ipi nivo side effects- dose 3 delayed or cancelled due to liver AST/ ALT/GGT
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ipi nivo side effects- dose 3 delayed or cancelled due to liver AST/ ALT/GGT

› Forums › General Melanoma Community › ipi nivo side effects- dose 3 delayed or cancelled due to liver AST/ ALT/GGT

  • Post
    • December 13, 2016 at 10:48 am
    debwray
    Participant

    Hi Folks,

    Went for dose 3 of the combo yesterday. Bloods came back with AST and ALT over 3 times uppe rnormal limit and GGT at 94. ALP slightly raised. LDH – had gone to 760 over the 550 ULN used in UK ….so now on 50 mg prednissolone daily till Thursday when I go for retest . Crossing my fingers liver results will be calming by then.

    Question is-(mets are in my liver – 3 that can be seen on CT and numerous others detectable by MRI.)

    Does anyone know if LDH can increase in response to autoimmune hepatitis ?

    Would LDH increase if IPI/ Nivo was at work damaging the cells of the tumours ?

    I know it is early days and am probably lucky they caught this before I had infusion 3 as that would possibly have had me over 5 x ULN and then – no more Ipi for me for sure. I guess we are trying to hit the goldilocks zone of ramped up immume system- not too hot and revved up that it damages essential organs- and not too cold that it has no impact- we want just enough to kill the melanoma.

    Any words of wisdom out there? Have been told might be an idea to pack a bag on Thursday on the off chance they may keep me in if numbers are still going up.

    Thanks Deb

     

     

     

     

Viewing 11 reply threads
  • Replies
      • December 13, 2016 at 2:25 pm
      Hukill
      Participant

      Around my 3rd dose of the combo I had been running fever for several days, went to the ER and was put on antibiotics (augmenton). Liver counts were normal in ER. 3 days later at my dr appt liver counts were 6 times above normal. Was admitted to hospital, taken off antibiotics and over several days liver counts came down back to normal. 4th dose was not delayed and just had 4th dose of nivo alone and liver counts have been good. They think it was the antibiotic that caused my liver counts to go up. I start back on combo on 12/23.

        • December 13, 2016 at 5:23 pm
        debwray
        Participant

        Hi,

        Thanks for the reply.  Third dose does seem to be the average point where auto immune hepatitis can kick in. Were you treated with steroids in hospital to get liver results back to normal ? I have been on fairly hefty doses of cipro and rifampin for the last two months but that was stopped as Gamma GT was high- and the antibiotics should have done the job by now if they were going to- after severe infection in old surgical site on knee and possible bone infection.  

        Oncologist pretty certain that ipi nivo culprit in my case. Hoping steroids work quickly .. expecting to be on taper for a few weeks so that gets us through Christmas and New Year I guess.

        Thank you for takingthe time to reply- and interesting to see they put you on nivo only for one dose too…

        Best wishes

        Deb

         

         

        • December 13, 2016 at 7:53 pm
        Hukill
        Participant

        I have never been placed on steriods during treatment even though I have had at least 1 side effect since the second week after the first dose. To me side effects are a welcome thing as I know my body is reacting to the drugs and if my immune system is attacking me I know that melanoma is whats for dinner. I must have confused you on the nivo. I completed all 4 doses of ipi/nivo and just completed the 4 doses of nivo by itself. On 12/23 I go back to the ipi/nivo combo every 90 days for the maintanance phase until October of 2018. I have my next scan in early January. My oncologist even spoke about stopping the ipi as he said it seems to stay active inside the body for a very long period and further doses may not be needed but I am glad to be going back on it because I want to make sure I have the full effect.

        • December 14, 2016 at 12:31 am
        jennunicorn
        Participant

        That's a different regimen of the combo than I have heard of… what my onc told me is I get the 4 combo doses of Ipi/Nivo and then it goes to Nivo only every two weeks until NED for a while or progression. Haven't heard anyone doing it the way you are… why is it different I wonder? When I did Ipi alone, it was 4 doses and then maintenace was every 90 days until I hit one year on treatment… didn't make it all the way since things changed… but sounds similar to what you're describing. 

