Good news, and not. New plan…poss PD1 trial

› Forums › General Melanoma Community › Good news, and not. New plan…poss PD1 trial

  • Post
    • June 4, 2013 at 2:41 pm
    Tina D
    Participant

      Hi all,

      Hi all,

      It has been a while since I updated, I had to postpone my scans by 2 weeks due to my husband needing surgery. My PET shows no new areas, so for that we are incredibly grateful. But, the tumors that had initially begun to shrink fafter ipi, have begun growing again 🙁 . SO… My Dr is running a PD1 trial, I may get into that, or there may be other options. He is at ASCO & will be in touch tomorrow with all possible scenarios for treatment that he thinks appropriate at this point. This was incredibly disappointing, but, as always, my days belong to the Lord, and we continue to trust Him. I am down to 5 mg prednisone daily ( for the pituitary inflammation from ipi) and doing well on that. Big decisions to make over the next days, and I will try to post an update as we decide what to do next.

      For now… One day at a time….

      Tina D

    Viewing 20 reply threads
    • Replies
        • June 4, 2013 at 6:55 pm
        awillett1991
        Participant
          Always praying for you and yours Tina!!!

          Amy

          • June 4, 2013 at 6:55 pm
          awillett1991
          Participant
            Always praying for you and yours Tina!!!

            Amy

            • June 4, 2013 at 6:55 pm
            awillett1991
            Participant
              Always praying for you and yours Tina!!!

              Amy

              • June 4, 2013 at 10:12 pm
              aldakota22
              Participant

                Good to see you posting again. Was wondering how you are doing. Seems to be some positives in your battle.No new tumors and there are some more options opening for you. Keep that PMA . This treatment is the one you have been waiting for.Praying that all goes well with your next  doctors visit. Beat the Beast.  Al

                • June 4, 2013 at 10:12 pm
                aldakota22
                Participant

                  Good to see you posting again. Was wondering how you are doing. Seems to be some positives in your battle.No new tumors and there are some more options opening for you. Keep that PMA . This treatment is the one you have been waiting for.Praying that all goes well with your next  doctors visit. Beat the Beast.  Al

                  • June 4, 2013 at 10:12 pm
                  aldakota22
                  Participant

                    Good to see you posting again. Was wondering how you are doing. Seems to be some positives in your battle.No new tumors and there are some more options opening for you. Keep that PMA . This treatment is the one you have been waiting for.Praying that all goes well with your next  doctors visit. Beat the Beast.  Al

                    • June 5, 2013 at 2:12 am
                    POW
                    Participant

                      Oh, Tina, I'm sorry for your disappointment! And to have your husband go through surgery, too! The last month must have been really rough for you. But I remain hopeful that you can get into an anti-PD1 trial; I heard that there are a lot of sites opening up these days. And as you say, after the ASCO meetings, there may be something even better in the offing. 

                      Hang in there, hold onto your positive mental attitude, and let us know how things go the next time you see your onc. I'll be praying for you!

                      • June 5, 2013 at 2:12 am
                      POW
                      Participant

                        Oh, Tina, I'm sorry for your disappointment! And to have your husband go through surgery, too! The last month must have been really rough for you. But I remain hopeful that you can get into an anti-PD1 trial; I heard that there are a lot of sites opening up these days. And as you say, after the ASCO meetings, there may be something even better in the offing. 

                        Hang in there, hold onto your positive mental attitude, and let us know how things go the next time you see your onc. I'll be praying for you!

                        • June 5, 2013 at 2:12 am
                        POW
                        Participant

                          Oh, Tina, I'm sorry for your disappointment! And to have your husband go through surgery, too! The last month must have been really rough for you. But I remain hopeful that you can get into an anti-PD1 trial; I heard that there are a lot of sites opening up these days. And as you say, after the ASCO meetings, there may be something even better in the offing. 

                          Hang in there, hold onto your positive mental attitude, and let us know how things go the next time you see your onc. I'll be praying for you!

                          • June 5, 2013 at 3:41 am
                          DeniseK
                          Participant

                            Hi Tina,

                            I think the Anti PD 1 trial would be a great option.  I'm going to the specialist on June 26th to look into my options as well.  As far as I know the Z is still working but it freaks me out that it could stop at anytime.  Your positive attitude is inspirational!!  

                            Hang in there.

                            All my best,

                            Denise

                            • June 5, 2013 at 3:41 am
                            DeniseK
                            Participant

                              Hi Tina,

                              I think the Anti PD 1 trial would be a great option.  I'm going to the specialist on June 26th to look into my options as well.  As far as I know the Z is still working but it freaks me out that it could stop at anytime.  Your positive attitude is inspirational!!  

                              Hang in there.

                              All my best,

                              Denise

                              • June 5, 2013 at 3:41 am
                              DeniseK
                              Participant

                                Hi Tina,

                                I think the Anti PD 1 trial would be a great option.  I'm going to the specialist on June 26th to look into my options as well.  As far as I know the Z is still working but it freaks me out that it could stop at anytime.  Your positive attitude is inspirational!!  

