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luvnlyf
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luvnlyf

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      • February 22, 2025 at 3:55 pm
      luvnlyf
      Participant
        Hi everyone,

        I’m back with an update—my PET, CT, and MRI scans are all clear, and I’m officially cancer-free! Dr. Hamid confirmed that I’ve had a complete response. Since my side effects have been manageable and my blood work looks great, he’s keeping me on the trial for the full two years.

        He mentioned that if I stay in remission for the next three years, I have a 95-96% chance of remaining cancer-free. This combination of immunotherapy is really working for people!

        I know colitis can be a major hurdle for many on immunotherapy, so I wanted to share something that helped me significantly—a probiotic called Visbiome. It’s a bit pricey but absolutely worth it. Anytime my stomach started acting up, I took it, and it worked quickly. Thankfully, I rarely need it anymore.

        I also just want to say thank you to everyone in this forum—you’re lifesavers. I’m not sure I would have found Dr. Hamid without you!

        • October 4, 2024 at 3:41 am
        luvnlyf
        Participant
          I appreciate that you’ve shared your story! It really does help:)
          • April 18, 2024 at 9:40 pm
          luvnlyf
          Participant
            I want to come give an update. The treatment appears to be working. I just got a scan after 3 infusions. The spots in my lungs and one lymph node are now gone. One of the lymph nodes that was 4cm is now 1cm and only one other lymph node that has it and it’s now half the size. They are saying at this rate I might be able to stop treatment early.

            Thank you everyone for your support!

            • March 23, 2024 at 5:35 am
            luvnlyf
            Participant
              I appreciate your response, I’ll take a look at that. Most of the rash has gone, I just have one area with the rash currently. It might be my imagination, but it does seem like the Sarilumab might be helping with some side effects.
              • December 11, 2023 at 5:57 pm
              luvnlyf
              Participant
                So wonderful to hear! Looks like I will be doing one of Dr Hamid’s clinical trials. I really appreciate everyone that has taken the time to respond.
                • December 3, 2023 at 12:37 am
                luvnlyf
                Participant
                  Dr Hamid is one of the doctors I do have an appointment with next week. I happy to hear you enjoyed working with him. I appreciate that you took the time to share your experience!
                  • December 2, 2023 at 12:16 am
                  luvnlyf
                  Participant
                    I appreciate your time bubble, it’s very kind of you take the time to do so. Thanks to your link I was able to locate 2 doctors In my area and that are experts and they are both willing to meet with me next week.

                    My current oncologist did mention the ipi/nivo combo to me and I’m meeting with her next week too.

                    Thank you again, you have given everyone such a valuable resource to reference!

                    • November 29, 2023 at 11:32 pm
                    luvnlyf
                    Participant
                      If you don’t mind me asking. I didn’t hear back from either of the doctors today. Do you think it’s more important to get in with the right doctor, or try to get an immunotherapy going sooner? Would it cause any issue to wait for the right doctor?
                      • November 29, 2023 at 10:58 pm
                      luvnlyf
                      Participant
                        Thank you Bubbles for your kind response. The link you created is so wonderful. It’s exactly what I was needing. I already reached out to two doctors in my area that are on your list. You are so generous to share your knowledge.
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