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Sorry to say, I’m back.
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Sorry to say, I’m back.

› Forums › General Melanoma Community › Sorry to say, I’m back.

  • Post
    • September 21, 2017 at 12:35 am
    TexMelanomex
    Participant

      I wish this was a simple social call but I am back in the Melanoma mix after a short respite. I had a grape sized knot show up directly below my clavicle and back down to MDA today. I got the news that it was a node positive for mel…the blessing and the curse at MDA is that they result needle biopsies in about 20 minutes. CT first thing tomorrow to see what else might be going on and then discuss the battle plan with Dr. Ross and Dr. Amaria. Although I was quite content at Stage II, it looks like I have graduated.

       

      I'm assuming that surgery is on the near horizon, but I'm sure what they are going to recommend beyond surgery. Any thoughts gang? I know, I know, there are way too many variables based on the info I gave but my mind is spinning tonight and I will know soon enough.

       

      Although, I wish I was back here under different circumstances but even after a quick look through the most recent posts it was easy to see why this was such an inpsirational place 6 months ago.

      Tex

    Viewing 7 reply threads
    • Replies
        • September 21, 2017 at 2:09 am
        jennunicorn
        Participant

          Dang Tex, sorry you are back! You could have a couple of options. One being surgery and then adjuvant immunotherapy which there are limited drug options. Or directly to immunotherapy with all of the drug options available. Options will also depend on whether the CT shows anything else internally, which I will keep positive for you that it will not show anything more than this clavicle bugger! 

            • September 21, 2017 at 6:11 pm
            TexMelanomex
            Participant

              Hi Jenn! Never mind me for now, how are YOU doing? I updated at the bottom based on the CT results. I'm not entirely clear on the staging, maybe MDA did me a solid by upgrading the stage or maybe the abdomen is considered "distant" either way it looks like it is putting a few more treatment options on the table for me. You have done Pembro havent you? Any tips?

              Tex

              • September 21, 2017 at 6:36 pm
              jennunicorn
              Participant

                I am doing well, sitting at the "stable table" currently, which is better than other tables I could be at. Actually waiting for the tumor board to review my recent scan tomorrow and give their feedback about what they think about just surgically removing the last tumor I have that is stubborn or if I should stay on treatment for a while longer until the next scan. 

                I have not done Pembro but it is a great drug and the combo you mentioned below sounds interesting. I would certainly think about something like that myself if given the option. The one thing I have learned through this journey is that you can ask a million questions, get a million answers, do a ton of research, but at the end of the day it all comes back to what your gut is telling you to do. I've trusted my gut through this and it's doing alright for me so far.

                Sorry you've joined the stage 4 club, but what better time to join than when all the amazing treatments are available and even more promising ones are in trial. So many great options, meditate on them, and you'll know what is best for you.

                • September 22, 2017 at 4:05 am
                TexMelanomex
                Participant

                  Thats a good place to sit Jenn! How long have you been in this fight now?

                  • September 23, 2017 at 12:59 am
                  jennunicorn
                  Participant

                    It will be 2 years in October 

                    • September 23, 2017 at 2:41 am
                    TexMelanomex
                    Participant

                      In case no one has told you lately. You are a WARRIOR and a huge source of inspiration! Rock on Jenn.

                       

                    • September 21, 2017 at 1:59 pm
                    MovingOn
                    Participant

                      Wish (for you) that you weren't back. 6months seems to be about when recurrence is appearing lately. Let us know the treatment plan you pursue and how it progresses. Good luck to us all.

                      Danny

                      • September 21, 2017 at 2:05 pm
                      Marksa2570
                      Participant

                        Hey Tex,

                        I have no doubt you will fight this thing head-on and we will all be there for you.     Keep us posted.   

                        You are in my thoughts and prayers.   

                         

                         

                          • September 21, 2017 at 6:13 pm
                          TexMelanomex
                          Participant

                            Indeed I will! Thank you for the prayers and thoughts, you are great people!

                          • September 21, 2017 at 3:30 pm
                          adrianc
                          Participant

                            Sorry to hear about it.You said that back in June,they identified two nodes of concern .What was their size in comparision of the one you found under your clavicle? I mean it's weird they identified two suspicious nodes on the  June scans but not this one;  grape size is pretty big not to be seen 3 months ago,just wondering .Best of luck to you and keep us posted what route you chose to go.I think resection as long as its operable is possibly the  best way to go but of course it is yours and your doctors decision.

                            • September 21, 2017 at 3:31 pm
                            Bubbles
                            Participant

                              You may well be Stage III at this time, and while I wrote this primer perdominantly for Stage IV folks…it pretty much covers all the types of treatment you will probably need to be conversant in and able to discuss with your doctor.  Getting BRAF testing will be important as well.  http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/2017/08/melanoma-intel-primer-for-current.html  

                              I wish you well.  Celeste

                              • September 21, 2017 at 4:07 pm
                              iskitwo
                              Participant

                                So sorry you are have to deal with this! I use Dr Amaria and have been very happy. Not sure what they will have lined up for you but you can bet they will have a good game plan for you to pick from. She gave me a Few choices at Stage 3a.  IPI and watch and wait. I have made it almost a year into my watch and wait. Hang in there!!

