I have joined the ‘Roid’ club
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I have joined the ‘Roid’ club

› Forums › General Melanoma Community › I have joined the ‘Roid’ club

  • Post
    • May 28, 2016 at 6:30 pm
    WithinMySkin
    Participant

    Steroids, that is.

     
    I had my second Ipi/Nivo infusion back on the 6th of May, and everything was smooth sailing until about 2 weeks ago. Started with mouth sores (which I'm told by my team is much more common than previously mentioned in the stats) which was annoying, but not a big deal. Never really got the Ipi rash…my black fly bites itch worse than the bumps on my back. But then the diarrhea started, with lots of cramping. Imodium to the rescue there. Then nausea…UGH…the nausea. I couldn't even LOOK at food. I'm down 7 lbs in about a week. Nothing seemed to help with that. They did blood work, and my liver enzymes are 7 times normal, so they finally decided to roid me up. I now feel like I have rejoined the living.
     
    So my question: do I continue treatment? Did those who got hit with steroids end their treatment or continue? I was supposed to have my third infusion last week, but we've delayed that due to symptoms, and I have a follow-up on Tuesday, so I'd like to have my questions in order by then. I do have good news that I KNOW it's already been working – the silver dollar sized met in my leg has disappeared totally!! 🙂 While excited, I'm weary of ending or delaying treatment when I've only gotten half the prescribed doses. So continue with steroids and continue treatment? Any insight is greatly appreciated! (And if Ed has any of your fabulous videos, that'd be amazing!)
     
    Hope everyone is enjoying this holiday weekend. And a big thank you to all those who have served in the US armed forces. One day of remembrance doesn't give your fallen comrades the recognition they deserve. My thoughts are with you every day, but especially this weekend.
     
    Lauren
Viewing 17 reply threads
  • Replies
      • May 28, 2016 at 7:25 pm
      jennunicorn
      Participant

      Sorry to hear about your recent side effects and needing to join the roid club.

      I actually woke up super nauseous today which is a first for me, it's been a week since my Ipi infusion. How long did or has the nausea lasted for you? It's hard to look at a computer screen at the moment and I've had a few run to the bathroom moments only to have a bit of dry heaving. I am hoping this is just a one day fluke of feeling like crap. 

      After my second Ipi infusion I remember getting some mouth sores, but haven't had any since then. Those really make eating fun….not.

      I've read mixed decisions about continuing treatment after getting steroids. If immodium helped your diarrhea then it's not colitis, so that's good. Just need liver enzymes to get back to normal and stomach to feel better and you should be ok to continue, those are my feelings on it. Super exciting that you can SEE it working, can't get better than that 🙂

      All the best,

      • May 28, 2016 at 7:25 pm
      jennunicorn
      Participant

      Sorry to hear about your recent side effects and needing to join the roid club.

      I actually woke up super nauseous today which is a first for me, it's been a week since my Ipi infusion. How long did or has the nausea lasted for you? It's hard to look at a computer screen at the moment and I've had a few run to the bathroom moments only to have a bit of dry heaving. I am hoping this is just a one day fluke of feeling like crap. 

      After my second Ipi infusion I remember getting some mouth sores, but haven't had any since then. Those really make eating fun….not.

      I've read mixed decisions about continuing treatment after getting steroids. If immodium helped your diarrhea then it's not colitis, so that's good. Just need liver enzymes to get back to normal and stomach to feel better and you should be ok to continue, those are my feelings on it. Super exciting that you can SEE it working, can't get better than that 🙂

