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Opdivo causing inflammation

Forums General Melanoma Community Opdivo causing inflammation

  • Post
    RhondaF
    Participant
      My husband has been taking Opdivo since Sept, 2020 and done pretty well until the past month.  He started going downhill with fatigue, eating, muscles hurting. Then the past 2 weeks he got particularly worse with eating and vomiting a couple of times, then on Monday, June 14, he felt chest pain when he would breathe. He had an Opdivo scheduled, but we went to ER instead. They tried to treat him like a heart attack patient, but he didn’t respond to that. By Tuesday morning, his blood pressure was dangerously low and they found fluid around his heart. Sent to Cath Lab to drain then to ICU. They thought he had an infection in his body somewhere so antibiotics. I told them I thought it was a reaction to Opdivo first off.  Along the way, they were finding it wasn’t an infection, but possibly inflammation from the immunotherapy. My husband has been so ill, he hardly knew who I was. I think they are on the right track, but he has had random times of talking about things totally unrelated to the subject and today he was combative with the nurse and me when she wanted to add a new line to replace an old one. He would not let her do it. He was talking about things I had no idea of and would not let them start the IVs.  His right arm starting shaking.  The nurse had no idea what was causing this.  Visiting hours were over and I had to leave. I hated leaving with him in that shape. He refused to eat supper. He talked back to me and this is not his personality at all, but yet he could answer questions as to who he is, DOB, etc.  One note, his oncologist strongly suggested 70-100 mg Prenidsone, but the attending doctor hasn’t done this. He started 20 mg. I’m concerned that there is a breakdown here.  So mu question is has anyone else had such severe life-threatening toxicity such as this from Opdivo and how was it treated?  I’m afraid my husband may have permanent damage.  I’m beside myself seeing him this way. I won’t go into how I have been not happy with his oncologist not really hearing how badly my husband had been doing the past few weeks.
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    • Replies
        Mark_DC
        Participant
          Dear Rhonda

          I am sorry for what has happened to your husband and also to you. Also I am not an expert so I cannot really help you too much (sorry). Opdivo side effects are less common than for ipi, but clearly they can happen. What concerns me is that the ER people need to know that your husband is on immunotherapy and that this most likely is the cause. Prednisone i think is often prescibed and probably at a high dosage in your husband;s case (20mg seems low but I am not a doctor). Your oncologist should be a melanoma specialist and helping guide this ER treatment. I know that when i was on ipi and pembro i had to alert my oncologist to possible side effects and then they would be involved in treatment. So please make sure s/he is involved. I dont see why the attending physician would be less aggresive in treatment than your oncologist. And I would hope they would be at the same hospital and coordinating and taking a common view and responsibility.

          I hope others more knowledgeable will write in and help

          i hope your husband recovers from these effects soon

          Best wishes Mark

            RhondaF
            Participant
              Dear Mark,

              Thank you for your kind words.  My husband tried to tell them he was on immunotherapy, but I couldn’t get back there where he was. Now I know that I should have insisted.  I did tell a doctor that came out to talk to me while I waited at the ER that I thought it was the immunotherapy and he seemed to understand.  But the symptoms were leaning toward an infection in his body with a fever and such.  The oncologist didn’t seem to really ‘hear’ our concerns when we had our biweekly appointments.  I can’t understand why he couldn’t just look at my husband and see the change, but….   Again, I should have been a better advocate.  The good news is my husband is better today.  I did not have any episodes of confusion or being agitated. He eat good and drank water. I understand he gave the morning nursing staff some issues, but not as severe as the night before.  Truly, he was ready to go home.  So he may get to go home tomorrow!! Yayyy… Depending upon Physical Therapy as to whether he can manage with help and PT at home for a couple of weeks.  Today was the difference in daylight and dark from last night.  The oncologist is on staff at the hospital and he did stop in to see my husband a few times, but I never saw him.   I do not understand why the doctor assigned to him didn’t do as suggested with the Prednisone.  I am assuming they talked….  So, it’s looking much better today!

              Rhonda

            guynamedbilly
            Participant
              Wow that would be a scary response.  Never heard of one that extreme to Nivo.  I assume they will be holding off on treatments for a while, but hopefully the Doctor looks into what caused it more.  Good luck.
                RhondaF
                Participant

                  The oncologist will stop treatments. We don’t have a melanoma specialist here in Hawaii that I know of. I checked the site for the closest and it looks the mainland would be our closest option.

                  It has been so scary and not over yet. Whether it’s from the shock my husband was experiencing with low blood pressure and inflammation, he has been periods of confusion. The doctor is a man of few words. When he was giving me updated during the week, all he would say is that it’s serious. I’m like okay, what do you mean? But never got any more out of him.

                Mark_DC
                Participant
                  Hi Rhonda, am glad the news is much better. I hope too your husband will have a chance to go back on treatment (or some other treatment) once things normalize (although he would then need to be watched carefully). Have you checked the posts of polymath – he used to post lots long ago, he’s now fine and he lives in Hawaii. His treatment may well have been on the mainland though, not sure. He only stops by very occasionally these days but maybe you can find his posts and send him a message and he may be able to help.

                  good luck Mark

                    RhondaF
                    Participant
                      Thank you Mark! I found his profile and commented on a thread he had. It’s good to see how well he’s doing even though still dealing with the effects.
                    caman
                    Participant
                      Rhonda, did your husband get a Covid shot?  I’m asking because I was on immunotherapy as well and 10 days after being vaccinated,  this is what occurred

                      Aortic dissection,  Hypothyroidism,  Pancreatitis (likely due to clot),  Colitis,  Vitiligo,  Rashes, Allergies.   This is after being side effect free for 10 months while on immunotherapy, aside being tired.  My body reacted big time, scan indicated new inflammations, including prostrate,  that were never there before.  I’m just beginning to recover to my old self.   Coincidence?

