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Please advise on timing for follow-up scan

Forums General Melanoma Community Please advise on timing for follow-up scan

  • Post
    Affected
    Participant
      Hi Everyone,

      My husband is about to complete 2 weeks of 6 weeks of radiotherapy on his neck/head area after having had his parotid gland and tumor removed in July. Tomorrow he will be taking his second dose of adjuvant immunotherapy Nivo which he is scheduled to take for a year every 2 weeks. So far he has not had any visible side effects except some dry skin on the area that is getting the radiation. He is using 99,9% aloe vera gel to moisturize the area, and it is helping very much.

      After closely following this forum, I get the impression that follow-up scans are done approximately 3 months after surgery. Should we be asking for a follow-up scan for my husband given that next week will be 3 months since the surgery was done? We have gotten over the shock and are feeling quite normal again, but I feel we still have to be vigilant since the mytotic rate (19) of the tumour was very high.

      As always thank you very much to all who share on this forum.

      Affected

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    • Replies
        Baby_Girl
        Participant
          I would call the doctor and leave a message asking when the next scan would be. Doesn’t hurt to stay on top of it! My first scan was after my SLNB came back positive. I was told I would have a scan every 3-4 months. Almost 4 months after my first scan I called the doctor to ask about scheduling my next scan and I was told it would be 3-4 months after I started adjuvant immunotherapy . So it was actually 5 months between my first and second scan. And it was almost 4 months between my second and third scan. (And I just got those good results today! 🙂
            Affected
            Participant
              Hi Baby Girl,

              Thank you for sharing, and I am so happy to hear that your results were good!! Really delighted! You give me so much hope. I did ask the nurse to check with the doctor and was told it would be a year after the adjuvant immunotherapy began which would be a year from now (minus 2 weeks) as there wasn’t any need given that the cancer was resected together with 43 lymph nodes of which 2 were involved. It seems too long from now, so I will push to have one done before then. Again thank you so much and may you forever keep on getting good results.

              Affected

              kst
              Participant
                After removal of my primary in my left ear canal with positive snlb in June 2017, I had a complete lymph node dissection that included positive parotid nodes. I was given 5 doses of IMRT @ 6gy over 10 days to reduce the chance of recurrence in my facial area. I then received Nivolumab for 10 doses before IRAE’s stopped treatment. I had skin burning, sores in mouth, and loss of hair but it stopped at the end of treatment. So far still NED after 2 years. At the time, one of my doctors suspected combining radiation with immunotherapy increased response rates.
                Susanne
              swalters1038
              Participant
                After consulting with my doctor after radiation, he suggested waiting as the head/neck area would be inflamed and the CT would likely not show much. I however had a CT with contrast right before surgery (head to toe) and started radiation 2 weeks after surgery.
                  Affected
                  Participant
                    Hi Swalters1038,

                    Thank you very much for responding. I had hoped you would respond as your case is very similar to that of my husband’s. However, my husband is BRAF negative so he is not a TAF/MEK candidate, and unlike you, he began radiotherapy a little over two months after the surgery. (There are long waiting lists here in Ireland for the treatment.) He is to have 6 weeks of radiation, so given what you told me about the inflammation, I will ask the doctor around that time about having a CT scan after the inflammation goes down. How long did you have to wait to have another scan after your radiatiotherapy ended? or have you actually had a scan after your radiotherapy ended?

                    Thank you again for helping me during this time and hope that you and your family are doing well.

                    swalters1038
                    Participant
                      I finished radiation in the middle of august 2018 and subsequently had a PET Scan in October 2018. This scan was not scheduled but was due to elevated LDH levels. My normal scan schedule was for a Brain MRI and CT w/contrast in December. I have been on quarterly CT Scans ever since.
                      swalters1038
                      Participant
                        I should also note that I more or less have complete control of my own care. IF i feel like getting a scan(except for PET scan) or getting blood work done my oncologist works with me to get them done. IF i don’t feel like getting them done then I don’t and my oncologist lets me be. I spent alot of time on this board and researching standards of care for melanoma and its location. For me the mental/emotional side of my cancer battle has been the most difficult, so at least feeling like I am in control and have the ultimate say in my care helps me mentally. Best wishes….I actually have scans next week after pushing them off a month for a long overdue vacation. First post-treatment scans after completing a year of Tafinlar and Mekinist, the anxiety over the past few weeks has been exhausting.
                        Affected
                        Participant
                          Hi Steven,

                          I so much hope the scans all come out clear. I am so anxious about the results; please keep me informed if it’s not too much of an inconvenience for you. After two weeks and 1 day of radiation, my husband’s radiotherapy has produced the dreaded side effects: a really bad sore throat and for the first time, really red skin that has spread to just under his right eye. I went back to read your notes on how long your radiotherapy was and it was so much shorter than my husband’s despite having similar melanoma tumours. You mentioned that you had 5 doses over 10 days to your left neck/head area after a parotidectomy and modified left neck dissection. By any chance do you remember the number of greys in each of your doses? My husband’s dose is 2gys over 30 consecutive days not including weekends for a total of 60 greys. There was a conference on oncology last week to which I attended and at which I spoke with a Dr. Mario Sznol’s of the Yale Cancer Center. He told me that unlike Sloan Kettering Memorial (where my husband’s radiologist attended when he was in the US), they stopped doing radiation a while back because of the ability to use immunotherapy as adjuvant treatment nowadays. Besides the radiotherapy, my husband also began NIVO on the same day. So together with the knowledge that your radiotherapy was much shorter and Dr. Sznol’s recommendation to stop radiotherapy plus the side effects my husband has begun to suffer, I am wondering whether we should push for the therapy to end sooner than what has been planned. However, if I knew how many grays you had, I would feel more comfortable in doing so. If you don’t remember, please do not worry. I am asking just in case you do remember.

                          Again, thank you so very much for sharing your information about your scheduled scans this week. I will be praying everyday that they come out clear. Please God that they will.

                          Sincerely,
                          Affected

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