      All the best,

        • May 29, 2016 at 12:20 pm
        WithinMySkin
        Participant
        Hey Jenn! So sorry to hear you’ve been having nausea, too. Mine started about 2 weeks ago, and just like you, it’s a constant discomfort with sudden spurts of (lots of) dry heaving or vomiting. None of the medications (compazine and zofran) seemed to help, until I went on steroids. Even water made me nauseous. Feeling so crappy is never fun – I hope it subsides quickly for you!! And yes, knowing the treatment is working is such a relief!
        • May 29, 2016 at 12:20 pm
        WithinMySkin
        Participant
        Hey Jenn! So sorry to hear you’ve been having nausea, too. Mine started about 2 weeks ago, and just like you, it’s a constant discomfort with sudden spurts of (lots of) dry heaving or vomiting. None of the medications (compazine and zofran) seemed to help, until I went on steroids. Even water made me nauseous. Feeling so crappy is never fun – I hope it subsides quickly for you!! And yes, knowing the treatment is working is such a relief!
        • May 29, 2016 at 12:20 pm
        WithinMySkin
        Participant
        Hey Jenn! So sorry to hear you’ve been having nausea, too. Mine started about 2 weeks ago, and just like you, it’s a constant discomfort with sudden spurts of (lots of) dry heaving or vomiting. None of the medications (compazine and zofran) seemed to help, until I went on steroids. Even water made me nauseous. Feeling so crappy is never fun – I hope it subsides quickly for you!! And yes, knowing the treatment is working is such a relief!
        • June 7, 2016 at 6:54 pm
        EkinIstanbul
        Participant

        Sorry to hear that! but great to hear that your treatment is working. I finished Interferon and will start Yervoy 3mg / 4 doses- for protection. (I'm stage3) Fingers crossed. Wishing you all the best. 

        Ekin

         

        • June 7, 2016 at 6:54 pm
        EkinIstanbul
        Participant

        Sorry to hear that! but great to hear that your treatment is working. I finished Interferon and will start Yervoy 3mg / 4 doses- for protection. (I'm stage3) Fingers crossed. Wishing you all the best. 

        Ekin

         

        • June 7, 2016 at 6:54 pm
        EkinIstanbul
        Participant

        Sorry to hear that! but great to hear that your treatment is working. I finished Interferon and will start Yervoy 3mg / 4 doses- for protection. (I'm stage3) Fingers crossed. Wishing you all the best. 

        Ekin

         

        • June 7, 2016 at 7:04 pm
        EkinIstanbul
        Participant

        Hi Jen

        I'm a new member in this community- just read your story and we have similar situations- unfortunately! just wanted to say hi and would like to have your comments if you have any- I will start Ipi/ yervoy treatment on Thursday and Im a bit scared. Just finished Interferon for one year- it's been a tough one and just ready for the final 3 months with Yervoy.

         

        I had been diagnosed 1 year ago- stage 3 with 2mm minimal metastas in 1 lenf node. All lenf nodes removed in my left inguinal area. As you mentioned I am not wait and see type so we decided to make Yervoy to avoid recurrence. Fingers crossed – I am very curious and will be reading your posts. Hope I will not have severe side effects. Thanks for sharing and updates. They are very helpful since we don't know what to expect! 

        Wishing you all the best and fast recovery with your nausea! take care 

        Ekin

         

        • June 7, 2016 at 7:04 pm
        EkinIstanbul
        Participant

        Hi Jen

        I'm a new member in this community- just read your story and we have similar situations- unfortunately! just wanted to say hi and would like to have your comments if you have any- I will start Ipi/ yervoy treatment on Thursday and Im a bit scared. Just finished Interferon for one year- it's been a tough one and just ready for the final 3 months with Yervoy.

         

        I had been diagnosed 1 year ago- stage 3 with 2mm minimal metastas in 1 lenf node. All lenf nodes removed in my left inguinal area. As you mentioned I am not wait and see type so we decided to make Yervoy to avoid recurrence. Fingers crossed – I am very curious and will be reading your posts. Hope I will not have severe side effects. Thanks for sharing and updates. They are very helpful since we don't know what to expect! 

        Wishing you all the best and fast recovery with your nausea! take care 

        Ekin

         

        • June 7, 2016 at 7:04 pm
        EkinIstanbul
        Participant

        Hi Jen

        I'm a new member in this community- just read your story and we have similar situations- unfortunately! just wanted to say hi and would like to have your comments if you have any- I will start Ipi/ yervoy treatment on Thursday and Im a bit scared. Just finished Interferon for one year- it's been a tough one and just ready for the final 3 months with Yervoy.

