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Third Anti PD1

Forums General Melanoma Community Third Anti PD1

  • Post
    Tina D
    Participant

      I returned from Vanderbilt last night after my third PD1 infusion. Have been feeling pretty good over-all. I have a few days of fatigue abt 1 week after tx, but after a few days, I feel mostly normal. Have been swimming laps at the Y and even got to take our son zip-lining this past weekend! My labs are good with exception of thyroid. They did expect this may happen and once is settles out, I will likely be put on synthroid. Currently it is hyperactive, they then fully expect it to tank. No biggie in the big scheme of things. Sometime after my next infusion and before the 5th one, I will get scans.Hard to believe it is already time for that!! 

      Just wanted to check in,

      Tina

    Viewing 8 reply threads
    • Replies
        BrianP
        Participant

          Hey Tina,

          Sounds like you and I are on the same scheduled.  I had my 3rd infusion on Monday.  I've been feeling pretty good also.  Really can't say I have any recognizeable side effects.  I have a little fatigue but I attribute that more to my anemia than to the anti-PD1.  I've had a history of anemia even prior to melanoma and my numbers haven't gotten back up to normal since coming off interferon last December.  I've had a little drop off in some of my other lab numbers also since starting the treatment.  Probably the most prominent is my WBCs are down to 2.83.  My onc says that's not too unusual.  Hopefully it won't continue to trend down.

          Glad to hear you are staying physically active.  I've been doing quite a bit of biking, swimming and running myself.  I put a high importance on staying physically fit.  I treat it as vital component in fighting the mel. 

          Good luck Tina.  Hope you continue to feel great.

          Brian

          BrianP
          Participant

            Hey Tina,

            Sounds like you and I are on the same scheduled.  I had my 3rd infusion on Monday.  I've been feeling pretty good also.  Really can't say I have any recognizeable side effects.  I have a little fatigue but I attribute that more to my anemia than to the anti-PD1.  I've had a history of anemia even prior to melanoma and my numbers haven't gotten back up to normal since coming off interferon last December.  I've had a little drop off in some of my other lab numbers also since starting the treatment.  Probably the most prominent is my WBCs are down to 2.83.  My onc says that's not too unusual.  Hopefully it won't continue to trend down.

            Glad to hear you are staying physically active.  I've been doing quite a bit of biking, swimming and running myself.  I put a high importance on staying physically fit.  I treat it as vital component in fighting the mel. 

            Good luck Tina.  Hope you continue to feel great.

            Brian

              NYKaren
              Participant
                Hi Tina.
                Glad to hear that you’re feeling good.
                It’s so nice to hear progress reports around here.
                Zip-lining terrified me when my kids were younger–but I guess compared to a little melanoma, it’s nothing.
                Take care,
                Karen
                Tina D
                Participant

                  Thank you, Karen. melanoma can definitely change one's perspective on lots of things. We had the car in for a repair today and turns out something may be drastically wrong — and though I do hope it is not too serious ( AKA expensive) I can not get too upset about it… I'm just like "Hey, I am still so blessed to be here!!" The zip-lining was a lot of fun and too perfectly safe to be scary…you are tethered to a cable at all times so you could not fall even if you tried,lol. Now, I have been on a home-made zipline that was a different story all-together!

                  Best to you, as well!

                  Tina

                  Tina D
                  Participant

                    Thank you, Karen. melanoma can definitely change one's perspective on lots of things. We had the car in for a repair today and turns out something may be drastically wrong — and though I do hope it is not too serious ( AKA expensive) I can not get too upset about it… I'm just like "Hey, I am still so blessed to be here!!" The zip-lining was a lot of fun and too perfectly safe to be scary…you are tethered to a cable at all times so you could not fall even if you tried,lol. Now, I have been on a home-made zipline that was a different story all-together!

                    Best to you, as well!

