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new plan for Dad

Forums General Melanoma Community new plan for Dad

  • Post
    snow white
    Participant

      Dad saw the infectious disease doc today.  Doc does not feel he has fungus, but they will test the spinal fluid for it along with the LMD.  He goes tomorrow for the spinal tap.  In the meantime, Dr. Freeman (Hamid) wants to start Dad on Ipi (Yervoy) possibly next week.  My mom was a bit freaked out when she read the side effects, death being in the first paragraph.  But, i told her that all drugs have side effects, don't read the side effects, deal with them as they come.  So my mighty Warriors, what do you think of this plan?  Is this the expected next step after 5 treatments of Opdivo?  What do I need to know? anything to look out for? Dad tolerated Opdivo with hardly any side effects.

      Any and all thoughts would be greatly appreciated.  Of course I am feeling a bit nervous about anything new, but I also know that we must move ahead with treatment in order to kill the Beast.

      xo Jen

    Viewing 14 reply threads
    • Replies
        debwray
        Participant

          Hi Jen,

          The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

          Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

          Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

          Good luck.

          Deb

          Hugs and kisses

            snow white
            Participant

              Thanks for your reply Deb, it really helped me to understand how this is all working.  We had a good appointment today after the spinal tap, doc was very encouraging.  She seems to think that Dad will do well on ipi due to him doing so well on Opdivo. Mom has calmed down about the side effects, we will take it as it comes.  Hoping and praying that this spinal tap doesn't confirm LMD.  We should know soon. Glad to hear that you were able to reveice your 3rd dose, that is so AWESOME!!!  Keep up the fine fight!

              xo Jen

              snow white
              Participant

                Thanks for your reply Deb, it really helped me to understand how this is all working.  We had a good appointment today after the spinal tap, doc was very encouraging.  She seems to think that Dad will do well on ipi due to him doing so well on Opdivo. Mom has calmed down about the side effects, we will take it as it comes.  Hoping and praying that this spinal tap doesn't confirm LMD.  We should know soon. Glad to hear that you were able to reveice your 3rd dose, that is so AWESOME!!!  Keep up the fine fight!

                xo Jen

                snow white
                Participant

                  Thanks for your reply Deb, it really helped me to understand how this is all working.  We had a good appointment today after the spinal tap, doc was very encouraging.  She seems to think that Dad will do well on ipi due to him doing so well on Opdivo. Mom has calmed down about the side effects, we will take it as it comes.  Hoping and praying that this spinal tap doesn't confirm LMD.  We should know soon. Glad to hear that you were able to reveice your 3rd dose, that is so AWESOME!!!  Keep up the fine fight!

                  xo Jen

                debwray
                Participant

                  Hi Jen,

                  The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

                  Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

                  Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

                  Good luck.

                  Deb

                  Hugs and kisses

                  debwray
                  Participant

                    Hi Jen,

                    The IPI nivo combo attacks melanoma using two different pathways…IPI revs up the immune system and nivo takes away the tumours ability to hide from the immune system. Used together the side effects can be challenging should we say… But different folk get different side effects… And if your mom reads the nivo ones… They are scary too .. But your Dad coped ok.

                    Docs are now looking at gaining nivo and IPI sequentially, as this seems to reap benefits without qyuite as much toxicity. If your tumours express high amounts of pd1 proteins then nivo is likely to be pretty effective on its own… But if not the introducing IPI in to the mix is likely to be beneficial…which is why I was so pleased to get dose 3 of the combo yesterday .Sounds like a good plan. Majority of side effects can be treated with steroids and can be managed.

                    Think your dads team are looking at grabbing the benefits whulstreducing side effects… Probably 4 3 weekly doses of IPI then back to a pd1 nivo or pembro. Would be happy to run with this if it was my family..and if IPI causes too many issues then back to plan A.

                    Good luck.

                    Deb

                    Hugs and kisses

                    Gene_S
                    Participant

                      While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

                      People react to medications differently and you can have a bad reaction to anything.

                      Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

                        snow white
                        Participant

                          Thank you Judy.  The best part is that Dad is very positive and doesn't feel he will have any problems, mind over matter!  I love hearing stories like your husbands, it give so much hope.  Wishing you the best!