         

        I had been diagnosed 1 year ago- stage 3 with 2mm minimal metastas in 1 lenf node. All lenf nodes removed in my left inguinal area. As you mentioned I am not wait and see type so we decided to make Yervoy to avoid recurrence. Fingers crossed – I am very curious and will be reading your posts. Hope I will not have severe side effects. Thanks for sharing and updates. They are very helpful since we don't know what to expect! 

        Wishing you all the best and fast recovery with your nausea! take care 

        Ekin

         

        • June 7, 2016 at 8:58 pm
        jennunicorn
        Participant

        Compared to Interferon, Yervoy should seem pretty easy as long as you don't get any major side effects. Hope it goes well for you. Thankfully that nausea was a one day deal, no more since then. Been mostly dealing with joint pain, but I can handle that.

        Thanks for reaching out

        Take care,

        • June 7, 2016 at 8:58 pm
        jennunicorn
        Participant

        Compared to Interferon, Yervoy should seem pretty easy as long as you don't get any major side effects. Hope it goes well for you. Thankfully that nausea was a one day deal, no more since then. Been mostly dealing with joint pain, but I can handle that.

        Thanks for reaching out

        Take care,

        • June 7, 2016 at 8:58 pm
        jennunicorn
        Participant

        Compared to Interferon, Yervoy should seem pretty easy as long as you don't get any major side effects. Hope it goes well for you. Thankfully that nausea was a one day deal, no more since then. Been mostly dealing with joint pain, but I can handle that.

        Thanks for reaching out

        Take care,

      • May 28, 2016 at 7:25 pm
      jennunicorn
      Participant

      Sorry to hear about your recent side effects and needing to join the roid club.

      I actually woke up super nauseous today which is a first for me, it's been a week since my Ipi infusion. How long did or has the nausea lasted for you? It's hard to look at a computer screen at the moment and I've had a few run to the bathroom moments only to have a bit of dry heaving. I am hoping this is just a one day fluke of feeling like crap. 

      After my second Ipi infusion I remember getting some mouth sores, but haven't had any since then. Those really make eating fun….not.

      I've read mixed decisions about continuing treatment after getting steroids. If immodium helped your diarrhea then it's not colitis, so that's good. Just need liver enzymes to get back to normal and stomach to feel better and you should be ok to continue, those are my feelings on it. Super exciting that you can SEE it working, can't get better than that 🙂

      All the best,

      • May 28, 2016 at 7:53 pm
      ed williams
      Participant

      Hi Lauren, I hope this will help in making your decision!!!!  Best wishes!!!Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

      • May 28, 2016 at 7:53 pm
      ed williams
      Participant

      Hi Lauren, I hope this will help in making your decision!!!!  Best wishes!!!Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

        • May 29, 2016 at 12:22 pm
        WithinMySkin
        Participant
        This is perfect, Ed! Dr. Flaherty was fervently nodding at parts, so I can kinda guess what the plan may be. Thank you!!
        • May 29, 2016 at 12:22 pm
        WithinMySkin
        Participant
        This is perfect, Ed! Dr. Flaherty was fervently nodding at parts, so I can kinda guess what the plan may be. Thank you!!
        • May 29, 2016 at 12:22 pm
        WithinMySkin
        Participant
        This is perfect, Ed! Dr. Flaherty was fervently nodding at parts, so I can kinda guess what the plan may be. Thank you!!
      • May 28, 2016 at 7:53 pm
      ed williams
      Participant

      Hi Lauren, I hope this will help in making your decision!!!!  Best wishes!!!Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

      • May 29, 2016 at 1:59 pm
      Mat
      Participant

      Lauren, to the extent helpful, I was told by Sloan that only 40 percent of patients can tolerate all 4 combined infusions.  If you are on high dose steroids, they will likely hold your next infusion until you are at 10mg or less (for prednisone).  Once you continue, moving to nivo-only is obviously an option.

      • May 29, 2016 at 1:59 pm
      Mat
      Participant

      Lauren, to the extent helpful, I was told by Sloan that only 40 percent of patients can tolerate all 4 combined infusions.  If you are on high dose steroids, they will likely hold your next infusion until you are at 10mg or less (for prednisone).  Once you continue, moving to nivo-only is obviously an option.