                    Tina

                    Tina D
                    Participant

                      Thank you, Karen. melanoma can definitely change one's perspective on lots of things. We had the car in for a repair today and turns out something may be drastically wrong — and though I do hope it is not too serious ( AKA expensive) I can not get too upset about it… I'm just like "Hey, I am still so blessed to be here!!" The zip-lining was a lot of fun and too perfectly safe to be scary…you are tethered to a cable at all times so you could not fall even if you tried,lol. Now, I have been on a home-made zipline that was a different story all-together!

                      Best to you, as well!

                      Tina

                      NYKaren
                      Participant
                        Hi Tina.
                        Glad to hear that you’re feeling good.
                        It’s so nice to hear progress reports around here.
                        Zip-lining terrified me when my kids were younger–but I guess compared to a little melanoma, it’s nothing.
                        Take care,
                        Karen
                        NYKaren
                        Participant
                          Hi Tina.
                          Glad to hear that you’re feeling good.
                          It’s so nice to hear progress reports around here.
                          Zip-lining terrified me when my kids were younger–but I guess compared to a little melanoma, it’s nothing.
                          Take care,
                          Karen
                          Tina D
                          Participant

                            Brian… Yes, we must be on EXACTLY the same schedule! I know  Interferon can sure take its toll. I took it for 6 months, but fortunately had no lasting side effects. I would imagine your WBCs will begin to recover, actually. The PD1 shouldn't bring them further down as far as I know, so hopefully your bone marrow is in recovery mode.

                            I hope you also continue to feel good, as well! Are your first follow up scans scheduled yet? I am not sure what week they will do mine, just that it is somewhere between #4 and #5

                            Take Care,

                            Tina

                            Tina D
                            Participant

                              Brian… Yes, we must be on EXACTLY the same schedule! I know  Interferon can sure take its toll. I took it for 6 months, but fortunately had no lasting side effects. I would imagine your WBCs will begin to recover, actually. The PD1 shouldn't bring them further down as far as I know, so hopefully your bone marrow is in recovery mode.

                              I hope you also continue to feel good, as well! Are your first follow up scans scheduled yet? I am not sure what week they will do mine, just that it is somewhere between #4 and #5

                              Take Care,

                              Tina

                              BrianP
                              Participant

                                So right now I guess I'm on week 5 of the study and the first scan is at week 13.  I'm trying not to think too much about it because I know as it gets closer there's going to be some serious scanxiety going on!

                                Brian

                                BrianP
                                Participant

                                  So right now I guess I'm on week 5 of the study and the first scan is at week 13.  I'm trying not to think too much about it because I know as it gets closer there's going to be some serious scanxiety going on!

                                  Brian

                                  BrianP
                                  Participant

                                    So right now I guess I'm on week 5 of the study and the first scan is at week 13.  I'm trying not to think too much about it because I know as it gets closer there's going to be some serious scanxiety going on!

                                    Brian

                                    Tina D
                                    Participant

                                      Brian… Yes, we must be on EXACTLY the same schedule! I know  Interferon can sure take its toll. I took it for 6 months, but fortunately had no lasting side effects. I would imagine your WBCs will begin to recover, actually. The PD1 shouldn't bring them further down as far as I know, so hopefully your bone marrow is in recovery mode.

                                      I hope you also continue to feel good, as well! Are your first follow up scans scheduled yet? I am not sure what week they will do mine, just that it is somewhere between #4 and #5

                                      Take Care,

                                      Tina

                                    BrianP
                                    Participant

                                      Hey Tina,

                                      Sounds like you and I are on the same scheduled.  I had my 3rd infusion on Monday.  I've been feeling pretty good also.  Really can't say I have any recognizeable side effects.  I have a little fatigue but I attribute that more to my anemia than to the anti-PD1.  I've had a history of anemia even prior to melanoma and my numbers haven't gotten back up to normal since coming off interferon last December.  I've had a little drop off in some of my other lab numbers also since starting the treatment.  Probably the most prominent is my WBCs are down to 2.83.  My onc says that's not too unusual.  Hopefully it won't continue to trend down.

                                      Glad to hear you are staying physically active.  I've been doing quite a bit of biking, swimming and running myself.  I put a high importance on staying physically fit.  I treat it as vital component in fighting the mel. 