                                Hang in there.

                                All my best,

                                Denise

                                • June 5, 2013 at 12:55 pm
                                NYKaren
                                Participant
                                  Hi Tina,
                                  You’ve certainly had your plate full lately.
                                  I’ve been wondering how you’re doing.
                                  I too am aiming for a PD1 trial, the Merck without the chemo arm.
                                  I know you’ll let us know how your appointment goes.

                                  Denise, it’s frightening to me too…I’ve been on alternate zel dosing schedule, and those suckers start growing again after 1 week off. So I’m having scans next week to see if I qualify for trial.
                                  Fingers crossed for all.
                                  Karen

                                  • June 5, 2013 at 12:55 pm
                                  NYKaren
                                  Participant
                                    Hi Tina,
                                    You’ve certainly had your plate full lately.
                                    I’ve been wondering how you’re doing.
                                    I too am aiming for a PD1 trial, the Merck without the chemo arm.
                                    I know you’ll let us know how your appointment goes.

                                    Denise, it’s frightening to me too…I’ve been on alternate zel dosing schedule, and those suckers start growing again after 1 week off. So I’m having scans next week to see if I qualify for trial.
                                    Fingers crossed for all.
                                    Karen

                                    • June 5, 2013 at 12:55 pm
                                    NYKaren
                                    Participant
                                      Hi Tina,
                                      You’ve certainly had your plate full lately.
                                      I’ve been wondering how you’re doing.
                                      I too am aiming for a PD1 trial, the Merck without the chemo arm.
                                      I know you’ll let us know how your appointment goes.

                                      Denise, it’s frightening to me too…I’ve been on alternate zel dosing schedule, and those suckers start growing again after 1 week off. So I’m having scans next week to see if I qualify for trial.
                                      Fingers crossed for all.
                                      Karen

                                      • June 7, 2013 at 1:18 am
                                      Tina D
                                      Participant

                                        Thank you all. It has been pretty busy. Husband ended up needing 3 surgeries in as many weeks. Long story… but, thankfully he is currently doing well and plan is for him to go home ( again) tomorrow. Spoke w/ Drs office today, they are seeking trials for me. Trying to find one that does not require a biopsy since my tumors are very deep. Will hear back again by next week. In the mean time, I am looking forward to being back home with hubby!

                                        • June 7, 2013 at 1:18 am
                                        Tina D
                                        Participant

                                          Thank you all. It has been pretty busy. Husband ended up needing 3 surgeries in as many weeks. Long story… but, thankfully he is currently doing well and plan is for him to go home ( again) tomorrow. Spoke w/ Drs office today, they are seeking trials for me. Trying to find one that does not require a biopsy since my tumors are very deep. Will hear back again by next week. In the mean time, I am looking forward to being back home with hubby!

                                          • June 7, 2013 at 1:18 am
                                          Tina D
                                          Participant

                                            Thank you all. It has been pretty busy. Husband ended up needing 3 surgeries in as many weeks. Long story… but, thankfully he is currently doing well and plan is for him to go home ( again) tomorrow. Spoke w/ Drs office today, they are seeking trials for me. Trying to find one that does not require a biopsy since my tumors are very deep. Will hear back again by next week. In the mean time, I am looking forward to being back home with hubby!

                                            • June 13, 2013 at 3:41 am
                                            5374brian
                                            Participant

                                              We have been on a 40 day wait to be accepted in the Merck trial and finally made it. Keri had to make it through WBR and intestine surgery.  Keri's body has not given a strong response to the IPI so her oncologist helped guide us into the trial. she had her scans and vitals done Monday and Tuesday and now are waiting for our call Thursday on her first infusion date. As you know you can never give up. We feel so blessed to have made it this far. Wishing you good luck and great health.. 

                                              • June 13, 2013 at 3:41 am
                                              5374brian
                                              Participant

                                                We have been on a 40 day wait to be accepted in the Merck trial and finally made it. Keri had to make it through WBR and intestine surgery.  Keri's body has not given a strong response to the IPI so her oncologist helped guide us into the trial. she had her scans and vitals done Monday and Tuesday and now are waiting for our call Thursday on her first infusion date. As you know you can never give up. We feel so blessed to have made it this far. Wishing you good luck and great health.. 

                                                • June 13, 2013 at 3:41 am
                                                5374brian
                                                Participant

                                                  We have been on a 40 day wait to be accepted in the Merck trial and finally made it. Keri had to make it through WBR and intestine surgery.  Keri's body has not given a strong response to the IPI so her oncologist helped guide us into the trial. she had her scans and vitals done Monday and Tuesday and now are waiting for our call Thursday on her first infusion date. As you know you can never give up. We feel so blessed to have made it this far. Wishing you good luck and great health.. 

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