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Metastatic melanoma stage 4
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Metastatic melanoma stage 4

› Forums › General Melanoma Community › Metastatic melanoma stage 4

  • Post
    • November 29, 2023 at 4:23 am
    luvnlyf
    Participant
      Hi,

      I had blood in my urine and they found a tumor in my bladder. It turned out to be melanoma, they say it’s very rare, only around 35 documented cases in the bladder. I don’t have any melanoma on my skin, I’m very diligent about getting checked, so this is a big shock.

      They are still trying to figure out the primary. My PET scan shows that it’s in a bronchial lymph node. It might also be in my lung, but it’s too small to be able to show up on the PET.

      They checked behind my eyes and they look fine. Did a MRI on my brain and it looked good as well.

      I’m looking for help trying to figure out where to get care. I’m with Kaiser right now in Southern California, Orange County. It’s open enrollment, so I’m thinking of switching insurance to a PPO, so that I can go to cancer center hospital. I have scheduled a second opinion at City of Hope. I was curious if anyone had any recommendations for other cancer centers. I have no issues traveling for treatment, I am just hoping to find the best care and a place that might be able to help with rare cases of melanoma.

      If you’re reading this, thank you for your time:)

    Viewing 14 reply threads
    • Replies
        • November 29, 2023 at 9:18 pm
        Bubbles
        Participant
          Hi L,

          Sorry for what you are dealing with. Sadly, melanoma can do anything it likes. However, it is not the death sentence it once was. Especially since it seems you are dealing with a localized lesion that was found relatively early. You may find the primer I put together helpful in starting your understanding and formulating questions about your treatment and options –

          Primer – updated 2022

          Further, there is a link at the end that notes world renowned melanoma specialists.

          Know that there are even more treatment options in studies. Hang in there. There is certainly hope! I wish you my very best. Celeste

          • 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.
            • 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?
              • December 1, 2023 at 8:21 am
              Bubbles
              Participant
                These days most local oncologists are FINALLY well versed in administering and watching appropriately for (and treating if need be) side effects related to immunotherapy. This was not always the case! Currently, for very straight forward melanoma cases, a second opinion with an expert is not required, though never a bad idea. However, treatment is essential. Getting treatment with immunotherapy (the ipi/nivo combo in my opinion as is has the best response rate) quickly would be my priority. However, given your situation I would feel better with a follow-up second opinion. I would look to their expertise re: Their best treatment rec. Their rec for follow-up. Any additional tumor testing they would suggest. Any additional information, ideas, or advice they might have.

                Often the local onc can put in motion any suggestions they make. Or, you can switch to the expert’s care entirely. I would make sure that I could follow-up with them again, should any complications (side effects, progression, etc) arise.

                c

                • 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!

                  • December 3, 2023 at 12:15 am
                  caman
                  Participant
                    Hi, sorry you are going through all this. I also live in Orange County. Take a drive to LA and see Dr Omid Hamid. Not only a real good person but a leader in melanoma research and will guide you in the right direction and treatment plan. All the best to you.
                    • 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 7, 2023 at 2:38 am
                      JudiAU
                      Participant
                        Angeles Clinic is great. Dr. Hamid is wonderful.
                        • December 7, 2023 at 10:56 am
                        Cat
                        Participant
                          Dr Hamid saved my life with Stage 4 melanoma. I highly recommend him because he is not only a brilliant doctor, but has dedicated his life to melanoma research and treating melanoma patients. You will not find any other doctor with his experience in melanoma treatments, melanoma research and clinical trials for melanoma than Dr Hamid.
                          • 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 13, 2023 at 12:13 pm
                              Cat
                              Participant
                                Dr Hamid is the best. Good luck with the clinical trial.
                              • December 18, 2023 at 11:12 am
                              Miriam Kadosh
                              Keymaster
                                Thank you all for your insights here. We also have a treatment center finder here if you need additional help finding a center near you: https://melanoma.org/treatment-center-finder/

                                The MRF will be doing a patient and caregiver symposium with Dr. Hamid on February 7th. If anyone is in the area we would love to have you register and join! Reach out to me at [email protected].

                                Thanks!

                                Miriam

                                • 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!

                                  • April 19, 2024 at 1:05 pm
                                  Bubbles
                                  Participant
                                    Wonderful news, Luv!!!! Hang tough! c
                                    • April 20, 2024 at 12:56 am
                                    JudiAU
                                    Participant
                                      Really terrific news Luvnlyf. But take all the drugs you get lol. I asked for extra and tried to stay on immunotherapy for as long as they would let me!
                                      • April 26, 2024 at 5:57 am
                                      Ryan Smith
                                      Participant
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