                                      Good luck Tina.  Hope you continue to feel great.

                                      Brian

                                      aldakota22
                                      Participant

                                        Really glad that things are looking so much better  for you.In my prayers that the next scans are only positive.Beat the Beast.     Al

                                        aldakota22
                                        Participant

                                          Really glad that things are looking so much better  for you.In my prayers that the next scans are only positive.Beat the Beast.     Al

                                          aldakota22
                                          Participant

                                            Really glad that things are looking so much better  for you.In my prayers that the next scans are only positive.Beat the Beast.     Al

                                              Tina D
                                              Participant

                                                Thank you, Al.. I have been watching your progress as well and praying for good results for you!

                                                Take Care,

                                                Tina

                                                Tina D
                                                Participant

                                                  Thank you, Al.. I have been watching your progress as well and praying for good results for you!

                                                  Take Care,

                                                  Tina

                                                  Tina D
                                                  Participant

                                                    Thank you, Al.. I have been watching your progress as well and praying for good results for you!

                                                    Take Care,

                                                    Tina

                                                  Cgillett
                                                  Participant
                                                    Hi I am new here. My brother started pd1 yesterday after no improvement on il2 bio chemo and yervoy. He is having extreme fatigue already. Any info on what helps and how long last. He is stage IV and his tumors have grown at scary rate. Just want to help him
                                                    Any way I can. I would appreciate any tips that would help him. Thanks and God Bless everyone, Carol
                                                    Cgillett
                                                    Participant
                                                      Hi I am new here. My brother started pd1 yesterday after no improvement on il2 bio chemo and yervoy. He is having extreme fatigue already. Any info on what helps and how long last. He is stage IV and his tumors have grown at scary rate. Just want to help him
                                                      Any way I can. I would appreciate any tips that would help him. Thanks and God Bless everyone, Carol
                                                        Tina D
                                                        Participant

                                                          Carol, I am sorry, it sounds like he has been through a lot already. Generally I feel pretty good. I have a few days of fatigue about a week out from treatment. I have a friend who get s the fatigue the day following treatment that lasts for a couple days. The Dr said it is not cumulative in nature so it does not get worse the more treatments you have. If anything, they say it gets better.I know it is important to stay hydrated. also – they stressed that any respiratory symptoms need to be reported promptly – such as ANY cough or shortness of breath.

                                                          Generally it is pretty well tolerated, better than yervoy for most people. How did he do on the yervoy?. I had treatment Monday and today for the first time I have actually spent most of the day in bed with fatigue, but for the most part I have felt very good. Hopefully in a day or two he will get feeling better!!

                                                          Tina

                                                          Tina D
                                                          Participant

                                                            Carol, I am sorry, it sounds like he has been through a lot already. Generally I feel pretty good. I have a few days of fatigue about a week out from treatment. I have a friend who get s the fatigue the day following treatment that lasts for a couple days. The Dr said it is not cumulative in nature so it does not get worse the more treatments you have. If anything, they say it gets better.I know it is important to stay hydrated. also – they stressed that any respiratory symptoms need to be reported promptly – such as ANY cough or shortness of breath.

                                                            Generally it is pretty well tolerated, better than yervoy for most people. How did he do on the yervoy?. I had treatment Monday and today for the first time I have actually spent most of the day in bed with fatigue, but for the most part I have felt very good. Hopefully in a day or two he will get feeling better!!

                                                            Tina

                                                            SteveH230
                                                            Participant
                                                              Hi Tina,

                                                              We were at Vanderbilt yesterday and Heather got dose #2 (PD-1). She is feeling pretty good but like you is tired. She is taking a very long nap right now actually. After the infusion we still had to eat dinner and drive 4 hours back to Atlanta, so treatment days are tiring enough as they are! Glad to hear things are going well for you as well, rest up and take care.

