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Newly diagnosed stage 3b…

Forums General Melanoma Community Newly diagnosed stage 3b…

  • Post
    Wildcat99
    Participant
      Hope everyone is doing well. I’m a newly diagnosed stage 3b. I had a neck dissection 4 weeks ago to remove a golf ball sized growth on one lymph node and had many others removed (all of the others were clean). Plan is to lay low another few weeks given Covid and then regroup to discuss treatment options again. After initial meetings, I’m probably headed down the Opdivo path. My question to this group is regarding the use of radiation in the neck prior to receiving Opdivo…the doctors tell me it helps prevent the melanoma from coming back in the same area but doesn’t improve OS rates. So I’m trying to figure out if it makes sense to get radiation given the potential side effects. Any thoughts/advice would be much appreciative. Thanks for reading my post. Take care.
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        Bubbles
        Participant
          Sorry you are facing all these difficult decisions, Wildcat. Melanoma is tough. But, you do have options. My best and first advice is to make sure that you are seeing a melanoma specialist., or at least an oncologist who has taken care of many melanoma patients using immunotherapy. There is a steep learning curve on those therapies for patients and docs alike, as none of the current melanoma therapies were FDA approved until 2011 and even more recently for Stage III folks. You sound as though you have already gotten pretty up-to-speed, but here are some research articles and posts that you may find useful.

          Here is a primer I put together on current melanoma therapies: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Here is a post I recently put together on adjuvant therapy in particular: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuvant-therapy-for-melanoma-state-of.html

          Here are a zillion other posts on adjuvant therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant

          And finally, while we know that radiation alone is not particularly effective for melanoma, we have learned that when radiation is COMBINED with immunotherapy, the results are better than with either treatment alone. Here are a zillion posts, and though many are specific to treatments for brain mets, we have learned that what works in the brain works in the body as well: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

          I hope that helps and wish you my very best. Ask more questions as you have the need. This forum has many smart and caring peeps. Celeste

            Wildcat99
            Participant
              Thanks Celeste. The links were very helpful!
            Rob is grateful
            Participant
              Sorry to hear about your diagnoses. I was recently diagnosed stage 3a, and had my first opdivo injection today. You will find a lot of helpful information as well as inspiration on this forum. I can’t speak to the treatment plan you have, but I can certainly understand the stress and anxiety it causes. People diagnosed with this horrible disease have a much much better outlook than some one as few as 10 years ago. My only advice would be watching what you read online. Statistics and outcomes for melanoma found online don’t take into account the newest and most effective treatments. Always be careful to pay attention to dates of when articles and studies were published. Wishing you the best
              Steve33
              Participant
                I have a fairly similar diagnosis. Recent 3B. Primary melanoma near my ear. 1 lymph node metastasis in neck. Mine wasn’t particularly big, but I did have an extracapsular extension. I went forward with the radiation in January 2020. Definitely not a fun process, especially in the head and neck area. My main side effect was severe short term dry mouth for about a month, but have since recovered. Also lots of food and drink tasted funny. I now have to fluoride everyday, which gives me a gagging sensation. Also had some short term hair localized loss since my hair line on the back of my head was in the radiation area.

                There are some more significant long term risks with radiation, but the probabilities are very low. The most significant risk to my long term health is the melanoma.

                I decided to do it because my doctors recommended it and more importantly I wanted to aggressively FIGHT the melanoma with every weapon available. I also wanted to significantly reduce the risk of having another surgery in the sensitive head and neck area. Radiation is VERY effective for localized control.

                I am also on Opdivo treatment, almost half way through.

                Like you, I’m just beginning my journey with stage 3 melanoma. Who knows if I’ll beat it, but I sleep well knowing I’ve attacked and fought back as hard as possible.

                  Wildcat99
                  Participant
                    Thanks for sharing – this was very helpful. If you don’t mind me asking, how long after surgery did you do the radiation? also, are you doing the double dose of Opdvivo (once per month) or the every 2 weeks?
                    Steve33
                    Participant
                      I had surgery mid-November. Started Nivo in mi-December and radiation was in early January. 5 radiation sessions over 2.5 weeks. Agreed with the previous post that the mouth piece is the worst part, but bearable. Radiation sessions are very quick. About 15 minutes.
                    THMoore
                    Participant
                      Sounds the same as me. I was diagnosed stage 3B the first week of March. I noticed my neck was swollen and I had three different doctors misdiagnose me. In Jan. Went to MD Anderson in Houston and they performed surgery in late February. They weren’t expecting melanoma because I had no history of skin cancer. So I am a unknown primary. Mine was in my parotid gland in 1 lymph node. They removed nodes in my neck and parotid and all were clean. Total of around 40 nodes. After I healed they put me on 5 High Doses of radiation. 2 1/2 weeks. I just finished last Friday. My taste and saliva has really changed and I am weak overall. Just got off the phone with the oncologist and they want to see me when my throat heals, so basically the 15 of May. They are going to put me on Nivo for 1 year. 1 time a month. The hardest thing about radiation is the mask and mouth piece.
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