        • December 14, 2016 at 7:39 pm
        Hukill
        Participant

        The only thing I can think that may make my treatment plan different is cost. I don't know how your treatment is being paid for but if it is an insurance company maybe your plan is all they will pay for. The VA is paying for my treatment and the drugs alone for the entire 120 weeks is $800,000 and had to be signed off on by the finacial board of the VA hospital I am being treated at. I am also the first vet at this hospital, a very large VA hospital, to receive the combo as I am the first vet whose over all health was good enough to risk the side effects. I think because I am the first and the cost is so high that I get faster appointments as my success or failure may decide if the VA spends this amount on other vets. My oncologist did discuss last visit about stopping the IPI as he thinks it may stay active in the immune system for months after the last dose. I think he wants to look at my scan in early January to see. Other than vitiligo and dry mouth, which I think after 11 weeks is almost back to normal, I am doing great. I go to work every day and pretty much you cant tell I have 7 tumors in my lungs.

        • December 15, 2016 at 12:02 am
        jennunicorn
        Participant

        I see, yeah, maybe the VA is going about it differently for cost reasons. Mine just gets fully paid for by insurance I guess, so it's just standard protocol for me.

        So glad you're feeling well and are able to have a normal day to day life, hope you continue to feel good and those lung tumors shrink away!

        Happy Holidays!

        • December 15, 2016 at 12:02 am
        jennunicorn
        Participant

        I see, yeah, maybe the VA is going about it differently for cost reasons. Mine just gets fully paid for by insurance I guess, so it's just standard protocol for me.

        So glad you're feeling well and are able to have a normal day to day life, hope you continue to feel good and those lung tumors shrink away!

        Happy Holidays!

        • December 15, 2016 at 12:02 am
        jennunicorn
        Participant

        I see, yeah, maybe the VA is going about it differently for cost reasons. Mine just gets fully paid for by insurance I guess, so it's just standard protocol for me.

        So glad you're feeling well and are able to have a normal day to day life, hope you continue to feel good and those lung tumors shrink away!

        Happy Holidays!

        • December 14, 2016 at 7:39 pm
        Hukill
        Participant

        The only thing I can think that may make my treatment plan different is cost. I don't know how your treatment is being paid for but if it is an insurance company maybe your plan is all they will pay for. The VA is paying for my treatment and the drugs alone for the entire 120 weeks is $800,000 and had to be signed off on by the finacial board of the VA hospital I am being treated at. I am also the first vet at this hospital, a very large VA hospital, to receive the combo as I am the first vet whose over all health was good enough to risk the side effects. I think because I am the first and the cost is so high that I get faster appointments as my success or failure may decide if the VA spends this amount on other vets. My oncologist did discuss last visit about stopping the IPI as he thinks it may stay active in the immune system for months after the last dose. I think he wants to look at my scan in early January to see. Other than vitiligo and dry mouth, which I think after 11 weeks is almost back to normal, I am doing great. I go to work every day and pretty much you cant tell I have 7 tumors in my lungs.

        • December 14, 2016 at 7:39 pm
        Hukill
        Participant

        The only thing I can think that may make my treatment plan different is cost. I don't know how your treatment is being paid for but if it is an insurance company maybe your plan is all they will pay for. The VA is paying for my treatment and the drugs alone for the entire 120 weeks is $800,000 and had to be signed off on by the finacial board of the VA hospital I am being treated at. I am also the first vet at this hospital, a very large VA hospital, to receive the combo as I am the first vet whose over all health was good enough to risk the side effects. I think because I am the first and the cost is so high that I get faster appointments as my success or failure may decide if the VA spends this amount on other vets. My oncologist did discuss last visit about stopping the IPI as he thinks it may stay active in the immune system for months after the last dose. I think he wants to look at my scan in early January to see. Other than vitiligo and dry mouth, which I think after 11 weeks is almost back to normal, I am doing great. I go to work every day and pretty much you cant tell I have 7 tumors in my lungs.

        • December 14, 2016 at 12:31 am
        jennunicorn
        Participant

        That's a different regimen of the combo than I have heard of… what my onc told me is I get the 4 combo doses of Ipi/Nivo and then it goes to Nivo only every two weeks until NED for a while or progression. Haven't heard anyone doing it the way you are… why is it different I wonder? When I did Ipi alone, it was 4 doses and then maintenace was every 90 days until I hit one year on treatment… didn't make it all the way since things changed… but sounds similar to what you're describing. 