      • May 29, 2016 at 1:59 pm
      Mat
      Participant

      Lauren, to the extent helpful, I was told by Sloan that only 40 percent of patients can tolerate all 4 combined infusions.  If you are on high dose steroids, they will likely hold your next infusion until you are at 10mg or less (for prednisone).  Once you continue, moving to nivo-only is obviously an option.

        • May 30, 2016 at 1:02 pm
        WithinMySkin
        Participant
        Wow, that’s a surprising number on completing the combo treatment! I don’t feel like such a wimp now 😉 We may indeed move to Nivo only – I’ll see what the team thinks tomorrow. Thanks, Mat!
        • May 30, 2016 at 1:02 pm
        WithinMySkin
        Participant
        Wow, that’s a surprising number on completing the combo treatment! I don’t feel like such a wimp now 😉 We may indeed move to Nivo only – I’ll see what the team thinks tomorrow. Thanks, Mat!
        • May 30, 2016 at 1:02 pm
        WithinMySkin
        Participant
        Wow, that’s a surprising number on completing the combo treatment! I don’t feel like such a wimp now 😉 We may indeed move to Nivo only – I’ll see what the team thinks tomorrow. Thanks, Mat!
      • May 29, 2016 at 6:06 pm
      Morris
      Participant

      Hello all

      Just registered so this is my first posting.  

      I am also a current member of the roids (Prednisone) club.  Thankfully I just finished my 4th Ippy/Novo infusion May 4, 2016 but on hold to continue with Novolumab alone every 2 weeks.  I feel very fortunate to have pretty much breezed through all four infusions.  Well, up until right after the 4th IV.  After the 2nd I developed a rash on chest and back, never really itched bad, some minor fatigue from time to time.

      Few days after the 4th infusion the dreaded diarrah started.  Noticed my fever increasing to 99-101 for a couple of days along with abdominal cramping.  Contacted doctor Monday, May 16, 2016 and was advised to go to ER.  Figured I would be in and out with some meds, not the case, admitted until the following Friday.  

      Started me on heavy IV antibiotics, Prednisone, and Dilaudid for pain, liquid diet for first few days. Did a CT of abdomen showing severe inflmation of small intestine.  Finally started feeling better and they lifted liquid diet.  I ate like a horse.  The food at MDA Houston is actually really good.

      Home now and feeling better.  They still have me on Prednison slowly decreasing every 3 days.  Started at 80MG, now at 50MG all the way down to 10MG.  I will be glad to be off of it.  Heart palpatations/arthmia has been driving me nuts, I eat all the time, don't sleep well, way too wired at times and fatigue other times.

      Some good news!  I was scheduled to go in that following week for re-staging CT scans to see if the Ippy/Novo was working.  My doctor said since I was in hospital and they did a CT of abdomen they would go ahead and scan my chest.  The chest CT showed good results, the spots on right lobe were almost gone, the 1.7CM in left was down to .7mm.

      Hopefully I will be off the Perdnisone soon and start the 2 week Novolumab treatments. 

       

       

       

       

      • May 29, 2016 at 6:06 pm
      Morris
      Participant

      Hello all

      Just registered so this is my first posting.  

      I am also a current member of the roids (Prednisone) club.  Thankfully I just finished my 4th Ippy/Novo infusion May 4, 2016 but on hold to continue with Novolumab alone every 2 weeks.  I feel very fortunate to have pretty much breezed through all four infusions.  Well, up until right after the 4th IV.  After the 2nd I developed a rash on chest and back, never really itched bad, some minor fatigue from time to time.

      Few days after the 4th infusion the dreaded diarrah started.  Noticed my fever increasing to 99-101 for a couple of days along with abdominal cramping.  Contacted doctor Monday, May 16, 2016 and was advised to go to ER.  Figured I would be in and out with some meds, not the case, admitted until the following Friday.  

      Started me on heavy IV antibiotics, Prednisone, and Dilaudid for pain, liquid diet for first few days. Did a CT of abdomen showing severe inflmation of small intestine.  Finally started feeling better and they lifted liquid diet.  I ate like a horse.  The food at MDA Houston is actually really good.

