Need Guidance and Information Please. 3B
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Need Guidance and Information Please. 3B

› Forums › General Melanoma Community › Need Guidance and Information Please. 3B

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    • May 17, 2020 at 6:12 pm
    THMoore
    Participant
      I was diagnosed 3B after I was diagnosed with Melanoma of the parotid gland in Feb. I am a patient at MD Anderson in Houston. I had no primary. Just woke up with a swollen neck. I had surgery Feb 26 to remove 48 nodes and a partial parotid. 1 lymph was melanoma. All others clean. I then had radiation to the area. Finished April 15th. I was rescanned Friday and have 2 lymph nodes in the same area that are positive. I was shocked. Nothing else was found. My question is why not remove the nodes while they are 2 mm? The Dr wants me to start Opdivo On Tuesday. Has anyone else had a recurrence 2 weeks post radiation. I feel like I wasted 2 months. I would truly appreciate any guidance and advice
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    • Replies
        • May 17, 2020 at 6:48 pm
        Bubbles
        Participant
          Sorry you continue to have troubles. Melanoma is a beast. As I think I shared with you on a prior thread, we have learned that radiation alone is not terribly effective in melanoma. Why on earth MDA would continue to use it as a single agent is beyond me. However, when COMBINED with systemic therapy the results are better than with either treatment used alone. Here are tons of data to that effect: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy While some of these reports are specific to brain mets, we have learned these facts are true throughout the body. BUT!!! All is not lost. You will be getting Opdivo in very close proximity to your radiation treatment so you should still reap the benefits of both and so have NOT wasted your two months.

          As to leaving the nodes in place.- it seems very counter-intuitive to leave crap within doesn’t it???!!! (Though I do have a question as to how they know two nodes are positive for melanoma if you have had nothing more than a scan with no biopsy, but no matter.) Still, we are learning more and more about the benefits of NEO-adjuvant treatment (that very thing). Here are lots of reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=neoadjuvant

          Hope this helps. Hope your opdivo treatments go well and are super effective. Even when we go to major cancer centers for our care, we must still be our own advocates in order to attain the care we deserve. Sad that is the case, but there it is. Hang in there. I think you still have a good prognosis and treatment plan ahead of you. I wish you my best. celeste

            • May 17, 2020 at 7:32 pm
            THMoore
            Participant
              Hey Miss Bubbles,
              I questioned the radiation before taking it. They explained that 90% chance nothing would return to that area. Well I’m the lucky 10%. The I felt a small bump at the bottom of the incision area and asked for scans. I had a PET, then ultrasound with biopsy which again I didn’t want because the PET SHOWED hot on the lymph. The Dr explained it could be from other things but I knew better. The results were provided within 15 minutes. Really pissed me off. I know my body after being a quadriplegic for 40 years. Met with the Oncologist, which works as part of Dr. Jim Allison’s team. He explained I do not have any BRAF, or NRAS genes. He told me my status hasn’t changed, just wants me on NIVO. Do you have the BRAF genes? I am just confused, seems like I’m right back where I was before surgery, minus my taste buds. The Dr explained, that I could have the nodes removed in the future if the treatment works. My thought is, do it now. But hey, they are the Pros. So we will see. Thx 4 taking time to talk. Really scared here. T
              • May 17, 2020 at 7:57 pm
              Bubbles
              Participant
                I am really glad you found the swollen area and got the scan! Still, having dealt with melanoma for 17 years now and knowing my body very well, it is impossible to know if something is lighting up due to melanoma or something else entirely without the biopsy. So – I am very glad that was done. Despite it being news you didn’t want, it is best to know what you are dealing with. You have NOT wasted your time having had the radiation nor suffered needlessly. I wish they had started you on Opdivo simultaneous to the radiation, but…we can’t undo what has been done. HOWEVER, going forward with the Opdivo ASAP will still give you the positive benefits of the combination of immunotherapy WITH radiation that all the reports I linked for you document. In fact, I just put up yet another post on ANOTHER article pointing out the same results. Radiation WITH immunotherapy provides better overall survival for patients. I know you are in a scary place. Been there done that. However, with radiation, surgery, and nivo to skin lesions along with brain and lungs mets – I am still here. It’s not easy, but you got this! Hang tough. c
                • May 17, 2020 at 9:06 pm
                THMoore
                Participant
                  I am asking the surgeon tomorrow for advice on removing the nodes while they are small. On the flip side, leaving them in place I might be able to see reduction. If I remember the Drs told me originally if they had known my tumor was melanoma to begin with, they mentioned they might of started me on immunotherapy
                  • May 17, 2020 at 10:41 pm
                  Bubbles
                  Participant
                    Yes, take a look at the NEO-adjuvant articles I sent you. They are having some very good results in treating folks while the melanoma is still in place! c
                    • May 21, 2020 at 11:00 pm
                    THMoore
                    Participant
                      Bubbles,
                      I have a question? When I met with oncologist at MDA, he explained my tumor chemistry results but I am still confused. He stated I have the BRAF gene but not the one required for targeted therapy. Does that mean everyone has a BRAF gene? Does it make me BRAF + or BRAF -? Can you better explain. He said I needed to have a BRAF v600 gene for therapy. So does everyone have a BRAF gene?
                      • May 22, 2020 at 12:14 am
                      Bubbles
                      Participant
                        I’m not at all clear on what your doc told you. You can ask for a copy of your path report. About half of melanoma patients are BRAF positive. Here is a piece I wrote that breaks down what being BRAF positive is and what it signifies: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                        Here is a primer written about all the current melanoma therapies – targeted (these are the drugs that work for patients who are BRAF V600 posiive, with a pretty cool graph of various pathways), immunotherapy (like Opdivo) and radiation: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-stuff-treatment-options-and-current.html

                        Hope that helps. You may also find the search bubble at the top left corner of my blog helpful. c

                        • May 22, 2020 at 12:34 am
                        THMoore
                        Participant
                          He stated I was I had a BRAF K601E but not V600. So he explained that targeted therapy that is used for the BRAF mutation would not work. So am I BRAF positive?
                          • May 22, 2020 at 2:39 pm
                          Bubbles
                          Participant
                            In light of current standard targeted therapy – the short answer is no – not BRAF positive in that sense. There are some reports that even the less common variants may respond to some of the targeted therapies, but that would be something to discuss further with your doc.. c
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