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Stage 3 choices
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Stage 3 choices

› Forums › General Melanoma Community › Stage 3 choices

  • Post
    • January 4, 2018 at 8:26 pm
    Tracyyy
    Participant
      Hi all, my mum was diagnozed with melanoma in April 2013. Until the end of November all the regular scans were clear, then my mum felt an enlarged lymph node in the groin. Last month they removed it surgically and the biopsy results came back as melanoma in 3 of 6 nodes. The surgical team suggested PET scan, then local radiation in the groin and immunotherapy. However, the melanoma specialist we are seeing does not agree and suggests watch and wait and scans every 3 months. The only approved treatment for stage 3 in my country (Bulgaria) is interferon but he is against it. I know about the FDA approved treatment and I am so dissapointed that our options are so limited here…I know that watch and wait is also an option but I prefer us to do anything we could. I have read so much until now, even the doctor today asked me if I studied medicine, but I think being informed is the key. I also emailed some clinics in Israel as they apply some of the treatment approved in the US.
      So has anyone been trough radiation or watch and wait for stage 3? I known it is an individual choice but I will apreciate some advice. I also know that there are many stage 3 and 4 survivors here which gives me hope.
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    • Replies
        • January 4, 2018 at 9:12 pm
        Toby0987
        Participant

          I’m 3b from feb 2013 in US. I go to the Mayo Clinic in Minnesota. My onc offered me interferon back then but recommended against it-he said I’d be sick for a year and it statistically would add a year to my life. I chose watch and wait. If immunotherapy would have been offered I would have jumped on it. I’d recommend you go to a country that offers immunotherapy. I turned down the radiation-the onc said it was like hitting a fly with a sledgehammer-too much damage for the benefit. 

          • January 4, 2018 at 9:36 pm
          Calynda
          Participant

            I was diagnosed as stage 3b in 2013.  We chose to monitor as the options available were interferon, clinical trial and advanced bio-chemo.

            I lapsed with my monitoring due to lack of funds, divorce and life in general.  I’m stage 4 now and have been doing great for the past year.  I’ve had a few complications, but will be starting immunotherapy by the end of the month (I’ve been taking an oral targeted therapy Tafinlar/Mekenist for the last year) and it’s done a good job with minimal side effects.

            I've had radiation on my brain… both targeted and whole brain.  I was tired and had a little radiation rash.  The biggest side effect from that was dry mouth.  I can’t comment on radiation effects in other areas though

            • January 4, 2018 at 10:57 pm
            Bubbles
            Participant

              Hi Tracyyy.  Sorry for what you and your mom are dealing with.  There are plenty in the state who do opt to "watch and wait" for Stage III melanoma.  Surgery itself is a treatment.  And that is not a bad thing.  It sounds as though you have educated yourself well regarding melanoma care.  However, I put this over view of melanoma care together recently and perhaps you will find it helpful:

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

              I wish you and your mom my best.  She has a great advocate in her corner in you and that is worth more than you know.  Celeste

                • January 5, 2018 at 10:17 am
                Tracyyy
                Participant

                  Thank you all for the replies.Toby, thanks for the advice and I hope that you wil have many many years of NED. Calynda, I am glad that you have been doing great for the past year and good luck with further immunotherapy. Celete, thanks for the kind words. Your blog is wonderful, I find all the information very helpful.

                  • January 7, 2018 at 8:17 am
                  obtu.bt
                  Participant
                    Hi Tracy,
                    I am in Turkey and also I am a 3c patient. Till now,I had complete lenf node removal then radiotherapy and 4 doses of ipi(yervoy). Thanks to all people in that forum I learn and I apply. Now, I am seeking a lab to test and see my pd1 level. In case it
                    • January 7, 2018 at 8:19 am
                    obtu.bt
                    Participant
                      It is lower than 1% it does not make sense to use opdivo. So next step will start once we check it. You can apply all those therapy in Turkey as it is 5-6 hours of driving distance but it is very expensive
                      • January 7, 2018 at 5:23 pm
                      Tracyyy
                      Participant
                        Hi obtu.bt, may I ask you in which clinic in Turkey you received treatment? And also how expensive it could be? Thanks for the advice and wish you stay NED and good luck with your treatment!
                        • January 7, 2018 at 6:08 pm
                        obtu.bt
                        Participant
                          In some hospital you can take treatment of like yervoy or opdivo. You just need to have a oncologist who will ask for it. Yervoy application depends on kg of the patient, opdivo is also similar. For my case 250mg of yervoy was about 8.000 usd per application. For the application and test you should consider to spend about 350 usd each time.
                          • January 8, 2018 at 1:47 am
                          kst
                          Participant

                            I believe Nivo has a much better rate of success than Yervoy regardless of PD-L1 expression. The following article and chart on page 4 shows progression with +/- 5% expression.

                            http://www.melanomaimi.it/attachments/article/521/63.Adjuvant%20Nivolumab%20nejm.pdf
                             

                            • January 8, 2018 at 2:31 pm
                            obtu.bt
                            Participant

                              hi Kst, you are totally right but the main point if it is lower then %1 — this is why first I will go for a test and see my levels.

                            • January 8, 2018 at 11:07 am
                            Tracyyy
                            Participant

                              Thanks guys. Kst, I find the article very helpful. I lean more to being proactive, especially for stage 3C. /They did not tell us A,B or C, but since 3 of 6 nodes are positive it makes me think it is rather 3C/. Radiation and immunotherpay seems a reasonable option, but we will consult more specialist for sure. Currently waiting for a reply from Sheba clinic in Israel. What bothers me is that radiation and immunotherapy was suggested by the board of surgeon oncs which are not melanoma specialists. I know it is a tricky disease, but what makes our struggle much harder is that our country is small and far away from innovative treatment due to lack of funds and unreasonable political interests. I am so scared….

                                • January 8, 2018 at 2:50 pm
                                obtu.bt
                                Participant

                                  staging: normally if it is more then 2+ node it is 3C.

                                  Would like to have your update about Israel, in that board there are also people from Israel. Try to find them.

                                  In case you think about Turkey I will try to help you but probably a special clinic for melanoma would be a better chose.

                                  keep in touch.

                                  If you want to send me private mail you can send me via: [email protected]

                                   

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