      Home now and feeling better.  They still have me on Prednison slowly decreasing every 3 days.  Started at 80MG, now at 50MG all the way down to 10MG.  I will be glad to be off of it.  Heart palpatations/arthmia has been driving me nuts, I eat all the time, don't sleep well, way too wired at times and fatigue other times.

      Some good news!  I was scheduled to go in that following week for re-staging CT scans to see if the Ippy/Novo was working.  My doctor said since I was in hospital and they did a CT of abdomen they would go ahead and scan my chest.  The chest CT showed good results, the spots on right lobe were almost gone, the 1.7CM in left was down to .7mm.

      Hopefully I will be off the Perdnisone soon and start the 2 week Novolumab treatments. 

       

       

       

       

      • May 29, 2016 at 6:06 pm
      Morris
      Participant

      Hello all

      Just registered so this is my first posting.  

      I am also a current member of the roids (Prednisone) club.  Thankfully I just finished my 4th Ippy/Novo infusion May 4, 2016 but on hold to continue with Novolumab alone every 2 weeks.  I feel very fortunate to have pretty much breezed through all four infusions.  Well, up until right after the 4th IV.  After the 2nd I developed a rash on chest and back, never really itched bad, some minor fatigue from time to time.

      Few days after the 4th infusion the dreaded diarrah started.  Noticed my fever increasing to 99-101 for a couple of days along with abdominal cramping.  Contacted doctor Monday, May 16, 2016 and was advised to go to ER.  Figured I would be in and out with some meds, not the case, admitted until the following Friday.  

      Started me on heavy IV antibiotics, Prednisone, and Dilaudid for pain, liquid diet for first few days. Did a CT of abdomen showing severe inflmation of small intestine.  Finally started feeling better and they lifted liquid diet.  I ate like a horse.  The food at MDA Houston is actually really good.

      Home now and feeling better.  They still have me on Prednison slowly decreasing every 3 days.  Started at 80MG, now at 50MG all the way down to 10MG.  I will be glad to be off of it.  Heart palpatations/arthmia has been driving me nuts, I eat all the time, don't sleep well, way too wired at times and fatigue other times.

      Some good news!  I was scheduled to go in that following week for re-staging CT scans to see if the Ippy/Novo was working.  My doctor said since I was in hospital and they did a CT of abdomen they would go ahead and scan my chest.  The chest CT showed good results, the spots on right lobe were almost gone, the 1.7CM in left was down to .7mm.

      Hopefully I will be off the Perdnisone soon and start the 2 week Novolumab treatments. 

       

       

       

       

        • May 30, 2016 at 1:15 pm
        WithinMySkin
        Participant
        Hi Morris! You’ll find this board is a great place to share and gain info. Glad to hear you made it through all 4 treatments but it sounds like all your side effects hit all at once Yikes! It’s rough, isn’t it?! But hey, you know it’s working with those scans! That piece of mind is huge in dealing with the side effects. HUGE.

        I haven’t had many side effects from the steroids so far – like you, wired at times, eating more (but i need to do that anyway) so overall it’s not too bad. Hopefully they’ll want me to start weaning tomorrow, so I’ll keep you updated.

        • May 30, 2016 at 1:15 pm
        WithinMySkin
        Participant
        Hi Morris! You’ll find this board is a great place to share and gain info. Glad to hear you made it through all 4 treatments but it sounds like all your side effects hit all at once Yikes! It’s rough, isn’t it?! But hey, you know it’s working with those scans! That piece of mind is huge in dealing with the side effects. HUGE.

        I haven’t had many side effects from the steroids so far – like you, wired at times, eating more (but i need to do that anyway) so overall it’s not too bad. Hopefully they’ll want me to start weaning tomorrow, so I’ll keep you updated.

        • May 30, 2016 at 1:15 pm
        WithinMySkin
        Participant
        Hi Morris! You’ll find this board is a great place to share and gain info. Glad to hear you made it through all 4 treatments but it sounds like all your side effects hit all at once Yikes! It’s rough, isn’t it?! But hey, you know it’s working with those scans! That piece of mind is huge in dealing with the side effects. HUGE.

