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Going into Ipi/Nivo treatment
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Going into Ipi/Nivo treatment

› Forums › General Melanoma Community › Going into Ipi/Nivo treatment

  • Post
    • August 23, 2018 at 9:24 am
    Schiavonne
    Participant

      Hi there, this is my first time posting. My Dad was diagnosed with Stage 3 melanoma, with the cancer in a few lymph nodes, two years ago. He progresses to Stage 4 towards the end of the year with a spread to more lymph nodes. He has been through four attempts at Immunotherapy already, none of which has stopped progress: a trial of Ipi while still stage 3, then Keytruda after progress which did not stop the cancer, then a trial with immunotherapy plus a MEK Inhibitor (that one really knocked him around), then most recently a trial with Nivolumab and an anti-Lag-3. He only had one infusion of the latter, before recently being hospitalised with complications from the cancer which is spreading quite rapidly in his lymph nodes. 

      I am trying to be positive that the Ipi/Nivo combo, which he starts next week, still has a chance of working. The four other treatments have really been a rollercoaster of emotions as we let ourselves hope at the beginning and then have the hopes dashed. I admit to being confused by much of what the doctors are deciding to do – they seem to abandon treatments very quickly if there's the slightest hint of progression, even if he's only had one or two infusions of them. His progression seemed considerably slower while he was on Keytruda and has become more agressive since he came off – I know if could just be the natural cycle of the cancer but I have a theory that the Keytruda may have been slowing things down if not stopping them. But who knows. 

      At present my main concern is to prepare ourselves for the side effects of the Ipi/Nivo combo. I know it can be harsh, and he is weak at the moment from the side effects of the tumors (nausea, pain, fluid build up, he's not eating and he's very tired all the time). Do people have recommendations for how to minimise the side effects of the combo treatment? Also, I have read that radiation in combination with Ipi/Nivo can work better – the doctors have not proposed this but maybe I should bring it up? 

      Also, our understanding is the Ipi/Nivo is the last thing we can try. But are there any 'hail Mary' options out there if this one doesn't work? I'm just trying to stay positive and telling myself that as long as there are things to try, all is not lost

      Thanks

    Viewing 6 reply threads
    • Replies
        • August 23, 2018 at 3:33 pm
        adrianc
        Participant

          Sorry that you and your dad are dealing with this.Have your father tumors been tested for gene mutations?Ipi/Nivo side effecte vary from one patient to another.The common side effects that had been reported  are fatigue, skin rashes, muscle weekness/joint pain, flu like sympomps. Then others  more serious conditions like colitis , nausea, tyrhoid ,pituary and adrenaline glands dysfuncion can happen in some patients.Some patients have  mild symptomps , some more intense, some had adverse reaction,its very individual.Wishing your dad good luck with the treatment and keeps us posted

            • August 24, 2018 at 9:46 am
            Schiavonne
            Participant

              Thank you for the advice on the side effects. I believe he's been checked for gene mutations and he's not BRAF Positive unfortunately, as my understanding is there's be more options then. 

            • August 23, 2018 at 4:57 pm
            MelanomaMike
            Participant
              Hello Schiavonne, my heart & prayers are with your Dad (and you to!) During the fight, i to am taking Opdivo/Yervoy i just completed #4 of the Yervoy part of it (mostly given 4 times only) then continue the Opdivo till further notice, ive read great findings & actual stories of folks who have responded so well to this “recipe” this Combonation therapy, (ipi/nivo) so im hopefull.. i to started my immunal med journey with Keytruda but, after 7 bags of it, it wasnt cuttin it, so, we stopped. My tumors are in my lungs so, im REALLY hoping this knocks it out soon or atleast slows its growth so i can stick around a bit longer, cuz im not done with a few things in life…Be well…Mike PS: Side effects where minimal for me, after 1st infusion about 6 days in, i suffered severe vomiting, headaches, no appitite for over a week then it stopped abruptly…then, Pituitary problems, Arthritis in knees, and thats it so far! Easy breasy!…
                • August 24, 2018 at 9:47 am
                Schiavonne
                Participant

                  Thank you so much for your response – I hope my Dad's side effects are also easy breezy (though severe vomiting doesn't sound good!) 

                • August 23, 2018 at 11:17 pm
                Bubbles
                Participant

                  There's a lot there and I am sorry for what you and your dad have been dealing with.

                  1.  Keytruda (pembrolizumab) is basically the same as Opdivo (nivolumab)….both are anti-PD-1 products with similar results and side effects.

                  2.  The ipi/nivo combo has the highest rates of success currently.

                  3.  Here is a primer that may (or may not) give you more information regarding basic treatment for melanoma:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

                  4. Yes.  When radiation is combined with immunotherapy, results are better than when either treatment is used alone.  Here are zillion reports:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

                  5.  There are other trials/treatments in the works.  Here is a great review posted by my dear Edster:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/future-dr-hamid-la#comment-117708  

                  Hope this helps.  I wish you and your dad my best.  Celeste

                    • August 24, 2018 at 9:49 am
                    Schiavonne
                    Participant

                      Thank you so much for this. I've checked the links you sent and they are very helpful, especially the ones about radiation and immunotherapy. I might try to show them to the doctors! 

