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keepthefaith11

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      keepthefaith11
      Participant
        So sorry to hear about the progression. Does he have any other symptoms? Seizures, lack of brain functioning?
        My dad had 13 brain Mets. He did WBR radiation and five infusions of immunotherapy. He had numerous major seizures through the whole process and with each one he seemed to lose some of his brain functioning. They switched him to BRAF Inhibitors and right before he passed away half of the tumors in his brain were actually gone and half had shrunk by about half. But the damage to the brain was too much. Within 4 months he went from being able to walk to pretty much being completely incapable of communicating and not moving at all. He actually passed away from sepsis. What I’m trying to say is situation with his brain tumors actually improved significantly so there is hope. I think what killed him was the damage done by all the seizures. We don’t think it was the radiation because the damage happened to quickly.

        Annie

        keepthefaith11
        Participant
          So sorry to hear about your father’s situation. Have they checked his BRAF status? My dad had 13 brain mets and after 6 weeks on braf therapy half of them were gone and have had shrunk significantly.

          He had done whole brain radiation and immunotherapy before he got on the braf therapy. He had to stop the immunotherapy after 5 infusions due to colitis.

          Keep us updated on what Dr Hamid said.

          Annie

          keepthefaith11
          Participant
            CONGRATULATIONS Jen!!!! So happy to hear this! Have a wonderful Birthday!
            keepthefaith11
            Participant
              Thank you for remembering my dad Susan. I often think about those we lost this year as well. Especially last night, as this year ended. The holiday season has been extremely difficult for me but I’m trying to keep hope that those fighting will get a chance for a cure.

              Love to all.

              Annie

              keepthefaith11
              Participant
                Sharon, I don’t have much to offer but wanted to let you know that my dad had a nodule in his pancreas. They couldn’t say for sure it was a tumor but certainly a very suspicious. He started Opdivo and it disappeared after 4 rounds. Hang in there.

                Annie

                keepthefaith11
                Participant
                  Rob, I too, come on here almost daily even though it has been 9 months since my father passed from this awful disease. I come on to see if I can offer some input for others but also with hopes to see good news for all the people I got to know, and had such tremendous support from during my dad’s struggle.

                  I pray for healing and strength for everyone fighting and also strength for anyone helping a loved one through this struggle.

                  Annie

                  keepthefaith11
                  Participant
                    So very sorry….is she BRAF positive? If so, those the BRAF/MEK inhibitors can work extremely quickly, maybe giving time for the immunotherapy to kick in.
                    keepthefaith11
                    Participant
                      Dear Vanessa,

                      Before I share our experience I want to make sure that you know that in no way is it for certain your father’s situation is like my father’s was. We didn’t have a good outcome, but that doesn’t mean you won’t.

                      How many brain mets does your father have? I am assuming they did whole brain radiation, is that correct?

                      My dad was diagnosed with stage 4 last summer. He had a seizure in the beginning of July and they found 13 brain Mets ranging from 2 mm to 13 mm in size. He ended up doing two weeks of whole brain radiation. He was treated in Sweden at a research hospital, even so they did not believe gamma knife was appropriate with this amount of disease. I would have to disagree.

                      Anyway, they went ahead with the radiation and started immunotherapy a couple of months later. Two months after his first seizure he had another one. And two months after that yet another seizure. After the first seizure he started having difficulty with speech but was still walking and living his life. Even after the second seizure he bounced back pretty well. After the third seizure when he had already had four immunotherapy treatments is when things started going horribly wrong. His cognitive state had declined since diagnosis but seemed to start escalating at this point. He was on some heavy-duty anti-seizure meds as well. None of the doctors seem to understand why he was now incapable of walking and his cognitive decline was so severe. The scans back in February showed that the tumors had actually shrunk. This was after he had been on the BRAF drugs for about a month.

                      The scan also showed a “film” all over his brain. Something they did not know what it could be. I believe with radiation necrosis there should be white spots of dead tissue which he did not have. So I am not so sure that radiation damage was to cause. Especially for your dad, it happening so quickly after radiation, I don’t think that that is the cause. Unless it is a temporary issue that will heal itself. Permanent damage from radiation usually don’t happen until much later after radiation is finished.

                      I am also not sure immunotherapy had anything to do with it since studies show that mental decline is not one of the severe side effects. I think it is a combination of many things. The age of the patient, the amount of disease, and treatments such as radiation and immunotherapy combined. For my dad I also think the seizures were the ultimate culprit since with each one his cognitive abilities declined severely.

                      It is possible that this is a temporary issue for your dad after radiation. Are they seeing a huge amount of swelling? They also did a spinal tap on my dad to make sure there was no fluid in the brain. This might be something they could check on your dad as well since it could cause mental decline.

                      I know firsthand the incredible frustration over this issue and not getting any answers. My dad ended up passing away in March, but not from the actual cancer. He ended up with pneumonia and ultimately died from sepsis. By this time he had been bedridden since November and his body was just shutting down. He was 69.

                      For us it was just an unfortunate Perfect Storm. Everything that could go wrong did. I wish your dad all the best and will keep him in my prayers.

                      Annie

                      keepthefaith11
                      Participant
                        Oh Janis, my heart is breaking for you. Having gone through a similar situation with my dad I know how difficult it is to see their cognition vanish away. Even though it might seem they are not aware of what’s happening I firmly believe they are. You have been an amazing caretaker and keep showering him with love, he will find peace with you there with him.Sending all my love and prayers to you.

                        Annie

                        keepthefaith11
                        Participant
                          This is breaking my heart..Rest in Peace Jamie.

                          Annie

                          keepthefaith11
                          Participant
                            Jen, first of all I am so glad the MRI came back looking good! My dad had some pretty severe balance and dizziness issues after his third Nivo infusion. For him it lasted for about 4 days but it was so bad that my mom had to walk with him everywhere he went in the house. That was the only time he experienced that and they said it was a side effect from the infusion. How is your blood pressure? I think his was a bit low during that time as well.

                            Annie

                            keepthefaith11
                            Participant
                              She needs to be checked for the BRAF gene ASAP! Not sure why they would not have done this since it will open up a whole new line of treatments.
                              keepthefaith11
                              Participant
                                I am so glad to hear that he is doing better! And also to hear that he did not have whole brain radiation. With three brain tumors he is dealing with something much different than my dad. I am confident that his mental decline was temporary. Maybe a combination of treatments and the infection. I do believe that with older age comes more complications. Sounds like he is moving in the right direction and I will keep you in my prayers.

                                Annie

                                keepthefaith11
                                Participant
                                  Thank you Deb. I asked my dad for a sign he is still with us after he passed 2 weeks ago. 5 days after he passed my brother took a picture of the sunrise at their home. Looked like a normal sunrise but in the actual picture there is a huge white, bright angel shape in the middle of the sun. It took my breath away and I knew it was him sending us a sign. Never seen anything like it. Also a white big bird flew right in front of my car yesterday as I was passing the neighborhood they used to live in.
                                  I feel him with me all the time.

                                  Thanks again for your kind words.

                                  Annie

                                  keepthefaith11
                                  Participant
                                    Jenn, I am actually at the airport flying back to Europe for my dad’s funeral. Definitely not a happy time but I am dealing with it the best I can. I am coming back on Saturday and I will be bringing my mother with me. I don’t think I have completely understood that he is gone. Maybe the funeral will bring some closure. Thank you for asking.

                                    Annie

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