Third Anti PD1
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Third Anti PD1

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  • Post
    • September 11, 2013 at 2:46 pm
    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
      • September 12, 2013 at 1:43 am
      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

        • September 12, 2013 at 2:53 am
        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
        • September 13, 2013 at 12:27 am
        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

        • September 13, 2013 at 12:27 am
        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

        • September 13, 2013 at 12:27 am
        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

        • September 12, 2013 at 2:53 am
        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
        • September 12, 2013 at 2:53 am
        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
        • September 13, 2013 at 12:24 am
        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

        • September 13, 2013 at 12:55 am
        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

        • September 13, 2013 at 12:55 am
        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

        • September 13, 2013 at 12:55 am
        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

        • September 13, 2013 at 12:24 am
        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

        • September 13, 2013 at 12:24 am
        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

      • September 12, 2013 at 1:43 am
      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

      • September 12, 2013 at 1:43 am
      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

      • September 12, 2013 at 11:58 pm
      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

        • September 13, 2013 at 12:29 am
        Tina D
        Participant

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

        Take Care,

        Tina

        • September 13, 2013 at 12:29 am
        Tina D
        Participant

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

        Take Care,

        Tina

        • September 13, 2013 at 12:29 am
        Tina D
        Participant

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

        Take Care,

        Tina

      • September 12, 2013 at 11:58 pm
      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

      • September 12, 2013 at 11:58 pm
      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

      • September 13, 2013 at 3:12 am
      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
      • September 13, 2013 at 3:12 am
      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
        • September 13, 2013 at 9:13 pm
        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

        • September 13, 2013 at 9:13 pm
        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

        • September 13, 2013 at 9:43 pm
        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

        • September 13, 2013 at 9:43 pm
        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

        • September 13, 2013 at 10:51 pm
        Cgillett
        Participant
        Amen
        • September 13, 2013 at 10:51 pm
        Cgillett
        Participant
        Amen
        • September 13, 2013 at 10:51 pm
        Cgillett
        Participant
        Amen
        • September 13, 2013 at 9:43 pm
        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

        • September 13, 2013 at 10:43 pm
        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.
        • September 13, 2013 at 10:43 pm
        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.
        • September 13, 2013 at 10:43 pm
        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.
        • September 13, 2013 at 9:13 pm
        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

      • September 13, 2013 at 3:12 am
      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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