                          xo Jen

                          snow white
                          Participant

                            Thank you Judy.  The best part is that Dad is very positive and doesn't feel he will have any problems, mind over matter!  I love hearing stories like your husbands, it give so much hope.  Wishing you the best!

                            xo Jen

                            snow white
                            Participant

                              Thank you Judy.  The best part is that Dad is very positive and doesn't feel he will have any problems, mind over matter!  I love hearing stories like your husbands, it give so much hope.  Wishing you the best!

                              xo Jen

                            Gene_S
                            Participant

                              While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

                              People react to medications differently and you can have a bad reaction to anything.

                              Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

                              Gene_S
                              Participant

                                While my husband was not on the combo so I can't help you there, have your Mom read my husbands journey on Ipi (Yervoy) as not everyone gets the bad side effects.  Yes he did have some side effects but they were mostly minor so don't go into treatment thinking you will get the bad side effects or worse yet die.  He was on the 10mg/kg doses which he took from Mar. 2011 to Dec. 2013 and he became NED in July 2012 so he will  celebrate 5 years NED this summer.

                                People react to medications differently and you can have a bad reaction to anything.

                                Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

                                cancersnewnormal
                                Participant

                                  The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

                                  All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

                                  I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

                                    snow white
                                    Participant

                                      yes, I believe they think if its not fungus it is possibly metastis, I will have to clarify that.  Thank you so much for posting so much info, this is all very confusing figuring out what drug is doing what and why! sheesh!  I think I understand it a bit better now.  They did the spinal tap today, so we should have some results in the next few days. I am so anxious about it and praying it doesn't show LMD.  The plan is to start Dad on the ipi on Monday if all goes well.  He is feeling very positive at this point which is really good.  I will update when we get results from infectious disease and from the spinal.  Have a great week!

                                      xo Jen

                                      snow white
                                      Participant

                                        yes, I believe they think if its not fungus it is possibly metastis, I will have to clarify that.  Thank you so much for posting so much info, this is all very confusing figuring out what drug is doing what and why! sheesh!  I think I understand it a bit better now.  They did the spinal tap today, so we should have some results in the next few days. I am so anxious about it and praying it doesn't show LMD.  The plan is to start Dad on the ipi on Monday if all goes well.  He is feeling very positive at this point which is really good.  I will update when we get results from infectious disease and from the spinal.  Have a great week!

                                        xo Jen

                                        snow white
                                        Participant

                                          yes, I believe they think if its not fungus it is possibly metastis, I will have to clarify that.  Thank you so much for posting so much info, this is all very confusing figuring out what drug is doing what and why! sheesh!  I think I understand it a bit better now.  They did the spinal tap today, so we should have some results in the next few days. I am so anxious about it and praying it doesn't show LMD.  The plan is to start Dad on the ipi on Monday if all goes well.  He is feeling very positive at this point which is really good.  I will update when we get results from infectious disease and from the spinal.  Have a great week!

                                          xo Jen

                                        cancersnewnormal
                                        Participant

                                          The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

                                          All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

                                          I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

                                          cancersnewnormal
                                          Participant

                                            The fungus test will be interesting… but if the doc doesn't think it's that.. did they give an alternative thought? Metastasis? "We just don't know"? Benign nodules? I suppose I'm most curious about their next best guess, because without lab results on anything, they really can't say.

                                            All of that aside…… I had to do Ipi and Pembro sequentially, because the combo was not an option yet… nor was Pembro or Opdivo as a single agent (outside of trials that I was ineligible for anyway). Ipi (anti CTLA-4) and the anti PD1 meds (Pembro and Obdivo) are essentially the "same", but target different pathways in the system… which is why their side effect profiles will differ. —http://journals.lww.com/amjclinicaloncology/Fulltext/2016/02000/CTLA_4_and_PD_1_Pathways__Similarities,.17.aspx —- "To prevent autoimmunity, numerous immune checkpoint pathways regulate activation of T cells at multiple steps during an immune response, a process called peripheral tolerance.1,2 Central to this process are the cytotoxic T-lymphocyte–associated antigen 4 (CTLA-4) and programmed death 1 (PD-1) immune checkpoint pathways.3 The CTLA-4 and PD-1 pathways are thought to operate at different stages of an immune response. CTLA-4 is considered the “leader” of the immune checkpoint inhibitors, as it stops potentially autoreactive T cells at the initial stage of naive T-cell activation, typically in lymph nodes.2,4 The PD-1 pathway regulates previously activated T cells at the later stages of an immune response, primarily in peripheral tissues."

