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Affected

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      Affected
      Participant
        Hi Mike, I haven’t posted in a long time. My husband has finished his 1 year long immunotherapy and his PET scans were all clear. Of course we are all relieved and happy, but you and so many in this support group have made it possible for me to hang in there. I do so want you too to come through with this most recent battle with the growing and new melanomas. Please keep fighting them. I will keep praying that you beat every single cell of it.
        With love and best wishes.
        Affected
        Participant
          Hi Lucy, Thank you for posting. My husband is in a very similar situation to yours. He was diagnosed with melanoma on June 19th of this year (2109). In late July, he had a tumor (also not thought to be primary) removed from his parotid gland (main salivary gland) together with 51 lymph nodes from his neck, 2 of which were involved. He underwent daily radiotherapy for 6 weeks, and is now on adjuvant immunotherapy (Opdivo) for a year. He hasn’t had any scans whatsoever since his surgery and will be having CT scans done on Jan. 8th. We were assuming they were to be done on his whole body, but now after reading some of this forum’s posts, I am not too sure. I am going to call the hospital to find out what is actually scheduled, but before doing so, I wanted to arm myself with some knowledge as to what he should ideally be getting. Some people seem to get MRI’s, others PET scans, and still others like yourself CT scans. I will be posting about this matter, so in case you want more information, I just wanted to let you know so you could keep tabs on any responses I myself get. I am very nervous about my husband’s scans on Jan. 8th, given that they will be the first since his surgery and I am praying fervently that they will be clear. Thank you for posting; examples of cases similar to my husband’s that are positive are giving me much needed hope at the moment that there really is a good chance his scans will be clear. Thank you very much. Sincerely, Affected
          Affected
          Participant
            Hi Tex,

            I’m originally from Texas myself. I’m so happy to read about you being NED for 2 years!!!!! On January 8th, my husband is having his first Cat scan since they removed his tumor from his parotid gland in July, and I so want to come back onto this forum and report that he has been NED for almost 6 months. Thank you very much for posting. I didn’t realize how anxious I was until getting back onto this site and letting the flood gates open and in so doing, allowing my fears to just flow with the tears. I’m feeling so much better. Thank you so much and I pray that you will continue to be NED for many many many …… years to come. Sincerely, Affected

            Affected
            Participant
              Hi Polymath,

              Thank you very much for posting. My husband was diagnosed with melanoma in June and had his tumor from his parotid gland removed in July. It is so helpful to hear about miracles, especially at this time of the year. He has finished his radiotherapy and is on adjuvant immunotherapy for a year. He will have his first CAT scans since his operation on January 8th, and I am praying that there will be no sign of metastasis as there was some lymph node involvement. ie. I am praying for a miracle. Again thank you so much for posting. I wish you good health for many many years to come. Sincerely, Affected

              Affected
              Participant
                Celeste,

                And here’s to at least another 26 years! T H A N K Y O U for all your support, knowledge, time, and love.

                Affected

                Affected
                Participant
                  Thank you MelMel for posting the link. My husband is about to finish his 6-week radiotherapy treatment this week, and after his radiated skin heals, he will probably be getting an MRI or PET scan. In case the scans are not clear, it is always nice to know that there are possible new treatments available.

                  Sincerely,
                  Affected

                  Affected
                  Participant
                    Hi Sks2019,

                    Although it is my husband who has melanoma, my own liver stats are off the charts. I’ve had an MRI and luckily no sign of any tumors. I have been told that I just need to eat better, and since I am not an alcohol drinker, that means cutting out sugars and fats. I’ve taken that on board by cutting out my habitual eating of sugary sweets and have lost much needed weight; I feel much better physically now. Someone told me to notice that the much used phrase of “the essential proteins and fats” does not include “the essential carbohydrates”. I have therefore begun to do some research on sugar, and as of yet I still need to find a paper that points out any health benefits from our intake of it. As diabetes also seems to be one of the side effects of taking immunotherapy, my husband has cut down on his intake of sweets just in case. Hang in there. Your mother is very lucky to have such a wonderful daughter.

