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Have we run out of time?
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Have we run out of time?

› Forums › General Melanoma Community › Have we run out of time?

  • Post
    • August 6, 2019 at 1:40 pm
    Lou39
    Participant
      Hi all,
      My Dad had his first Yervoy/Opdivo treatment 4 weeks ago and had to take a break for a week due to liver inflammation (the melanoma has spread to his liver and spine). He was on a 5 day course of prednisolone at 30mg per day. Blood test results from yesterday indicate that the inflammation is no worse, but also no better. The consultant thinks the inflammation is caused by the cancer advancing and I’m wondering if we have gone past the point of no return? Despite the inflammation the consultant has advised that my Dad has his second treatment tomorrow. He has warned us that the side effects could be fatal, but as the cancer is advancing we have no choice. I just don’t know what to think, hope seems to be diminishing daily. My Dad is very poorly, he has some swelling in his feet, pain in his abdomen and some jaundice. He has lost hope. I’m trying to be positive for him and my Mum, but I don’t want to give them false hope. Any experiences or advice would be gratefully received.

      Lou x

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    • Replies
        • August 6, 2019 at 2:39 pm
        MarkR
        Participant
          Sorry to hear about this – given the circumstances and shortness of time it sounds like the right decision to progress with Ipi / Nivo and hope it kicks in quickly. If he is BRAF Positive then you could talk about Braf inhibitors that can work very quickly but best to discuss this with your oncologist
          Wishing you all the best
          Mark
            • August 6, 2019 at 3:17 pm
            Lou39
            Participant
              Hi Mark, thank you for the reassurance regarding the decision. I will ask my parents to query whether my Dad is BRAF positive at their treatment appointment tomorrow. It’s definitely worth a shot.
              Lou x
            • August 6, 2019 at 2:44 pm
            Casitas1
            Participant
              Hi Lou, Back in 2016 I had a bout of Immune related liver issues. My counts went up above 1000. My Dr. had me on 100mg. prednisone a few weeks to bring down my numbers and resume treatment. It took several months but was able to taper down to 3mg. which I still take daily. I became NED while on high doses of Prednisone. Maybe ask doc to up your steroid dose

              Best to you and Dad, Paul

                • August 6, 2019 at 3:22 pm
                Lou39
                Participant
                  Hi Paul, thank you for your reply. Because the liver inflammation seems to be related to the cancer rather than the immune response, I’m not sure if more steroids will work. Unfortunately there was no change in the inflammation when he was taking them. Although saying this the consultant has prescribed more steroids for after his next course of treatment. I’m wondering if these are just to control the immunotherapy side effects.
                  Lou x
                  • August 6, 2019 at 9:52 pm
                  NewEra
                  Participant
                    Has your Onco provided the facts/data on how he has determined that the liver issues are cancer and not side effects of treatment? It seems that a lot is riding on whether he is right!

                    It is my understanding that high dose Prednisone can address the inflammation no matter what the source! AND, it doesn’t HURT the patient, or the IPI/Nive treatment. No harm, no foul. Totally worth a try.

                    TRUST, but VERIFY!

                  • August 6, 2019 at 8:04 pm
                  MelanomaMike
                  Participant
                    Ah Lou! Once again im sorry to hear about your dad, its a tough deal when ya have Melanoma in the Liver and taking Immunal Therapies, blood tests get all out of whack and i imagine it can be tricky to detect if its the Melanoma or the Ipi/Nivo causing the grief! Im with Mark, get that next infusion going!!
                      • August 6, 2019 at 8:37 pm
                      Lou39
                      Participant
                        Hi Mike, thank you for the support, it means a lot. I’m taking comfort from the fact that the inflammation is no worse and I’m hoping that tomorrow’s treatment will start turning things around for him.

                        Lou x

                        • August 6, 2019 at 9:33 pm
                        Mark_DC
                        Participant
                          Dear Lou,

                          I agree with Mike and Mark R – the inflammation could well be due to the medicine not the cancer, I dont see how they would know how to distinguish.
                          Also even if the inflammation or enlargement is caused by the cancer, your dad might be lucky and this could be pseudo progression – that there is an inflammatory response first to the immunotherapy, and then it works.
                          I would hope for more prednisone to solve the inflammation and then going back on treatment (both together if this is possible, but my doctor would not allow this)
                          Also check for BRAF status.

                          Make sure you have a melanoma specialist. I personally dont think you have run out of time. You may want to check whether a second round of treatment risks being fatal (doctors dont usually say this imho, or if they said this they would not give treatment), so maybe when you see the doc come in with a list of questions and write down the answers. its all overwhelming particularly at the start and/or when things dont appear great.

                          Talk to the doctor before treatment and I hope tomorrow it goes well
                          good luck Mark

                          • August 6, 2019 at 10:05 pm
                          NewEra
                          Participant
                            Agreed – I don’t think an American doctor would use the words “could be fatal” – they dumb it down to “It is high risk to proceed, but I think it is prudent in the circumstances”.

                            But I’m bettin’ our friend Lou may bit a Brit, as most of us Yanks say “Mom” not “Mum”! Maybe it’s different on the other side of the pond!

                            • August 6, 2019 at 11:05 pm
                            MelanomaMike
                            Participant
                              Haha! I caught that to “Mum” haha..i wonder if their complete word for Mum is Mummy? Compared to Mom & to Mommy? Just pokin fun atchya!
                            • August 7, 2019 at 4:04 am
                            MelMel
                            Participant
                              30 mg of prednisone per day is nothing. I had a drug induced liver injury last Dec (following my second infusion of ipi and nivo) and they put me on 160 mg intravenously in the hospital. After 5 days I was home and on 80 mg which did not do much. Within a week my liver enzymes shot up to 1000 and back in hospital I went. This time, not only did I get 160 mg of prednisone but 3000 mg of tissue rejection drug called Cellcept as well. After a week in the hospital, I was released. It took almost three and a half months to wean myself from the steroids. Since mid May, I have resumed immunotherapy and I am on Odivo alone. Ask for more steroids and wait. Liver numbers do not go down rapidly in days.
                              Please never give up! If there is life, there is hope.
                              Wishing your dad strength and a speedy recovery so that he can resume treatment.
                              Melanie
                                • August 7, 2019 at 4:05 am
                                MelMel
                                Participant
                                  Opdivo*
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