                                                              Steve

                                                              SteveH230
                                                              Participant
                                                                Hi Tina,

                                                                We were at Vanderbilt yesterday and Heather got dose #2 (PD-1). She is feeling pretty good but like you is tired. She is taking a very long nap right now actually. After the infusion we still had to eat dinner and drive 4 hours back to Atlanta, so treatment days are tiring enough as they are! Glad to hear things are going well for you as well, rest up and take care.

                                                                Steve

                                                                Cgillett
                                                                Participant
                                                                  Amen
                                                                  Cgillett
                                                                  Participant
                                                                    Amen
                                                                    Cgillett
                                                                    Participant
                                                                      Amen
                                                                      SteveH230
                                                                      Participant
                                                                        Hi Tina,

                                                                        We were at Vanderbilt yesterday and Heather got dose #2 (PD-1). She is feeling pretty good but like you is tired. She is taking a very long nap right now actually. After the infusion we still had to eat dinner and drive 4 hours back to Atlanta, so treatment days are tiring enough as they are! Glad to hear things are going well for you as well, rest up and take care.

                                                                        Steve

                                                                        Cgillett
                                                                        Participant
                                                                          Tina
                                                                          Thank you for responding . He did okay on Yervoy. Fatigue was the big problem but that took a while to start . I think the second round . He has slight stomache issue but it was controlled and he could finish the treatment. Just report diarreha right away so they can keep it under control. His tumors make breathing difficult anyway so we’ll have to watch closly. Thank you for the info and the encouragement. It is humbling to hear stories like yours of such courage and determantion. I will pass this in to him. He dosnt feel well enough right now but soon he will! I will be praying for you and all of the melanoma warriors. Beating the beast , God Strong.
                                                                          Cgillett
                                                                          Participant
                                                                            Tina
                                                                            Thank you for responding . He did okay on Yervoy. Fatigue was the big problem but that took a while to start . I think the second round . He has slight stomache issue but it was controlled and he could finish the treatment. Just report diarreha right away so they can keep it under control. His tumors make breathing difficult anyway so we’ll have to watch closly. Thank you for the info and the encouragement. It is humbling to hear stories like yours of such courage and determantion. I will pass this in to him. He dosnt feel well enough right now but soon he will! I will be praying for you and all of the melanoma warriors. Beating the beast , God Strong.
                                                                            Cgillett
                                                                            Participant
                                                                              Tina
                                                                              Thank you for responding . He did okay on Yervoy. Fatigue was the big problem but that took a while to start . I think the second round . He has slight stomache issue but it was controlled and he could finish the treatment. Just report diarreha right away so they can keep it under control. His tumors make breathing difficult anyway so we’ll have to watch closly. Thank you for the info and the encouragement. It is humbling to hear stories like yours of such courage and determantion. I will pass this in to him. He dosnt feel well enough right now but soon he will! I will be praying for you and all of the melanoma warriors. Beating the beast , God Strong.
                                                                              Tina D
                                                                              Participant

                                                                                Carol, I am sorry, it sounds like he has been through a lot already. Generally I feel pretty good. I have a few days of fatigue about a week out from treatment. I have a friend who get s the fatigue the day following treatment that lasts for a couple days. The Dr said it is not cumulative in nature so it does not get worse the more treatments you have. If anything, they say it gets better.I know it is important to stay hydrated. also – they stressed that any respiratory symptoms need to be reported promptly – such as ANY cough or shortness of breath.

                                                                                Generally it is pretty well tolerated, better than yervoy for most people. How did he do on the yervoy?. I had treatment Monday and today for the first time I have actually spent most of the day in bed with fatigue, but for the most part I have felt very good. Hopefully in a day or two he will get feeling better!!

                                                                                Tina

                                                                              Cgillett
                                                                              Participant
                                                                                Hi I am new here. My brother started pd1 yesterday after no improvement on il2 bio chemo and yervoy. He is having extreme fatigue already. Any info on what helps and how long last. He is stage IV and his tumors have grown at scary rate. Just want to help him
                                                                                Any way I can. I would appreciate any tips that would help him. Thanks and God Bless everyone, Carol
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