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AliCat61
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AliCat61

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      • August 2, 2017 at 10:29 pm
      AliCat61
      Participant

        Wally, that is such wonderful news! Thank you for sharing!

         

        • July 26, 2017 at 4:10 pm
        AliCat61
        Participant

          So happy for you! Congratulations! Go out and celebrate big!

          • July 26, 2017 at 4:08 pm
          AliCat61
          Participant

            I am so happy for you! By sharing your good news, you give all of us hope. 

            • July 16, 2017 at 9:43 pm
            AliCat61
            Participant

              I think I've found the blog post that I need to re-read: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/neurologic-side-effects-to.html

              I'll start with that one and all the links in it, but would still appreciate any additional input that you may have.

              • July 16, 2017 at 7:38 pm
              AliCat61
              Participant

                I have Viva Medicare Plus.  Southern Cancer required a $6000 up front payment before they would start my yeroy/opdivo combo infusions. I too had to request help from Bristol Myers Squibb. It took over a month to get approved. There is supposed to be someone in the office at Southern Cancer Center to assist with this. However, only after repeated calls to the Southern Cancer Center office did I find out that I had initially been rejected. I was asked to write a letter of appeal. I did so, and a little over a week later I was approved. All in all, I lost over a month waiting to start treatment because of Southern Cancer Center's policy of requiring $6000 up front. Be persistent. Call often to check progress. Call Bristol Myers Squibb directly and ask them about the status of your application if you feel that you aren't getting straight answers from the doctor's office. Don't be afraid to be a nag, It may save your life!

                • June 28, 2017 at 12:30 am
                AliCat61
                Participant

                  Hi Cindy. The small tumor that my husband had in his parotid gland got much bigger, very quickly, within a couple of days after his first combo treatment of Yervoy/Opdivo. it doubled in size and extended behind his ear, causing him tremendous pain.  It lasted about 4 days, and then started to shrink, until it was gone. A recent PET scan showed no trace of it. I don't know if that could explain a high SUV or not, but I vote for hopeful!

                  • June 17, 2017 at 2:22 pm
                  AliCat61
                  Participant

                    I am so very sorry for your loss. If you ever need to talk or vent I'm here. I can imagine the depth of your pain as the possibility of losing my husband is overwhelmingly painful to me. I can't allow myself to even think about it right now, as I am focused on beating this. May we will, maybe we won't, but I can't even allow myself to think about it If I am going to be helpful to him and positive. I will fall apart later.  Please know that I am praying for God to give you peace and comfort. If you ever want or need to talk I have an open ear. 

                    • June 17, 2017 at 2:17 pm
                    AliCat61
                    Participant

                      Donna, My husband (Stage IV metastatic melanoma) was scheduled for 4 rounds of the Yervoy/Opdivo treatment. He started in March. A couple of his treatments had to be postponed due to complications, pneumonia, etc. They have decided that his enlarged heart and fluid in and around lungs is a result of the Yervoy. He successfully completed 3 treatments, but it is not wise for him to have the 4th. The plan now is to just skip that 4th combo treatment and continue with Opdivo (nivolumab) infusions every 2 weeks, indefinitely as long as he is responding. It is my understanding the Opdivo alone as far fewer side effects. Even with only 3 treatments, the tumor in his parotid gland completely disappeared and the spot on his lung has gone from 2.3 mm to 1.8mm. We are optimistic. Stay strong and talk with your doctor., If you don't understand something or question a course of action, ask the doctor to clarify until you do. There are very knowledgeable people here, Celeste (Bubbles) especially, who have a treasure trove of information. I'm sure others will chime in. Stay strong! I'll be praying for you and your husband.

                      • June 17, 2017 at 2:04 pm
                      AliCat61
                      Participant

                        Kamga, my husband has stage 4 metastatic melanoma. He is on Opdivo, rather than Keytruda, but he is responding favorably. Not so very long ago the life expectancy for a stage IV metastatic melanoma diagnosis was pretty short. Thanks to ongoing research and a steady stream of new medications and treatments becoming available there is a lot more hope now. You will hear stories here of people who have lived with that diagnosis for a long time and lived well. I hope you find comfort knowing that you are not alone. There are so many kind and knowledgeable people here. You chose a good community to come to for help and comfort! They have gotten me through a lot of hard days. I will pray for you and your mother. 

                        • August 2, 2017 at 10:42 pm
                        AliCat61
                        Participant

                          What an inspiring answer Charlie! Thank you!

                          • July 16, 2017 at 11:06 pm
                          AliCat61
                          Participant

                            You and Ed are both awesome and amazing! Thank you, thank you, thank you!

                            • July 16, 2017 at 10:59 pm
                            AliCat61
                            Participant

                              Thank you from the bottom of my heart, Celeste! Knowledge is power. 

                              • July 16, 2017 at 10:06 pm
                              AliCat61
                              Participant

                                Thanks so much, Ed! I did find this blog post https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html where Celeste states emphatically that "STEROID USE DOES NOT DIMINISH RESPONSE!!!!". I'm just not sure whether that applies only to medically necessary "breaks" from immunotherapy or whether it might also apply to steroids in conjunction with immunotherapy. Hopefully, I'll have a better idea after re-reading everything and watching the video. in the link that you posted. Thanks so much, not just for sharing your knowledge, but also for being a nice, kind, and compassionate person in general. You ALL have been lifesavers. Kindness and compassion mean SO much, always, but especially on days when I am scared and feeling beaten down and unheard. Be blessed!

                                • July 16, 2017 at 7:49 pm
                                AliCat61
                                Participant

                                  Sadly, it is not unheard of. It is common practice at Southern Cancer Centers. I have Viva Plus medicare coverage and I was asked to pay $6000 upfront. 

                                   

                                  • June 17, 2017 at 2:56 pm
                                  AliCat61
                                  Participant

                                    That's WONDERFUL Barb! 🙂 Keep us all posted please. 

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