                      But I’m NED,  so I’m grateful

                       

                       

                        RhondaF
                        Participant
                          Caman,

                          No, we neither one got the covid shot. We didn’t believe it to be in our best interest.

                          I’m so sorry for the bad reactions you’ve had especially after being free from issues taking the treatments.

                          Praying you’ll get thru this and return to better health.

                          My husband’s Dr wanted him to get the shot, but he said no. They had a strong discussion about it and the Dr left in a huff.

                          Rhonda

                        Bubbles
                        Participant
                          So sorry for what you and your husband are dealing with, Rhonda.  But ever so glad he is getting better.  Side effects to immunotherapy follow a huge range of types and degrees of seriousness.  Here is a post I put up a long time ago that kind of explains WHY we get them:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                          Here are a zillion posts on side effects to immunotherapy – many with links to other posts within:

                          First set:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/this-stuff-is-still-weird-side-effects.html

                          Second set:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=side+effects+to+immunotherapy

                          Bottom line ~ an oncologist familiar with melanoma and melanoma treatments and one who will COMMUNICATE with the patient and family is essential.  Literally the difference between life and death.  I hope you can find one who is much more suited to your husband’s needs!  Essentially, all significant side effects are treated with steroids and a break from immunotherapy.  It doesn’t mean that immunotherapy cannot be restarted – it often can – but the patient needs a break to recover.  There are published algorithms for dealing with categories of immunotherapy side effects – This link shows the algorithm for neuro effects and links to those for liver, gastro, lung, and endocrine effects:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/neurologic-side-effects-to.html  

                          I hope your husband continues to improve and you can find a physician better suited to care for him.  This board is filled with smart caring peeps.  Ask more questions as you have the need.  I wish you and your husband my best.  Celeste

                            RhondaF
                            Participant
                              Thank you so much Celeste! I’ll check out the links and try to see if there is another oncologist on Maui. We are not like on the mainland with numerous specialty doctors. We are lucky if we have 1.

                              Rhonda

                              RhondaF
                              Participant
                                Hi Celeste, Your links are a wealth of information – didn’t read everything, but gained more understanding.

                                My husband is gradually gaining strength and been working out in the mornings and wet go walking after dinner. He is eating very well. My only concern is that he is still losing weight. He’s lost 15 lbs since he came home from the hospital. Amount a lb power day. But eating very well. My thought was maybe he is now hyperthyroid rather than hypothyroid. He had not had any blood tests, but next week we will have blood test for T3, T4, TSH.

                                We also found out we’ll have a 3rd oncologist in less than a year. I’ve contacted or dermatologist to see who she recommends in Hawaii as well as in CA that is a melanoma specialist. I think I’ll try to connect with both of them.

                                He’s still being seen by a cardiologist to make sure fluid isn’t building around his heart – so far none. Just praying he will recover from this crisis and we can find another treatment plan for him.

                                Rhonda

                              RhondaF
                              Participant
                                I’m not sure what is going on with this forum, but I just lost my 2nd post on this thread and it was long. I should have saved it, but I didn’t.  I am writing this to see if it will actually post.

                                Rhonda

                                  ed williams
                                  Participant
                                    Same thing happened to me a couple of days ago!!!
                                    RhondaF
                                    Participant
                                      I know they are working on this issue. I wish they could find my post!
                                    RhondaF
                                    Participant
                                      Anyway, I’ll make a really short post to update on my husband.

                                      He’s back in the hospital. Fluid buildup again around his heart. He had an Echo on July 8 that showed no fluid.

                                      He was coughing and had a fever and pain in his right chest. Couldn’t keep any liquids or food down. Took him to ER Saturday evening, they tried to drain the fluid with a needle 2 times and couldn’t. Did surgery Sunday morning to cut a window in the pericardium to drain it. They think he’s septic. He’s on 4 antibiotics.

                                      They think his gall bladder is infected. They keep treating the symptoms, but not answering why the fluid is building up. His TSH was high so Dr raised his levo on Saturday. His ALT and AST are high. Is there anything else I should look for?

                                      I’m beside myself what to do. I don’t know how to advocate for him.

                                      Today the hospital isn’t letting any visitors in that haven’t been vaccinated. I have not been. I discussed with his nurse. He says they have a lot of elderly in the hospital now and had a couple of outbreaks the past few weeks, so decided to implement this for safety. So I can’t see him.

                                      Any advice is appreciated.

                                      Peace, Rhonda

                                      RhondaF
                                      Participant
                                        Here’s a short update on Lee:
                                        His drain is out now. He’s up going to the bathroom, but still attached to stuff. He’s progressing in the right direction. They don’t have labs back on the fluid. The other blood work is improving in regards to liver enzymes, etc. Working on moving him to another floor. The nurse said he would not be surprised if he might be released tomorrow.
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