                    • August 24, 2018 at 12:05 am
                    AZSoCal
                    Participant

                      Very sorry to hear about your father!

                      I'm no expert but if I recall correctly tests can still show an increase in the cancer until you've completed several treatments. I would need to refresh my memory to state that with any real confidence so take that statement for what its worth (very little). You might want to seek out a second opinion on the subject in parallel with his existing treatments.

                      That said, looking exclusively at immunotherapy treatments, a combination of Ipi & Nivo should give him the best chance at a full or partial response — greater than just Pembro (Keytruda) or Nivo (Opdivo) alone. Assuming he doesn't have any side effects, there is no need to switch back to just Keytruda if he shows a response to these drugs.

                      There is a greater chance of side effects on a combo of drugs. The list above was pretty extensive but you should also be concious of heart inflamation. It's incredibly rare (<1% of patients) but one of the more dangerous side effects. 

                      They typically run a CK blood test to measure inflamation in the body, but a CK-MB will specifically test for cardiac inflamation. Most accurate is to test his Troponin levels, which is what they use to determine if someone has had a heart attack.

                      They won't need to test these blood markers continuously but it should be tested in the beginning. I started seeing increased levels of Troponin after just 3 infusions and only 1 combo dose, and was removed from the trial.

                      NOTE: Some inflamation is good. It could mean the drugs are working. Don't take a high CK reading as bad news along; it needs to be combined with Troponin to really be accurate.

                      There does seem to be a massive difference in the quality of care from a hospital system that specialize in melanoma vs hospital systems with a broader oncology focus. You may want to seek out other referrals for melanoma experts in your area.

                      What hospital system are you using? 

                        • August 24, 2018 at 9:50 am
                        Schiavonne
                        Participant

                          Thank you so much for your comments. We're in Australia, so there are meant to be good melanoma specialists here (for unfortunate reasons!) Dad's team is a specialist melanoma team, although he has switched doctors as well. That's very helpful re the inflammation and watching out for the heart, I will bring that up as well

                        • August 24, 2018 at 1:22 am
                        Ridingaroundwith27Jennifers
                        Participant

                          Sorry to hear what you are going through.  This is a tough journey so try to stay strong.  I'm no expert but it seems everyone reacts differently to the ipi/nivo combo.  The side effects for me were very mild after the first infusion.  I was OK for about 10 days after the second infusion but then I had hepatitis and went off treatment.  The good news is that the treatment worked amazingly well for me.  I had some progression while off treatment and then some other issues but it wasn't from the treatment.  

                          I was very apprehensive during most of my treatment.  I'm a bit calmer now but it's been two years and currently I'm doing well.  Try to keep positive and follow your gut.  My husband was a great support for me when I was at my worst.  He helped ensure I didn't minimize my side effects and that was important for ensuring I got the treatment I needed.  

                          I wish you both well and hope you have success with the ipi/nivo combo.  

                          Jennifer

                            • August 24, 2018 at 9:52 am
                            Schiavonne
                            Participant

                              Thank you for your advice – I hope the treatment works as well for my Dad! Trying to stay positive is very important. Fingers crossed 

                            • August 24, 2018 at 4:58 am
                            Sharon93065
                            Participant

                              i wish the opdivo/yervoy was started first.  The combo treatment is the start before the Opdivo maintenance.

                              My side effects were thyroid, rash/hives (buy ezcema cream with colidal oatmeal) i took allerest in the am for the rashes.  Also after 3rd treatment developed toxic liver, hepatits D. Stopped treatment  and was put on prednisone, then on opdivo.  My latest petscan showed no more metastatic tumors.  One thing to remember, ask questions on the forum, everyones experience is what helped me get thru it.  And the combo stuff is still working in you even if treatment is stopped.  It's slow but sure.  God Bless you.

                              I have the joint pain and some fatigue, but much better now that brain fog has cleared up.

                              Sharon 

                                • August 24, 2018 at 9:53 am
                                Schiavonne
                                Participant

                                  Thank you – great to hear the treatment has worked for you! It is unfortunate about the side effects but it sounds like you're much better now. I'll make sure the doctors watch liver especially as Dad's had trouble with that before

                                • August 24, 2018 at 11:49 pm
                                Mat
                                Participant

                                  Sorry to hear about your dad's challenges.  For what it's worth, I failed ipi and then Keytruda prior to ipi-nivo (with BRAF-MEK to start and in between).  I've been stable on ipi-nivo since 2016.  So, it is possible to have success with ipi-nivo after progressing on other immunotherapy attempts.

                                    • August 26, 2018 at 12:46 pm
                                    Schiavonne
                                    Participant

                                      Thank you for your thoughts. It gives me hope that he may stillhave success with the ipi-nivo even though he failed Keytruda and ipi alone. I hope your success continues!

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