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Judy Steven's wife
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Judy Steven's wife

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      • March 14, 2017 at 12:06 am
      Judy Steven’s wife
      Participant

        I have my ups and downs as caregiver too and it always follows how Steven is doing. If he is not well, then he doesn't want to drink etc and then I get worried for dehydration etc, and start pushing even more….which does not work….sigh…. very frustrating, he ended up in ER twice for weakness due to dehydration…. And when he is in a bad mood, I always will try to remind myself that its not really Steven saying this, but Steven suffering from brain tumors and loads of steroids that are changing his behavior……so do not take it personally, but it's not fun……. luckily most of the time he's just a sweetheart who is thankful for my help, love and support, even now, when he needs care for every basic need. Ttoday in the hospital ( S is admitted right now) the doc was asking him if he knew what day it was etc and he asked if Steven knew who I was…Steven said, she is the nurse…..doc thought Steven lost even more braincells, but it was a cute joke 🙂 Oh and that helps too, just make a joke if you can, that helps us a lot.

        • March 13, 2017 at 11:46 pm
        Judy Steven’s wife
        Participant

          I am so sorry for your loss Annie, I wish you and your family lots of strength in these difficult times

          • March 2, 2017 at 2:33 am
          Judy Steven’s wife
          Participant

            Hi Janis, thanks for your update. My husband also has brain mets, did WBRT in January and after tapering off steroids, he got nivo+ipi, but after three days he needed steroids again, because of brain edema, he was in bad shape and I brought him to ER. He is still on steroids (12 mg decadron) and he would have had his seconds nivo/ipi infusion today, but….we need to taper off first…….kinda scary that we don;t know if he will ever be able to do without steroids and get more immunotherapy. Sounds like the same with Shane.

            I wonder how his trembling started? Steven also has some shaking in his hands going on that seems to get worse. How did it start with Shane?

            I hope it all works out well for him.

            • February 25, 2017 at 6:01 pm
            Judy Steven’s wife
            Participant

              Hi Michele, just curious, what did you read about it? I made my husband some 'golden milk' every day (till he got the mouth sores), he's on nivo/ipi. Golden milk is a mix of turmeric (with the curcumin) and ginger. I assumed it would be okay to do.

              • February 24, 2017 at 3:04 am
              Judy Steven’s wife
              Participant

                that is wonderful news, I need to read those to keep faith! So thanks for posting and blessings to you!!

                • February 24, 2017 at 2:53 am
                Judy Steven’s wife
                Participant

                  Hi, my husband has multiple mets in brain too. He showed some neurological symptoms two weeks ago, and that was because of swelling in the brain / oedema around some of the tumors (that had been radiated with WBRT). So please ask your oncologist/doctor to check him out.

                  I often check Steven;s eye's how they track and test his left and right responses etc, just to make sure he's not having any neurological stuff going on or more bleeds of the lesions etc.

                  Stay on top of it. Good luck!

                  • March 13, 2017 at 11:45 pm
                  Judy Steven’s wife
                  Participant

                    Thank you Ann. Did your husband have other tumors at that time and was he in good shape?

                     

                    • March 13, 2017 at 11:43 pm
                    Judy Steven’s wife
                    Participant

                      Hi Jen, surgery does not really seem to be an option at the moment. I am a little hesitant about it too, Steven as well, I think it also depends on how the rest of his tumors are doing in his body, and he will still have six tumors left in the brain….. So not sure about that….. there is not a melanoma specialist here but the whole team of oncologists and radiology looked at his case . Tomorrow he will have a CT of his abdomen to see how things are there…

                      • March 13, 2017 at 11:11 pm
                      Judy Steven’s wife
                      Participant

                        Hi Deb, thank you for responding! When you had progression, was it in all tumors or just one or a few?

                        They will do another CT scan of his abdomen to see what has happened there with the tumors. Doctors here think it is probably not pseudoprogression as it apparently is quite a mess around two big tumors in the head and seven other are calm but still sitting there. Well, for now, we just have to get his edema in the brain under control and he will get some more steroids, as the increase from 12 to 16 mg dex per day didnt do much….so we will have to take it day by day and hour by hour….in the meantime  he will stay in hospital, me too, and wednesday when we know more about other scan we will see where to go….

                        • March 6, 2017 at 1:11 am
                        Judy Steven’s wife
                        Participant

                          Thank you! Your blog is really interesting and loaded with info!

                          I found this article this morning, and in the beginning it talks about Impact of immunosuppression on efficacy

                          http://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy?source=see_link

                           

                          • March 4, 2017 at 8:03 pm
                          Judy Steven’s wife
                          Participant

                            Thank you Celeste! I will talk to oncologist about that this Monday, you are absolutely right

                            • March 4, 2017 at 12:53 am
                            Judy Steven’s wife
                            Participant

                              Hi Celeste, thank you for sharing. My Steven is currently still on 12 mg decadron per day (1st combi infusion 3 weeks ago) and they say he needs to taper off   before 2nd infusion of nivo/combi. I have also heard them say that combi infusion is possible when patient is still on a certain level of steroids. I'm curious as what that level is, do you know more about that? Because I suspect that Steven might not be able to do with 0 steroids, because of so many tumors in brain . But we hope that he can get a 2nd infusion. Last ct scan showed tumors are responding to the treatments it seems

                              • February 21, 2017 at 2:49 am
                              Judy Steven’s wife
                              Participant

                                Thank you Celeste, we will discuss this with the oncologist too. I bought some numbing stuff to put on it, as the 'magical mouthwash' from the doctor didn't do much, and now at least he can drink and eat (=drink soup) at certain times of the day.

                                • February 20, 2017 at 5:58 am
                                Judy Steven’s wife
                                Participant

                                  Hi Patina, he had a bit of thrush but that went away quickly after using the tea tree oil. I can see the sores in the mouth, I think they are called canker sores, really painful and drinking/food burns. He does get pro-biotics, whole milk kefir in his smooties en no sugar indeed.

                                  What did your mom do when she could not eat or drink? Steven has already lost so much weight and gets easily dehydrated. It just worries me how to get nutrients in him, as the more depleted he gets, the worse the weakness/fatigue will be

                                  • February 20, 2017 at 5:58 am
                                  Judy Steven’s wife
                                  Participant

                                    Hi Patina, he had a bit of thrush but that went away quickly after using the tea tree oil. I can see the sores in the mouth, I think they are called canker sores, really painful and drinking/food burns. He does get pro-biotics, whole milk kefir in his smooties en no sugar indeed.

                                    What did your mom do when she could not eat or drink? Steven has already lost so much weight and gets easily dehydrated. It just worries me how to get nutrients in him, as the more depleted he gets, the worse the weakness/fatigue will be

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