                                Prayers from this Texas Girl!!!

                                  • September 21, 2017 at 6:14 pm
                                  TexMelanomex
                                  Participant

                                    Thats great news Texas Girl! Prayers back at you and thanks!!

                                  • September 21, 2017 at 5:57 pm
                                  TexMelanomex
                                  Participant

                                    Thanks to all of you, very uplifting! So things took a slightly different turn today after the CT results came through. A few more lymph nodes involved in the abdomen so I received the expedited pass to Stage IV. While the name of the stage in and of itself is ominous I quickly realized that a host of additional tx options opened up to me with this name change!

                                    Previously when they identifed the "problematic nodes" the biopsy was negative, this subclavicular node is a recent development over the past month and half. It started as a soft, kind of tender lump, and in the past two weeks or so became rock hard. Dr. Ross said this was unusual since it should not be part of the lympathic drainage on that side, but rather it likely means that Mel made it into my bloodstream and found its way there by the blood stream.

                                    I was fortunate not to have findings in the organs, just lymph thus far. Dr. Amaria presented me with numerous options but her clear leaning was toward Keytruda or Opdivo, or a trial using PV-10 and Keytruda together. We discussed the Ippy/Keytruda combo and I didn't like the way she was selling side effects so I think I'll put that one on the shelf for now. I'm apparently not the best candidate for T-VEC given that my BRAF mutation is an unusual one. I darn sure didn't like the sound of traditional chemo, and radation wasn't on the table. She also seemed less optomistic about targeted therapy given what she described as a high rate of recurrence.

                                    I'm really leaning toward this PV-10 – Pembro trial…with PV-10 injected directly into the tumors/nodes and Pembro hopefully peforming the mass immune mobilization work…any thoughts on this??

                                    Still in a bit of shock, I guess I took the 6 months of NED for granted and really thought I had this thing whooped (I'm silly like that sometimes). This part I do know, its game on. Ramping up my nutrition, exercise, meditation, the whole nine yards in preparation for battle…ok maybe a little bit of drink tonight, but then its all about battle prep!

                                    Tex

                                      • September 21, 2017 at 9:09 pm
                                      BrianP
                                      Participant

                                        Tex,

                                        Sorry man.  I like your "game on" sentiment.  Have no doubt you will give this 100%.  PV-10/Pembro sounds interesting to me.  I also like nivo/ipi even with the severe side effects but you could always go to that if PV-10/Pembro doesn't do the job want it to do.  

                                        I see Dr Tawbi at MDA and he really likes this trial:

                                        https://clinicaltrials.gov/ct2/show/NCT03131908?term=%22melanoma%22+%22MDanderson%22&recrs=a&cntry1=NA%3AUS&state1=NA%3AUS%3ATX&rank=3

                                        You'd probably be one of the first human guinea pigs so it's a little more risky but Dr. Tawbi was really excited about this trial.

                                        Good luck.

                                        Brian 

                                        • September 21, 2017 at 10:37 pm
                                        TexMelanomex
                                        Participant

                                          Thanks Brian! I wil definitely take a look at it and consider options. This is going to be a 'deep think' weekend. I have to say that I am getting more and more optimistic about the PV-10/Pembro trial and I have a very good, very smart, physician friend to talk it over with tonight. Hes not an ONC but he is board certified in multiple areas of medicine so not only is he a phenom, but I trust him quite a bit with medical decisions. I really appreciate you sharing that trial info with me.

                                           

                                          Best,

                                          Tex

                                        • September 22, 2017 at 5:28 pm
                                        MovingOn
                                        Participant

                                          Hi Tex, can I ask if you will definitely get PV-10 in the trial?

                                          I ask because I'm considering a T-VEC plus Pembro/Keytruda trial in which only 50% of patients get T-VEC and 50% get placebo (all patients get Pembro/Keytruda). I want to get an intralesional and Pembro, so I'm not thrilled about only having a 50% chance of getting TVEC in that trial.

                                            • September 22, 2017 at 6:54 pm
                                            TexMelanomex
                                            Participant

                                              Hi moving, I am fairly certain that everyone will get both because I believe it still a component of Phase I, in the Phase II they begin to randomize into Pembro + PV 10 or Pembro only + placebo. I wish I could say 100%, but there was no mention of randomization when I signed the consent and they talked at some length about the PV-10 injections and what to expect. Once I get 100% certainty on this I'll post again. I would have considered a trial like yours except I have the wrong BRAF mutation for best T-VEC results (or at least thats the way it was explained to me).

                                               

                                              Best,

                                              Tex

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