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Mets to lung
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Mets to lung

› Forums › General Melanoma Community › Mets to lung

  • Post
    • December 22, 2020 at 11:50 pm
    KrossCanada
    Participant
      Hello

      I am new here and it’s been so helpful reading previous posts. I am 40 years old and a mother to 4 and 7 year old daughters. I was diagnosed stage 3 melanoma in 2016, breast cancer in 2018 and now melanoma spread to my lung. I had my first ipi/nivo combo yesterday. I’m feeling pretty overwhelmed and wondering how others dealt with the side effects, and did you complete the four treatments? The uncertainty and not knowing when or if I will have side effects is really hard. I had chemo for BC which was brutal but I felt like I knew what to expect then.
      What was your experience? Any advice?

      thank you!
      kristin

    Viewing 7 reply threads
    • Replies
        • December 23, 2020 at 3:17 pm
        Bubbles
        Participant
          Third time, trying to give you some meaningful info, Kristin.  Obviously with no success thus far on our new and improved MPIP.  Will see if this will post and try to repost other info later.  Just wanted you to know (if possible) that you ARE being heard and seen.  celeste
            • January 1, 2021 at 8:33 pm
            JudiAU
            Participant
              I have wild ride with a brain tumor in between getting my melanoma removed and metastatic disease. It feels really unfair to deal with multiple serious issues. It is hard to predict how you will fair with immunotherapy. I tolerate it pretty well. I had a break between combo 2 and 3 because I was hospitalized for a week for a very high fever. They removed a brain met at that time. And within two weeks I was back to immunotherapy and did radiation at the same time. Finished four. Almost done with twelve doses. I have scans coming up. I do get some mild diarrhea  but easily controlled  and nothing like the bad version some people get. I started taking a steroid during the fever and that makes me gain weight etc which I hate  but I am slowly, slowly tapering down

               

              the best advice is just take it day by day and understand side effects so you identify them and have them treated before they get worse and you loose access to drugs  . My experience certainly has been less awful with chemo. I do have a lot of health issues now but they relate to brain surgery 3X

              Your age will

            • December 23, 2020 at 6:16 pm
            Bubbles
            Participant
              Trying to give this a go once more.  Originally the links were functional.  We’ll see if this works…

              Hi Kristin,

              So sorry you have the need to be here!!  Sounds like you have already had more than your fair share of crappola!!!  Side effects to the ipi/nivo combo really vary person to person.  All immunotherapy (ipi {Yervoy}, nivo {Opdivo}, and pembro {Keytruda]) almost universally cause some degree of fatigue, itchy skin rashes, joint pain.  More serious side effects like wheezing and diarrhea also occur, but even there – the extent to which they occur varies – but as they can lead to pneumonitis and colitis, report them to your doc ASAP if you show any signs. Additional side effects are also possible.  So – like all the crazy that is melanoma – it is unpredictable and it is best to discuss any issues with your doc should they occur.  Here is a review of current treatments that may help you –

              https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

              We have learned that ipi is the bad boy of side effects, alone and certainly when combined with anti-PD-1.  However, that very combo is the best treatment we have going in melanoma so I am glad you are getting it!  Whether folks complete all the ipi/nivo doses is a bit of a crap shoot, but I think this data is very comforting:

              https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html

              The import of the data is in the title:  40% of melanoma patients stop ipi/nivo due to side effects…BUT…efficacy is about the same!!!

              We have oddly similar histories.  I was diagnosed with Stage 3b melanoma in 2003 with a 10 and 12 year old.  Progressed to stage 4 in 2010 with brain and lung mets.  Joined a phase 1 nivo trial (ipi/nivo wasn’t a thing!  HA!) 6 months after that diagnosis.  My last dose was in 2013 and I have remained NED for melanoma with no further treatment for it ever since.   HOWEVER – I did manage to have Stage 2 ex-goblet cell adenocarcinoma of the appendix that necessitated the removal of a great deal of my innards in 2018.  I did CAPOX for 4 rounds after that surgery.  (Capecitabine and oxaliplatin).  It is hard for me to say which poison I’d pick – cause they all SUCK!!!  Oh well.  I am still here!!!