        • December 14, 2016 at 12:31 am
        jennunicorn
        Participant

        That's a different regimen of the combo than I have heard of… what my onc told me is I get the 4 combo doses of Ipi/Nivo and then it goes to Nivo only every two weeks until NED for a while or progression. Haven't heard anyone doing it the way you are… why is it different I wonder? When I did Ipi alone, it was 4 doses and then maintenace was every 90 days until I hit one year on treatment… didn't make it all the way since things changed… but sounds similar to what you're describing. 

        • December 13, 2016 at 7:53 pm
        Hukill
        Participant

        I have never been placed on steriods during treatment even though I have had at least 1 side effect since the second week after the first dose. To me side effects are a welcome thing as I know my body is reacting to the drugs and if my immune system is attacking me I know that melanoma is whats for dinner. I must have confused you on the nivo. I completed all 4 doses of ipi/nivo and just completed the 4 doses of nivo by itself. On 12/23 I go back to the ipi/nivo combo every 90 days for the maintanance phase until October of 2018. I have my next scan in early January. My oncologist even spoke about stopping the ipi as he said it seems to stay active inside the body for a very long period and further doses may not be needed but I am glad to be going back on it because I want to make sure I have the full effect.

        • December 13, 2016 at 7:53 pm
        Hukill
        Participant

        I have never been placed on steriods during treatment even though I have had at least 1 side effect since the second week after the first dose. To me side effects are a welcome thing as I know my body is reacting to the drugs and if my immune system is attacking me I know that melanoma is whats for dinner. I must have confused you on the nivo. I completed all 4 doses of ipi/nivo and just completed the 4 doses of nivo by itself. On 12/23 I go back to the ipi/nivo combo every 90 days for the maintanance phase until October of 2018. I have my next scan in early January. My oncologist even spoke about stopping the ipi as he said it seems to stay active inside the body for a very long period and further doses may not be needed but I am glad to be going back on it because I want to make sure I have the full effect.

        • December 13, 2016 at 5:23 pm
        debwray
        Participant

        Hi,

        Thanks for the reply.  Third dose does seem to be the average point where auto immune hepatitis can kick in. Were you treated with steroids in hospital to get liver results back to normal ? I have been on fairly hefty doses of cipro and rifampin for the last two months but that was stopped as Gamma GT was high- and the antibiotics should have done the job by now if they were going to- after severe infection in old surgical site on knee and possible bone infection.  

        Oncologist pretty certain that ipi nivo culprit in my case. Hoping steroids work quickly .. expecting to be on taper for a few weeks so that gets us through Christmas and New Year I guess.

        Thank you for takingthe time to reply- and interesting to see they put you on nivo only for one dose too…

        Best wishes

        Deb

         

         

        • December 13, 2016 at 5:23 pm
        debwray
        Participant

        Hi,

        Thanks for the reply.  Third dose does seem to be the average point where auto immune hepatitis can kick in. Were you treated with steroids in hospital to get liver results back to normal ? I have been on fairly hefty doses of cipro and rifampin for the last two months but that was stopped as Gamma GT was high- and the antibiotics should have done the job by now if they were going to- after severe infection in old surgical site on knee and possible bone infection.  

        Oncologist pretty certain that ipi nivo culprit in my case. Hoping steroids work quickly .. expecting to be on taper for a few weeks so that gets us through Christmas and New Year I guess.

        Thank you for takingthe time to reply- and interesting to see they put you on nivo only for one dose too…

        Best wishes

        Deb

         

         

      • December 13, 2016 at 2:25 pm
      Hukill
      Participant

      Around my 3rd dose of the combo I had been running fever for several days, went to the ER and was put on antibiotics (augmenton). Liver counts were normal in ER. 3 days later at my dr appt liver counts were 6 times above normal. Was admitted to hospital, taken off antibiotics and over several days liver counts came down back to normal. 4th dose was not delayed and just had 4th dose of nivo alone and liver counts have been good. They think it was the antibiotic that caused my liver counts to go up. I start back on combo on 12/23.