        I haven’t had many side effects from the steroids so far – like you, wired at times, eating more (but i need to do that anyway) so overall it’s not too bad. Hopefully they’ll want me to start weaning tomorrow, so I’ll keep you updated.

      • May 30, 2016 at 3:58 pm
      ed williams
      Participant

      Hi Lauren, I came across this article that will be presented at ASCO 2016 from the Netherlands Cancer Institute in Amsterdam. It is a retrospective analysis of patients with advanced melanoma given a short coarse of ipi (2 doses I believe) followed by Nivo or Pembro. Kind of interesting findings!!!! Best wishes!!! Ed  http://abstract.asco.org/176/AbstView_176_169743.html

        • May 31, 2016 at 1:57 pm
        WithinMySkin
        Participant
        Hey Ed! Very interesting findings! Greatly reduced >grade 3 adverse effects with changing the method of administration. Who would have thought? Makes me lean towards going to Nivo maintenance instead of back on the combo. Thanks for the info!!
        • May 31, 2016 at 1:57 pm
        WithinMySkin
        Participant
        Hey Ed! Very interesting findings! Greatly reduced >grade 3 adverse effects with changing the method of administration. Who would have thought? Makes me lean towards going to Nivo maintenance instead of back on the combo. Thanks for the info!!
        • May 31, 2016 at 1:57 pm
        WithinMySkin
        Participant
        Hey Ed! Very interesting findings! Greatly reduced >grade 3 adverse effects with changing the method of administration. Who would have thought? Makes me lean towards going to Nivo maintenance instead of back on the combo. Thanks for the info!!
      • May 30, 2016 at 3:58 pm
      ed williams
      Participant

      Hi Lauren, I came across this article that will be presented at ASCO 2016 from the Netherlands Cancer Institute in Amsterdam. It is a retrospective analysis of patients with advanced melanoma given a short coarse of ipi (2 doses I believe) followed by Nivo or Pembro. Kind of interesting findings!!!! Best wishes!!! Ed  http://abstract.asco.org/176/AbstView_176_169743.html

      • May 30, 2016 at 3:58 pm
      ed williams
      Participant

      Hi Lauren, I came across this article that will be presented at ASCO 2016 from the Netherlands Cancer Institute in Amsterdam. It is a retrospective analysis of patients with advanced melanoma given a short coarse of ipi (2 doses I believe) followed by Nivo or Pembro. Kind of interesting findings!!!! Best wishes!!! Ed  http://abstract.asco.org/176/AbstView_176_169743.html

      • June 1, 2016 at 5:36 pm
      Bubbles
      Participant

      Given your situation, thought you might appreciate hearing this from ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

      Basically, in the Checkmate 069, ipi/nivo trial….OS at 18 months was similar for those who had to stop treatment due to side effects vs those who completed the doses!!!

      celeste

      • June 1, 2016 at 5:36 pm
      Bubbles
      Participant

      Given your situation, thought you might appreciate hearing this from ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

      Basically, in the Checkmate 069, ipi/nivo trial….OS at 18 months was similar for those who had to stop treatment due to side effects vs those who completed the doses!!!

      celeste

      • June 1, 2016 at 5:36 pm
      Bubbles
      Participant

      Given your situation, thought you might appreciate hearing this from ASCO:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

      Basically, in the Checkmate 069, ipi/nivo trial….OS at 18 months was similar for those who had to stop treatment due to side effects vs those who completed the doses!!!

      celeste

        • June 3, 2016 at 1:20 am
        WithinMySkin
        Participant

        Thanks for the info and update from ASCO, Celeste! These are incredibly positive numbers for response rates, even with stopping treatment!! 

        • June 3, 2016 at 1:20 am
        WithinMySkin
        Participant

        Thanks for the info and update from ASCO, Celeste! These are incredibly positive numbers for response rates, even with stopping treatment!! 

        • June 3, 2016 at 1:20 am
        WithinMySkin
        Participant

        Thanks for the info and update from ASCO, Celeste! These are incredibly positive numbers for response rates, even with stopping treatment!! 

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