              Hopefully, you will have gotten rid of all the crappy cancer you are going to have to deal with very soon.  Yell, question, rant – whatever you need as things come up.  There are many smart caring peeps here.  Take good care.  Hug your girls.  I wish you my best.  celeste

              • December 23, 2020 at 6:16 pm
              Bubbles
              Participant
                Hi Kristin,

                So sorry you have the need to be here!!  Sounds like you have already had more than your fair share of crappola!!!  Side effects to the ipi/nivo combo really vary person to person.  All immunotherapy (ipi {Yervoy}, nivo {Opdivo}, and pembro {Keytruda]) almost universally cause some degree of fatigue, itchy skin rashes, joint pain.  More serious side effects like wheezing and diarrhea also occur, but even there – the extent to which they occur varies – but as they can lead to pneumonitis and colitis, report them to your doc ASAP if you show any signs. Additional side effects are also possible.  So – like all the crazy that is melanoma – it is unpredictable and it is best to discuss any issues with your doc should they occur.  Here is a review of current treatments that may help you –

                We have learned that ipi is the bad boy of side effects, alone and certainly when combined with anti-PD-1.  However, that very combo is the best treatment we have going in melanoma so I am glad you are getting it!  Whether folks complete all the ipi/nivo doses is a bit of a crap shoot, but I think this data is very comforting:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html  The import of the data is in the title:
                <h3 class=”post-title entry-title”>40% of melanoma patients stop ipi/nivo due to side effects…BUT…efficacy is about the same!!!</h3>

                We have oddly similar histories.  I was diagnosed with Stage 3b melanoma in 2003 with a 10 and 12 year old.  Progressed to stage 4 in 2010 with brain and lung mets.  Joined a phase 1 nivo trial (ipi/nivo wasn’t a thing!  HA!) 6 months after that diagnosis.  My last dose was in 2013 and I have remained NED for melanoma with no further treatment for it ever since.   HOWEVER – I did manage to have Stage 2 ex-goblet cell adenocarcinoma of the appendix that necessitated the removal of a great deal of my innards in 2018.  I did CAPOX for 4 rounds after that surgery.  (<i>Capecitabine and oxaliplatin).  </i>It is hard for me to say which poison I’d pick – cause they all SUCK!!!  Oh well.  I am still here!!!
                Hopefully, you will have gotten rid of all the crappy cancer you are going to have to deal with very soon.  Yell, question, rant – whatever you need as things come up.  There are many smart caring peeps here.  Take good care.  Hug your girls.  I wish you my best.  celeste

                 

                • December 23, 2020 at 6:16 pm
                Bubbles
                Participant
                  Gonna try this again.  Originally I had links that actually worked linked here.  But, it didn’t post.  So, I will try it this way.  Geeeeze, spammers can post but legit folks cannot.  Sorry for the rant – here we go -AGAIN!!!!

                  Hi Kristin,

                  So sorry you have the need to be here!!  Sounds like you have already had more than your fair share of crappola!!!  Side effects to the ipi/nivo combo really vary person to person.  All immunotherapy (ipi {Yervoy}, nivo {Opdivo}, and pembro {Keytruda]) almost universally cause some degree of fatigue, itchy skin rashes, joint pain.  More serious side effects like wheezing and diarrhea also occur, but even there – the extent to which they occur varies – but as they can lead to pneumonitis and colitis, report them to your doc ASAP if you show any signs. Additional side effects are also possible.  So – like all the crazy that is melanoma – it is unpredictable and it is best to discuss any issues with your doc should they occur.  Here is a review of current treatments that may help you –

                  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

                  We have learned that ipi is the bad boy of side effects, alone and certainly when combined with anti-PD-1.  However, that very combo is the best treatment we have going in melanoma so I am glad you are getting it!  Whether folks complete all the ipi/nivo doses is a bit of a crap shoot, but I think this data is very comforting:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html  The import of the data is in the title:

                  40% of melanoma patients stop ipi/nivo due to side effects…BUT…efficacy is about the same!!!