      • December 13, 2016 at 2:25 pm
      Hukill
      Participant

      Around my 3rd dose of the combo I had been running fever for several days, went to the ER and was put on antibiotics (augmenton). Liver counts were normal in ER. 3 days later at my dr appt liver counts were 6 times above normal. Was admitted to hospital, taken off antibiotics and over several days liver counts came down back to normal. 4th dose was not delayed and just had 4th dose of nivo alone and liver counts have been good. They think it was the antibiotic that caused my liver counts to go up. I start back on combo on 12/23.

      • December 13, 2016 at 4:52 pm
      RayPMcConnell
      Participant

      I was diagnosed Stage 4 with mets throughout my lungs in January of 2015.

      I was only able to receive two of four infusions of the ipi/nivo combo in April of 2015 before treatment was stopped due to auto-immune hepatitis, meningitis, and diabetes.

      I was hospitalized for two weeks, but CT scans revealed that the treatment was working, and I was NED by October of 2015.

      Prayers that it works as well for you as it did for me.

      Ray

       

        • December 13, 2016 at 5:30 pm
        debwray
        Participant

        Yo !  

        Way to go Ray. Always lifts my spirits to hear a good news story and yours is great although the other side effects sound pretty grim but a price I would gladly pay for a NED response. Thanks for adding fuel to the hopeful side of my mind set….No way round this.. just got to keep plodding forward…. one step at a time..

        Best of wishes

        Deb

         

        • December 13, 2016 at 5:30 pm
        debwray
        Participant

        Yo !  

        Way to go Ray. Always lifts my spirits to hear a good news story and yours is great although the other side effects sound pretty grim but a price I would gladly pay for a NED response. Thanks for adding fuel to the hopeful side of my mind set….No way round this.. just got to keep plodding forward…. one step at a time..

        Best of wishes

        Deb

         

        • December 13, 2016 at 5:30 pm
        debwray
        Participant

        Yo !  

        Way to go Ray. Always lifts my spirits to hear a good news story and yours is great although the other side effects sound pretty grim but a price I would gladly pay for a NED response. Thanks for adding fuel to the hopeful side of my mind set….No way round this.. just got to keep plodding forward…. one step at a time..

        Best of wishes

        Deb

         

        • December 13, 2016 at 7:50 pm
        Cindyco
        Participant

        Ray, this gives us so much hope, since my mom only made it to one dose of ipi/nivo. She was worried that it was all for nothing since it's been more than a month since her first dose, and that she would need to start over.   But, it sounds like even having even a little bit of the combo in your system can do some good. Thanks for sharing!

        • December 13, 2016 at 7:50 pm
        Cindyco
        Participant

        Ray, this gives us so much hope, since my mom only made it to one dose of ipi/nivo. She was worried that it was all for nothing since it's been more than a month since her first dose, and that she would need to start over.   But, it sounds like even having even a little bit of the combo in your system can do some good. Thanks for sharing!

        • December 13, 2016 at 7:50 pm
        Cindyco
        Participant

        Ray, this gives us so much hope, since my mom only made it to one dose of ipi/nivo. She was worried that it was all for nothing since it's been more than a month since her first dose, and that she would need to start over.   But, it sounds like even having even a little bit of the combo in your system can do some good. Thanks for sharing!

      • December 13, 2016 at 4:52 pm
      RayPMcConnell
      Participant

      I was diagnosed Stage 4 with mets throughout my lungs in January of 2015.

      I was only able to receive two of four infusions of the ipi/nivo combo in April of 2015 before treatment was stopped due to auto-immune hepatitis, meningitis, and diabetes.

      I was hospitalized for two weeks, but CT scans revealed that the treatment was working, and I was NED by October of 2015.

      Prayers that it works as well for you as it did for me.

      Ray

       

      • December 13, 2016 at 4:52 pm
      RayPMcConnell
      Participant

      I was diagnosed Stage 4 with mets throughout my lungs in January of 2015.

      I was only able to receive two of four infusions of the ipi/nivo combo in April of 2015 before treatment was stopped due to auto-immune hepatitis, meningitis, and diabetes.

      I was hospitalized for two weeks, but CT scans revealed that the treatment was working, and I was NED by October of 2015.

      Prayers that it works as well for you as it did for me.

