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Susanlee528
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Susanlee528

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      • July 20, 2018 at 1:01 am
      Susanlee528
      Participant

        I don’t know anything about ports in the arms but I have a port in my upper chest and it is the best thing I’ve ever had! And there’s no way to pull it out because it’s under the skin. They have to pierce the skin each time to go into the port but it is so much easier than finding a vein every time.  I can’t even imagine doing this without one! 

        • July 20, 2018 at 12:58 am
        Susanlee528
        Participant

          Yay! That’s awesome news!

          • July 19, 2018 at 3:04 am
          Susanlee528
          Participant

            I am exactly where you are. I have had a couple extra biopsies that I probably didn’t need. But I’m glad I did because I would’ve been worried about them until I did it. I can’t give you any advice as to how not to feel that way because I’d like to know that myself! But you’re not alone. I’m sure everyone on this site understands what you’re going through!

            • June 18, 2018 at 10:58 pm
            Susanlee528
            Participant

               I am on my fourth month of Opdivo. I make sure to get my treatments on Fridays because I can’t do anything for two days after each infusion. I sleep most of the following 24-36 hours. Other than that, work isn’t a problem for me. 

              • August 29, 2018 at 6:49 am
              Susanlee528
              Participant

                 I had my first double dose this past Friday. I slept a lot more the first few days but other than that I’m feeling fine so far. It will be very nice to not worry about it so often. It felt like I was constantly either recovering, or getting ready to go do it again! I’d definitely have your son give it a try. He can always go back to every 2 weeks if he doesn’t react well. Best of luck to him!

                • June 21, 2018 at 12:45 am
                Susanlee528
                Participant

                   Thanks so much for the responses! I saw my dermatologist today. She felt that the spot I saw was a freckle or mole that got stretched out by the scar tissue. She wasn’t overly concerned, but she took a biopsy to be safe. I was very happy to have that done! I told her, feel free to take a chunk out of every mole on my body if you want! LOL.  So, I feel a little bit better but I won’t be able to relax until I get the results back. 

                  • June 19, 2018 at 6:21 am
                  Susanlee528
                  Participant

                    It must be different at different places. I was able to bring a book, or play my iPad, or whatever during the PET scan wait/chill out time. 

                    • June 18, 2018 at 3:56 pm
                    Susanlee528
                    Participant

                       I have the same question because I have a nasty looking mole that popped up in the scar tissue of my WLE. I can’t get in to see the doctor for two days and it’s freaking me out!  Being on Opdivo, I was hoping that I wouldn’t have to worry about that! 

                      • May 27, 2018 at 7:57 am
                      Susanlee528
                      Participant

                        Thanks for the suggestions. I’ve been experimenting and I found a nutrogena spray that isn’t greasy and doesn’t leave marks everywhere. I trust lotions a bit more than sprays, but this has pretty good ratings and it’s easy to reapply often. 

                        I will also check out the No-ad stuff and also those seat covers mentioned! I’ll get this all mastered some day! 

                        • May 23, 2018 at 1:33 am
                        Susanlee528
                        Participant

                          YES! What she said (above)! You have the option of Opdivo, and I would take it if I were you! I thank God every day that I have that option. Almost anything beats waiting….

                          • May 21, 2018 at 2:24 pm
                          Susanlee528
                          Participant

                            Thanks Ed and RACO for sharing your experience. With all of the amazing results that Opdivo has had, I am definitely thankful to be able to be treated with it, no matter the fatigue. And I make sure to plan ahead so I have the time to sleep. I just hope this is the extent of it. I felt like a hibernating bear!  There are much worse side effects I could be having so I am trying hard not to be a whiner about it or feel sorry for myself. But it gets hard, especially on the kids. I appreciate having a place like this to vent instead of whining to my family even more than I already do. 🙁

                            • May 21, 2018 at 3:08 am
                            Susanlee528
                            Participant

                              Thank you so much for sharing that! It helps so much to hear the positive stories!

                              • May 2, 2018 at 8:46 pm
                              Susanlee528
                              Participant

                                Another Minnesotan here! I’m about to start the once a month dose and I’m pretty leery. I think i would rather go an extra time each month if the side effects were less of a problem. 

                                • May 2, 2018 at 8:40 pm
                                Susanlee528
                                Participant

                                  Hi Dessie, I’m on the exact same schedule as you, 5th treatment tomorrow, every other Thursday and I have the same issue. About a week or so after I get hit HARD. Dizziness and vision issues have been the hardest to deal with. Fatigue is bad, but I am on Ritalin also, and it’s a life saver. I would definitely try an antihistamine, though many make fatigue worse. Good luck! I always look for your posts since we are on the same treatment path. And good luck with the colonoscopy! I’ll be praying for good news!

                                  • April 25, 2018 at 2:44 am
                                  Susanlee528
                                  Participant

                                    Well, it looks like the blurry vision was, in fact, just a side effect. My brain MRI came back completely clear!! I am so incredibly relieved!! Thanks for all the support!

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