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Possibly sudden heart trouble – nivo reaction?
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Possibly sudden heart trouble – nivo reaction?

› Forums › General Melanoma Community › Possibly sudden heart trouble – nivo reaction?

  • Post
    • March 9, 2018 at 5:06 pm
    sister of patient
    Participant

      Hi folks,

      My sister Leisa has been having chest pain for a couple of months (just admitted this, grrr!!!) and her "nivo fatigue" became much worse at the same time, even though still on steroids.

      All scans are clear, she's still NED.

      Onc has ordered an echocardiogram for Monday, so she is "on it" at least. If anyone has had any kind of cardiotoxicity as a result of nivo infusions, I'd be interested in hearing about it – symptoms and treatments. I've already got great info from Celeste's blog, it's the personal experience I'd like to hear more about.

      I'll update this post too as we learn more, in case it's of benefit to anyone else. Have an excellent Friday everyone!

      Barb

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    • Replies
        • March 9, 2018 at 7:18 pm
        jennunicorn
        Participant

          Myocarditis is a side effect of Nivo, I had an echo done before starting Ipi/Nivo so I had a baseline report in case any cardiac symptoms arose. I hope they figure it out and she can start feeling better soon. 

            • March 10, 2018 at 3:05 am
            sister of patient
            Participant

              Hi Jenn – Yes, she had the baseline echo too at the start of treatment (2 years ago) and all was good then. I hope they figure it out too. Thanks for your good thoughts! 🙂

              Barb

            • March 9, 2018 at 7:52 pm
            ed williams
            Participant

              Hi Barb, I thought I was last year, went through Heart Mri, stress test and echocardiogram( which is really cool by the way) turns out my acid reflux that I developed from taking Nivo needed to be kept in better check. I hate taking the pills so I was not following Dr. orders exactly. Since then, I have been taking the meds regularly and things have settled down, still have real issues if I eat a big meal or lie down flat. Hope it turns out to be nothing!!!Ed 

                • March 10, 2018 at 3:30 am
                sister of patient
                Participant

                  Hey Ed – Thanks for your response and good thoughts. I was talking to her earlier tonight (infusion today) so I asked her about possible reflux problems but she said she knew what that felt like and this new pain was different. It was in her left shoulder and radiated down and thru her armpit and midway across her chest. That, combined with the extreme fatigue and (just told me) shortness of breath too makes me worry about myocarditis. I guess we'll find out. Thanks again and take care.

                  Barb

                • March 9, 2018 at 8:22 pm
                AZSoCal
                Participant

                  I had cardiac side effects on a combo of Nivo/Ipi. It was caught early but they had to remove me from the drugs after just 4 treatments — one Nivo/Ipi combo and three Nivo only treatments — due to the risks of continuing treatments.

                  This is a really rare side effect (~0.28% of patients) so its not often monitored directly, and most specialty clinics/doctors won't have seen it very often, if at all. Mine was indirectly diagnosed (asymptomatic) through elevated CK levels that eventually lead them to test my Troponin.

                  Good news is, It should be easily corrected through 2-3 weeks of steroids with no lasting effects. Just make sure they have tested her Troponin levels.

                  Good luck!!

                    • March 10, 2018 at 3:17 pm
                    sister of patient
                    Participant

                      Thanks very much AZSoCal. She's going to inquire about a check of Troponin levels, for sure. It sounds like you were very lucky!! Hope you're doing well now!!

                      Barb

                    • March 10, 2018 at 3:26 am
                    GeoTony
                    Participant

                      I had the echocardiogram at baseline, no issues, then 2 doses of Ipi/nivo, reacted, stopped treatment, prednisone for 6 weeks, then another duel dose followed by a single nivo and a heart attack. They couldn't link it to the treatment, they repeated the echocardiogram looked fine, however the angioplasty revealed a couple of furry arteries so they stented me, blamed my cholesterol level of 5.2, just out by 0.2, I suspect the overall stress at the time was a big contributing factor, also while on prednisone I went from heavily fatigued to literally overnight running round like the Duracell bunny, then back to mildly fatigued when the Ipi/nivo restarted, a lot of strain on the system. 

                      I'm still here, still smiling, having taken up yoga, recommended by the cardio rehab unit, less stressed, the nivo maintenance is very straightforward, 26 down, 26 to go, minimal side effects, sad to say it's become routine, a pain in the proverbial, but I'll take stable over progressing any day. Also my heart has been serviced and is now fit to run for another 50 years, just have to avoid the bacon butties…..

                        • March 10, 2018 at 4:18 pm
                        sister of patient
                        Participant

                          Wow Tony, you really had a rough time but I hope you're feeling great these days (no bacon butties is a shame but understandable 🙂 and, at a halfway point in treatment then, here's hoping you're more than "stable" when you're finished. Your story is a bit scary, in that your echocardiogram was good and they didn't link your heart trouble to treatment but, like anything else, I suppose it can manifest whenever it's ready to, if it's going to happen. We do have a bit of a family history in our parents, so, it would not be a surprise even without nivo complications.

                          Her biggest worry (I know this for a fact) is being taken off treatment. I don't think ending treatment is a bad thing but I'm not the one with mel – it seems to me though that she's getting a number of reactions that are all inflamation-related (uveitis comes and goes, suspected pneumonitis at xmas) and I wonder if she's reaching a level of "nivo toxicity" where it's now doing more harm than good.

                          Steroids are already a problem for her too – she's at max dexameth while on infusions (1.5 mg) and has been for more than 2 years – they have made her skin so thin that it splits open if only just bumped – everything makes a bloody, red bruise >> even just taking off a bandaid. So, interrupting  treatment and having a higher dose of steroids for a while is going to do her (skin) more harm.

                          Thanks very much for relaying your experience and, in addition to 50 years of good heart health, I wish you many years of great health, period!!!!

                          Barb

                          • March 11, 2018 at 7:35 pm
                          GeoTony
                          Participant

                            Thanks Barb

                            I went through pneumonitis and pruritus, hence the pendersone, my heart attack was only detected through the Troponin, everything else, BP, ECG, all clear so I'd insist on that blood test, it's good for up to 10 days after the attack if memory serves correctly. Unfortunately I'm now on an anti-clotting medication, plavex, which means I bruise and bleed easily, which could be an issue for your sister. Wish her the best and let's keep up the fight.

                            Tony

                             

                            • March 11, 2018 at 9:31 pm
                            sister of patient
                            Participant

                              Thanks very much Tony! AZSoCal advised of troponin levels too, so it's on my list of questions!!! Thank you for the best wishes as well – she IS a fighter, for sure!!!! 🙂 Take care!

                              Barb

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