      Ray

       

      • December 13, 2016 at 7:48 pm
      Cindyco
      Participant

      My mom had to stop after one dose of ipi/nivo in October.  Her liver numbers shot up a couple of weeks after and she was put on high dose steroids (60 prednisone and 1000 cellcept) for hepatitis and colitis.  She had to stay in the hospital for two and a half weeks, but while she was on the steroids she was actually doing very well and did not have any pain and wasn't symptomatic at all.  There was even a period where they needed to keep increasing her steroid dosage because the liver numbers increased again after an initial drop.  While it was hard for us to stay positive while it was all happening, in hindsight it was better for her to stay hospital during that time because she was constantly monitored by her doctors, they checked her liver numbers every day, she didn't have to worry about staying hydrated because she had the IV, etc…  Plus, managing side effects early is supposed to let you resume treatment faster, so it might be better for you in the long run.

        • December 14, 2016 at 3:52 pm
        debwray
        Participant

        Thanks for sharing- don't fancy Christmas in hospital.. but think the advice to bring an overnight bag is a just in case one as its about 130miles round trip if I need some things from home… Spent last night throwing up but all calmed down after 2 hrs and slept like a baby. Will see what the numberstell us tomorrow.

        Deb

         

        • December 14, 2016 at 3:52 pm
        debwray
        Participant

        Thanks for sharing- don't fancy Christmas in hospital.. but think the advice to bring an overnight bag is a just in case one as its about 130miles round trip if I need some things from home… Spent last night throwing up but all calmed down after 2 hrs and slept like a baby. Will see what the numberstell us tomorrow.

        Deb

         

        • December 14, 2016 at 3:52 pm
        debwray
        Participant

        Thanks for sharing- don't fancy Christmas in hospital.. but think the advice to bring an overnight bag is a just in case one as its about 130miles round trip if I need some things from home… Spent last night throwing up but all calmed down after 2 hrs and slept like a baby. Will see what the numberstell us tomorrow.

        Deb

         

      • December 13, 2016 at 7:48 pm
      Cindyco
      Participant

      My mom had to stop after one dose of ipi/nivo in October.  Her liver numbers shot up a couple of weeks after and she was put on high dose steroids (60 prednisone and 1000 cellcept) for hepatitis and colitis.  She had to stay in the hospital for two and a half weeks, but while she was on the steroids she was actually doing very well and did not have any pain and wasn't symptomatic at all.  There was even a period where they needed to keep increasing her steroid dosage because the liver numbers increased again after an initial drop.  While it was hard for us to stay positive while it was all happening, in hindsight it was better for her to stay hospital during that time because she was constantly monitored by her doctors, they checked her liver numbers every day, she didn't have to worry about staying hydrated because she had the IV, etc…  Plus, managing side effects early is supposed to let you resume treatment faster, so it might be better for you in the long run.

      • December 13, 2016 at 7:48 pm
      Cindyco
      Participant

      My mom had to stop after one dose of ipi/nivo in October.  Her liver numbers shot up a couple of weeks after and she was put on high dose steroids (60 prednisone and 1000 cellcept) for hepatitis and colitis.  She had to stay in the hospital for two and a half weeks, but while she was on the steroids she was actually doing very well and did not have any pain and wasn't symptomatic at all.  There was even a period where they needed to keep increasing her steroid dosage because the liver numbers increased again after an initial drop.  While it was hard for us to stay positive while it was all happening, in hindsight it was better for her to stay hospital during that time because she was constantly monitored by her doctors, they checked her liver numbers every day, she didn't have to worry about staying hydrated because she had the IV, etc…  Plus, managing side effects early is supposed to let you resume treatment faster, so it might be better for you in the long run.

      • December 14, 2016 at 4:08 pm
      Mat
      Participant

      To the extent helpful, I only received 3 combined infusions (ipi/nivo) before stopping due to (non-liver) side effects.  I've been on nivo since and have been stable for ~11 months.

      • December 14, 2016 at 4:08 pm
      Mat
      Participant

      To the extent helpful, I only received 3 combined infusions (ipi/nivo) before stopping due to (non-liver) side effects.  I've been on nivo since and have been stable for ~11 months.

      • December 14, 2016 at 4:08 pm
      Mat
      Participant

      To the extent helpful, I only received 3 combined infusions (ipi/nivo) before stopping due to (non-liver) side effects.  I've been on nivo since and have been stable for ~11 months.

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