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Decision on treatment?
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Decision on treatment?

› Forums › General Melanoma Community › Decision on treatment?

  • Post
    • October 26, 2017 at 4:18 pm
    adrianc
    Participant

      Currently I am facing the following decision: lymph node surgery risking lifelong lymphedema or injection of much less  invasive TVEC vaccine directly into the lymph node .If it's not working, surgery.Has anyone done TVEC as a mono treatment for positive lymph node and did it work for you?Any feedback would be appreciated, thanks a lot.

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        • October 26, 2017 at 5:51 pm
        Nashvillian
        Participant

          I wish I would have taken the time to investigate more on this. When I was first diagnosed 3 months ago I just said do whatever get it out of me. No I am still healing from surgery 2 months ago. Had a huge infection and none of the nodes came back bad except the sentitnel one that we saw on pet scan anyways.

           

            • October 26, 2017 at 7:31 pm
            adrianc
            Participant

              Thanks for your response.Get it out of me is my first instinctive reaction  too;yet on a second thought an invasive surgery and facing the risk of permanent lymphedema is not appealing prospect to me.They still don't have enough compiled data to assess  how effective the TVEC is. There are some folks on here that have shown amazing results on it after  other treatments  did not work for them.So it's a toss.Did you develop lymphedema with 34 nodes being removed?Thanks again for the input.

              • October 27, 2017 at 2:46 am
              ed williams
              Participant

                If you are interested here are two links from a few months ago on this topic.https://m.youtube.com/watch?v=q_GtNxxdXdU http://www.nejm.org/doi/full/10.1056/NEJMoa1613210

                • October 27, 2017 at 2:47 am
                ed williams
                Participant
                  • October 27, 2017 at 12:41 pm
                  adrianc
                  Participant

                    Well l from what I understand the radical lymphadenectomy does not improve the OS so with both radical and selective lymph node dissection melanoma can come back or might not.My medical oncologist said it always comes back.Leaning towards selective lymph node dissection since not guaranteed  the TVEC will work /50-50 chance/ Has anyone done the TVEC vaccine  as adjuvant therapy post  lymph node resection?Txs for sharing the links, Ed.

                    • October 27, 2017 at 9:48 pm
                    ed williams
                    Participant

                      Hi Anon, one of the Oncologist in the video I shared above is the world leading expert on T-vec. Dr. Andtbacka is from the Huntsman hospital in Salt Lake City if I am not mistaken. Try to get a hold of him or his team for more information on T-vec. Best Wishes!!!Ed

                    • October 27, 2017 at 7:05 pm
                    Threefitty
                    Participant

                      If you are looking at participation in a clinical trial, then you need to look at the trials' qualifications. Some only want you post CLNR and that's that.

                      Lymphodema is obviously some serious stuff, but are you at high risk for the worst of it? I still golf, but don't use a shovel anymore. Which is just fine. I am lucky not to be overweight or mobility limited.

                      I'd have given my left testicle to get into a clinical trial to get a chance with these new drugs, so one set of axial lymph nodes seemed like a real bargain at the time. Still does. TVEC was not offered to me. 

                      • October 28, 2017 at 2:28 am
                      Bubbles
                      Participant

                        I have had two CLND's….to both armpits…one in 2003 and the other in 2007 and have no lymphedema.  That said, I am lucky….and some of the views about the necessity, or effectiveness, of that surgery have changed over time.  Here are about a zillion reports on T-VEC: 

                         http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=t-vec&max-results=20&by-date=true

                        Here is a review of current adjuvant therapy options, though not all are always available to the patient (sadly)…though that, too – is changing: 

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/adjuvant-treatments-in-melanoma-they.html  

                        Hope that helps.  I wish you my best.  Celeste

                        • October 28, 2017 at 1:40 pm
                        guynamedbilly
                        Participant

                          I'm going to Vanderbilt.  They changed their standard of treatment, at least for my stage, to not recommend CLND, but I did have a SLNB.  I'm glad that I did for two reasons.  My insurance refused to cover the cost PET scans until they received evidence of metastasis, which I had one micro in one node.  The second is because they found evidence of metastasis, I was able to get Nivo approved for adjuvant therapy.  I think that's one of the best decisions I've ever made.  I have been lucky with no signs of lymphedema.

                            • October 28, 2017 at 2:14 pm
                            Bubbles
                            Participant

                              Yes, a SLNB is viewed as essential for staging after finding thicker cutaneous melanoma lesions and has very little risk of lymphedema.  If you were to forego the SLNB, how would you ever know if you were Stage 3 or not?  How would you know what line of treatment and follow-up care to pursue?  You wouldn't!  Additionally, your point regarding insurance coverage in very important.  Coverage for treatment and needed scans would be non-existant without proof of metatasis to a node.  Here's a post that covers a lot of ground re: CLND and SLN –
                               http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/clnd-complete-lymph-node-dissection-in.html  

                              Wishing you all my best.  Celeste

                              • October 28, 2017 at 7:36 pm
                              adrianc
                              Participant

                                Many thanks everyone for your input an insights.I already made a decision to go for the  selective lymph node resection as recommended by my medical oncologist in a hope to reduce the risk of lymphedema.Of course the there is still a chance lymphedema might happen but surgery was the obvious choice as TVEC only works for half of the patients.Thank you once again for taking your time,much appreciated.God Bless!

                                • October 31, 2017 at 9:57 pm
                                CCL60.57
                                Participant

                                  How long have you been having the Nivo adjuvant therapy?  What types of side effects are you having?  I am starting adjuvant therapy on November 15th with Nivo.  I'm scared out of my mind.  I'm just wondering what type of effect it's going to have on my life.  I'm 60 years old and diagnosed 2 months ago with SLNB, Stage IIIa.  Was BRAF negative.  Thanks in advance.  

                                • October 28, 2017 at 9:31 pm
                                SDFun
                                Participant

                                  Hi

                                   

                                  I am treated at teh Moores cancer center in San Digo. I have stage IIIb with 1 positive sential lymph node. Both my surgeon and oncolgist-melonoma specialist said that there noew stanrd of careis not to remove any additional lymph nodes becasue they see significant difference in dease progression. 

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