                    Best wishes,
                    Affected

                    Affected
                    Participant
                      Hi Cindy,

                      My husband completed 3 weeks of 6 weeks radiotherapy yesterday. He gets 2 greys (measurement) per day every weekday for what will be a total of 60 greys once it’s all over. In late July the surgeon removed his parotid gland (salivary gland) in addition to 43 lymph nodes of which 2 were involved, thus the radiation is directed at his lower cheek and neck area. Because the area is so compacted and there are other organs in this area such as the thyroid which they don’t want to radiate, they make the bespoke mask so as to help you not move when they begin the radiation. My husband said that it was a bit claustrophobic at the beginning, but that you get used to it quickly. Knowing what to expect really helped him though. He viewed photos of the mask on the internet before going to get fitted. You may want to input “IMRT radiotherapy mask images” or “VMAT radiotherapy mask images” in your internet search engine to get a better idea as to what to expect. Besides the radiotherapy, my husband is also getting immunotherapy in the form of NIVO once every 2 weeks for a year at a dose of 3mg/kg. At yesterday’s appointment, the doctor was surprised at how well my husband’s throat was doing because throat pain is one of the painful side effects of the radiotherapy. My husband religously rinses his mouth with baking soda and water solution SEVERAL times a day, puts some anti-irritation drops into his mouth that the doctor gave him, and will apply 99.9% aloe vera gel to his cheek and neck MANY times a day, especially right after the radiation when he feels the area gets very hot. I don’t know if those are the reasons why he isn’t suffering the pain throat that the doctor sees in most patients, but thought I should mention them in case they are contributing to his favorable condition (especially because they are steps that you can easily do if you choose to do so). Also based on Bubbles’ own experience of remaining active and doing exercise during her melanoma period, my husband is trying to go to the gym every other day in order to keep his whole body as healthy as possible.

                      Wishing you the best,
                      Affected

                      Affected
                      Participant
                        Hi,

                        The Yervoy/Opdivo combo seems to be quite effective for some people. I hope you may be one of them.
                        I’m so sorry you are going through this.
                        Affected

                        Affected
                        Participant
                          Hi Mike,
                          I’m glad to hear you are doing well. It had been a while.
                          Today is the half way mark of my husband’s 6 week radiotherapy treatment. He’s doing better than expected.
                          Wishing you the best, and keep us posted about your progress.
                          Affected
                          Affected
                          Participant
                            Hi Mark,
                            Thank you very much for your reply. Your advice has helped me tremendously. My husband’s rash has been diagnosed as pityriasis rosea and according to the dermatologist, it is not related to the Nivo. Therefore he was able to get his 6th infusion. He also got some lotion whose name I will jot down in the profile so that others may refer to it if need be. Thank you for being there for us; we feel good about 2020. We made it through our first year of melanoma with this forum’s help, and somehow I feel the goodness and kindness emanating from this support group is better than any immuno out there. I sincerely wish you all the best and will pray for your victory against melanoma. Sincerely, Affected
                            Affected
                            Participant
                              Thank you soooo sooo much Tex for your reply, especially during this holiday period. I’m in hospital at the moment with my husband. He has a very bad rash all over his body. Began 6 days ago. We’re still waiting to see the oncologist, but the nurse who has already seen him thinks he won’t be able to get his scheduled biweekly nivo treatment tomorrow. She’s grading the rash as a grade 3 Adverse Event. When you say you were getting the CT scans while engaged in treatment, did that treatment include nivo or any other immunotherapy? Could it be that the doctor doesn’t want to schedule scans until my husband has had more Nivo treatments? So far he has had 5 biweekly infusions of Nivo. He began in mid October. Did you ever have a rash? I’m scared that if they give him oral steroids, that that may exclude him from the one melanoma trial here in Ireland which is joint treatment with nivo and NKTR-214. Was not having had steroids a prerequisite for the trial your on? I’m so sorry for all these questions. 2 friends passed away just this month from cancer. My phone is about to go. Thank you so much for your reply.
                              Sincerely, Affected
                              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

                                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.

                                  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

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