                  We have oddly similar histories.  I was diagnosed with Stage 3b melanoma in 2003 with a 10 and 12 year old.  Progressed to stage 4 in 2010 with brain and lung mets.  Joined a phase 1 nivo trial (ipi/nivo wasn’t a thing!  HA!) 6 months after that diagnosis.  My last dose was in 2013 and I have remained NED for melanoma with no further treatment for it ever since.   HOWEVER – I did manage to have Stage 2 ex-goblet cell adenocarcinoma of the appendix that necessitated the removal of a great deal of my innards in 2018.  I did CAPOX for 4 rounds after that surgery.  (Capecitabine and oxaliplatin).  It is hard for me to say which poison I’d pick – cause they all SUCK!!!  Oh well.  I am still here!!!

                  Hopefully, you will have gotten rid of all the crappy cancer you are going to have to deal with very soon.  Yell, question, rant – whatever you need as things come up.  There are many smart caring peeps here.  Take good care.  Hug your girls.  I wish you my best.  celeste

                  • December 23, 2020 at 6:16 pm
                  Bubbles
                  Participant
                    Hi Kristin,

                    So sorry you have the need to be here!!  Sounds like you have already had more than your fair share of crappola!!!  Side effects to the ipi/nivo combo really vary person to person.  All immunotherapy (ipi {Yervoy}, nivo {Opdivo}, and pembro {Keytruda]) almost universally cause some degree of fatigue, itchy skin rashes, joint pain.  More serious side effects like wheezing and diarrhea also occur, but even there – the extent to which they occur varies – but as they can lead to pneumonitis and colitis, report them to your doc ASAP if you show any signs. Additional side effects are also possible.  So – like all the crazy that is melanoma – it is unpredictable and it is best to discuss any issues with your doc should they occur.  Here is a review of current treatments that may help you – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

                    We have learned that ipi is the bad boy of side effects, alone and certainly when combined with anti-PD-1.  However, that very combo is the best treatment we have going in melanoma so I am glad you are getting it!  Whether folks complete all the ipi/nivo doses is a bit of a crap shoot, but I think this data is very comforting:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html  The import of the data is in the title:
                    <h3 class=”post-title entry-title”>40% of melanoma patients stop ipi/nivo due to side effects…BUT…efficacy is about the same!!!</h3>

                    We have oddly similar histories.  I was diagnosed with Stage 3b melanoma in 2003 with a 10 and 12 year old.  Progressed to stage 4 in 2010 with brain and lung mets.  Joined a phase 1 nivo trial (ipi/nivo wasn’t a thing!  HA!) 6 months after that diagnosis.  My last dose was in 2013 and I have remained NED for melanoma with no further treatment for it ever since.   HOWEVER – I did manage to have Stage 2 ex-goblet cell adenocarcinoma of the appendix that necessitated the removal of a great deal of my innards in 2018.  I did CAPOX for 4 rounds after that surgery.  (<i>Capecitabine and oxaliplatin).  </i>It is hard for me to say which poison I’d pick – cause they all SUCK!!!  Oh well.  I am still here!!!
                    Hopefully, you will have gotten rid of all the crappy cancer you are going to have to deal with very soon.  Yell, question, rant – whatever you need as things come up.  There are many smart caring peeps here.  Take good care.  Hug your girls.  I wish you my best.  celeste

                     

                    • December 23, 2020 at 6:20 pm
                    Bubbles
                    Participant
                      Well, looks like all attempts posted at once!  We’ll call it progress.  Sorry for the replication peeps.  c
                      • January 4, 2021 at 11:23 am
                      hxcadam
                      Participant
                        Hi Kristin,

                        I too was diagnosed Stage 3(c) in 2016.  Back then I got 2 rounds of Ipi after the WLE/Lymphectomy.  I recurred in January of 2020 (2 small lung mets, 2 small brain mets and 1 on spleen).  I received radiation to all sites in combination with starting Opdivo.  The Lung/Brain mets seemed to have responded well to that combination but later scans showed further progression to new sites and the spleen grew very large.  I was put on BRAF inhibitors which seems to have gotten all of the new sites under control while still seeing further response to the original sites.  You may want to ask about adding radiation while also getting the immunotherapy.

                        • January 4, 2021 at 7:26 pm
                        KrossCanada
                        Participant
                          Thank you for the responses. It’s two weeks today since my first combo treatment and I’ve been feeling okay. I had a rash, extreme fatigue and just feeling extra crappy today. It’s definitely day by day. ???? Thank you
                      Viewing 7 reply threads
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