                                            I had precious little side effects from Ipi (at the lower dose). It did knock my thyroid operation down a peg, but not like Pembro did! It also (seemingly) did very little to reduce or stabilize my tumors. Pembro side effects were equally minimal until I was 29 doses deep… but reduced my tumors to nothing in very little time. It's all soooo individual. As with any disease or chronic illness, doctors are only able to make their best educated guess as how to best proceed. Dr Hamid and his crew are some of the best informed in the melanoma field. It's always going to be a frightening step forward when new drugs are introduced, but with diligent monitoring, your dad will be ok.  : )

                                            Polymath
                                            Participant

                                              Hi Jen,

                                              Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

                                              Gary

                                                snow white
                                                Participant

                                                  Hi Gary, its nice to hear from you.  Dad will NOT be receiving Nivo at the same time as IPI.  I believe they feel that the 5 doses that he had is enough and they want to avoid toxicity of the combo.  She feels that getting started with the Yervoy asap is the most important at this point, I am assuming that we can revisit Opdivo in the future?  She said Dad is a complicated case because of some of the outside factors.  I will update as we get new info.  Take care.

                                                  Jen

                                                  snow white
                                                  Participant

                                                    Hi Gary, its nice to hear from you.  Dad will NOT be receiving Nivo at the same time as IPI.  I believe they feel that the 5 doses that he had is enough and they want to avoid toxicity of the combo.  She feels that getting started with the Yervoy asap is the most important at this point, I am assuming that we can revisit Opdivo in the future?  She said Dad is a complicated case because of some of the outside factors.  I will update as we get new info.  Take care.

                                                    Jen

                                                    snow white
                                                    Participant

                                                      Hi Gary, its nice to hear from you.  Dad will NOT be receiving Nivo at the same time as IPI.  I believe they feel that the 5 doses that he had is enough and they want to avoid toxicity of the combo.  She feels that getting started with the Yervoy asap is the most important at this point, I am assuming that we can revisit Opdivo in the future?  She said Dad is a complicated case because of some of the outside factors.  I will update as we get new info.  Take care.

                                                      Jen

                                                    Polymath
                                                    Participant

                                                      Hi Jen,

                                                      Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

                                                      Gary

                                                      Polymath
                                                      Participant

                                                        Hi Jen,

                                                        Good advice you are giving Mom.  Many of us have had few, if any side-effects from ipi or PD-1, or both.  Of course some do and treat them as they occur.  What I am not clear about is whether the new addition of ipi is being added to ongoing nivo?  I hope so, as the combo has proven to be the most effective therapy to date, and further research is pointing to doing ipi after the introduction of anti PD-1 has an even better result.  Hopefully the tests to come will reveal things are improving. Best in the battle.

                                                        Gary

                                                        Scooby123
                                                        Participant

                                                          Hi Hun,

                                                          i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

                                                          love to you all

                                                          scooby

                                                          x

                                                          Scooby123
                                                          Participant

                                                            Hi Hun,

                                                            i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

                                                            love to you all

                                                            scooby

                                                            x

                                                            Scooby123
                                                            Participant

                                                              Hi Hun,

                                                              i did ippi 4 doses had itchy rash and constipation with it . Thyroid went down but came back to normal after 6 months. Glad you got a plan.

                                                              love to you all

                                                              scooby

                                                              x

                                                                snow white
                                                                Participant

                                                                  Thank you Scooby.  I appreciate you sharing your experience ๐Ÿ™‚

                                                                  xo Jen

                                                                  snow white
                                                                  Participant

                                                                    Thank you Scooby.  I appreciate you sharing your experience ๐Ÿ™‚

                                                                    xo Jen

                                                                    snow white
                                                                    Participant

                                                                      Thank you Scooby.  I appreciate you sharing your experience ๐Ÿ™‚

                                                                      xo Jen

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