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TVEC

  • Post
    Raeofsonshine
    Participant

      Hi there!
      Any thoughts from anyone with the same sort of history would be so greatly appreciated.  Had 2 rounds of Ipi/ Nivo late last year.  Due to a plethora of problems – as we have all faced on treatment- we stopped infusions.  Last treatment was 12/2017.  Scans in May showed great response- in transit mets in leg – 7 or more- had shrunk or disappeared completely.  Fast forward to scans in August and I have 2 new growths in the leg, confirmed with a core biopsy- active mel.  For real?  BRAF neg so looks like the only option I get right now is TVEC.  This is only because my doc does not want to pull enough tumor together for the TIL trail and still leave plenty in my leg for monitoring.  I asked if I could just "wait and see if it continues to grow" and he does not want me to wait.  Thoughts from those that have had the TVEC injection?  Should I be getting a 2nd opinion?  My doc is at University of Colorado Melanoma Clinic so I know I'm not dealing with someone that isn't abreast of current options and information. 
      Thank you all and I hope you all have a great weekend and stay strong!
      Ann

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        Mark_DC
        Participant

          Dear Ann,

          I saw your post so thought I should log on and reply.

          I have been on TVEC plus keytruda since last November and in my case it seems to help.

          I developed in transits on my left leg two years ago – they put me on keytruda and that solved one of them but the other one persisted, growing very slowly. After one year of slow growth my doctors were recommending surgery. But after a second opinion we decided to go for TVEC (but keeping keytruda too). This had always been in the back of all of our minds as an option, but my doctors did not think my insurance would approve the combo. But insurance did, after appeal, and it seems to be working. I dont want to jinx it but the tumour started to shrink after three months (it probably grew at first) and has been slowly getting smaller.

          I like the TVEC approach – it inflames things to tell the immune system where to attack. Kind of a weird thing to do but makes sense. I would try it in conjunction with keytruda though. Your side effects from immunotherapy may have been because of the ipi so you may be ok with pembro/keytruda.

          With my first few combos I had terrible fever, I should have taken a day off work after treatment (not just day of) – keep this in mind but I think 1-2 days sick leave should cover it, if needed. The process takes time as they have to measure your lesions, work out how much to inject, then inject with ultrasound guidance. THey have to unfreeze my meds (my hospital does not have the right fridge?!). You get ultrasounds every 2 weeks so you can see whats happening and if things go bad then change plan rather than have to wait three months for the next scan.

          I think in my hospital I am one of the first to be doing this. there is another patient in my hospital and dont think the results there are as good as mine are so far. but in my case – which seems similar to yours, regional intransits and not too many tumours – it has made a huge difference. but see if your doctor thinks combining with keytruda is possible too

          good luck Mark

            Mark_DC
            Participant

              PS second opinions are almost always a good idea. they either suggest new approaches or help make you more comfortable with what you decide. but with a melanoma specialist of course.

              Raeofsonshine
              Participant

                Thank you Mark!  My doc explained it all very well and yes the process is a "day trip" but hopefully worth it.  Thakn you for explaing the side affects.  I have felt human again since the start of summer and not really looking ofrward to feeling like dirt so hopefully the flue like symptoms only last for a couple  of days.  

                Thak you again! 

                Mark_DC
                Participant

                  Hi Ann — make sure to ask whether they can do TVEC plus keytruda. Thats what seems to be working for me. To me it seems that ipi/nivo worked for you, then you stopped taking it, then you got local progression later. so it could be that nivo alone (or keytruda alone) would be enough. if you go the tvec route then why not hedge your bets and combine with keytruda. in my case i think the tvec woke up the keytruda (which had worked on one tiny lesion but not on the second), and told it what to attack.

                  one other reason i was interested in this treatment is that the doctors who suggested it realised that their hospitals did not offer it (you need a sterile area for the injection). so they had no self-interest in proposing it and I actually had to move hospital to get this done.

                  good luck Mark

                ed williams
                Participant

                  Hi Ann, here are a couple of links about t-vec. Dr. Andtbacka of Huntsman in utah is the world leading expert in this treatment. https://www.onclive.com/conference-coverage/smr-2017/intralesional-combinations-pave-the-way-for-melanoma-treatment         https://www.youtube.com/watch?v=rIsJOfW4gLM

                  MelanomaMike
                  Participant
                    Hi Ann! Just a quick note to say were behind you, in front of you & at your side! If TVEC is in your cards Do It! Assuming you may have a predetermined good response to it, i’ve known that TVEC is a re-engineered version of the Cold Sore Virus!! What a trip huh?..good vibes your way sis!, i too am “up in the air” for my next treatment plan, we will be okay!….
                      Raeofsonshine
                      Participant

                        Thanks for positive vibes Mike!  Initally I had researched your posts because for some reason I thought you had done these.  YOU TAKE CARE OF YOURSELF and keep going!  

                        MelanomaMike
                        Participant
                          Hi Rae, you may be thinkin of my buddy (and fellow MRF brother) “Tex”(texmelanomex)?? he did the PV-10 version wich i “think” is simular? He had a neck tumor & PV10 cleared that up real good! Plus he drank up (and still is) some delicious bags of Pembro for his tumors in his abdomen, also NED!.. no, im still “Up indah Air” right now, my Nivo is halted for the time being pending 2nd opinion 😉
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