are.  I'm sure there is more to it than that, but that was a comfort to me.  IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there.  I'll be praying for you! 

                                                                                            Ali

                                                                                            fairlinda
                                                                                            Participant

                                                                                              Jenny,

                                                                                              My fiance is battling brain mets and ones elsewhere.  Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk).  He had whole brain radiation for 5 consecutive days beginning 4-3-13.  We left the hospital on 4-12 and shortly after he had his first dose of Yervoy.  a few days later he fell in the bathroom and hit his head on the tile.  So back we went to the hospital and that called for another scan to be sure there was no damage from the fall.  It was discovered he had more tumors since 3 weeks before and the ones he had before were growing.  Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf.  Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size.  We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week.  The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.  

                                                                                              What is your next treatment option.  So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources:  those who are fighting.

                                                                                              Best,  Linda

                                                                                               

                                                                                              fairlinda
                                                                                              Participant

                                                                                                Jenny,

                                                                                                My fiance is battling brain mets and ones elsewhere.  Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk).  He had whole brain radiation for 5 consecutive days beginning 4-3-13.  We left the hospital on 4-12 and shortly after he had his first dose of Yervoy.  a few days later he fell in the bathroom and hit his head on the tile.  So back we went to the hospital and that called for another scan to be sure there was no damage from the fall.  It was discovered he had more tumors since 3 weeks before and the ones he had before were growing.  Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf.  Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size.  We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week.  The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.  

                                                                                                What is your next treatment option.  So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources:  those who are fighting.

                                                                                                Best,  Linda

                                                                                                 

                                                                                                fairlinda
                                                                                                Participant

                                                                                                  Jenny,

                                                                                                  My fiance is battling brain mets and ones elsewhere.  Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk).  He had whole brain radiation for 5 consecutive days beginning 4-3-13.  We left the hospital on 4-12 and shortly after he had his first dose of Yervoy.  a few days later he fell in the bathroom and hit his head on the tile.  So back we went to the hospital and that called for another scan to be sure there was no damage from the fall.  It was discovered he had more tumors since 3 weeks before and the ones he had before were growing.  Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf.  Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size.  We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week.  The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.  

                                                                                                  What is your next treatment option.  So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources:  those who are fighting.

                                                                                                  Best,  Linda

                                                                                                   

                                                                                                  jP85
                                                                                                  Participant
                                                                                                    Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

                                                                                                    On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

                                                                                                    My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

                                                                                                    Jenny

                                                                                                    jP85
                                                                                                    Participant
                                                                                                      Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

                                                                                                      On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

                                                                                                      My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

                                                                                                      Jenny

                                                                                                      jP85
                                                                                                      Participant
                                                                                                        Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.

                                                                                                        On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.

                                                                                                        My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.

                                                                                                        Jenny

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