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To TVEC or wait for TIL, that is the question

Forums General Melanoma Community To TVEC or wait for TIL, that is the question

  • Post
    guynamedbilly
    Participant
      Greetings all, been a while.  If anyone has experience with TVEC, I’d appreciate your opinion.  I’m a stable stage 4, and have been pretty stable for mostly two years now.  I’ve had many different treatments, almost always with mixed results, so my goal is to kick this into overdrive and get TIL and I’ve been waiting for that since before last summer.  The problem is MDAnderson’s TIL program has been on hold since last year, in case you didn’t know, apparently they had some staff changes and then because of COVID it was paused.

      I am trying to get set up at another hospital that also does TIL, but it’s taking a while. I’m currently on Nivo after coming off another intense trial last year.  I was given the option of trying TVEC+Pembro while I wait for TIL  I’ve already been poked a lot through various trials and it’s not fun, but I’ll do it if it’s a good option.  The problem is none of my tumors are especially large or close to the surface, except for one.  They are almost all in or around organs, so each injection would have to be CT guided.  The clinic I’ve been going to for NIVO is not capable of doing this treatment, so I’d have to get set up at another hospital and Dr.  I do not expect it to be curative, but it might buy me more good time before TIL is available.

      My hesitancy to do it is because I have quite a few tumors and it’s my understanding that they inject one of them at a time every 3 weeks until they hopefully go away and then move onto the next tumor.  That sounds like deep injections and CT scans every 3 weeks for the rest of my life.  I’m not sure I like the sound of that.  MDAnderson says there are people working on getting TIL up and going, but no exact timeline.  My Dr. had thought it would be before now, in early summer.

      So are there any TVEC advocates who would like to try to convince me that it’d be a good thing for me to try?  I’m up for trying anything effective, I just don’t especially think it’s effective enough compared to TIL, which is my white whale right now apparently lol.

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    • Replies
        Mark_DC
        Participant
          Dear Billy,

          I am a TVEC+pembro advocate, but I was in a different situation than yours. I only had 1-2 tumours, all local to my lower left leg; pembro dissolved one but the other kept growing, albeit slowly (probably doubled in size in one year). I was going to have to have a third surgery but instead a second opinion recommended adding TVEC (we already knew this was an option) so when the insurance approved, we went for that. After a couple of months the combined treatment started to work and after one year dissolved the tumour, we think.

          I thought my lesion was close to the skin but actually it was a little way below, close to the muscle, so my TVEC injections were ultrasound guided. I think at the end the MRI kept detecting tumour but the ultrasound did not, so it was not clear how to inject. In fact this had been a problem for a while as it had become hard to see the tumour on the ultrasound. While I dont have a profile you can read about my experience from my other posts.

          My personal bias is that TVEC is good for low tumour burden but less good when many tumours, although you can hope for some abscopal effect. Or perhaps combined w pembro the TVEC kicks the pembro in and then the pembro attacks the other tumours more effectively too. My understanding is that you can inject many tumours simultaneoulsy (not sure about the cost though as it is expensive sadly). Am not sure how practical this is if you needC CT or MRI guidance, as opposed to ultrasound.

          Do any of your doctors recommend adding TVEC, or perhaps a second opinion? If combined w pembro may be hard to get the insurance to cover – I ran into difficulties a number of times but my doctor appealed and it was accepted. There are trials of other intraslesionals too, again I like the idea when combined w pembro. If you are looking to buy time (ie the alternative is just continuing pembro while waiting for TIL), then I dont see how adding it can hurt. What about other approaches like LAG3 which came out of ASCO (what does your doctor think?)

          In short I am a TVEC (plus pembro) fan (and if your tumours are small maybe TVEC can give the pembro the extra push it needs?); would be much easier if you can do it with ultrasound only (but if they are small then may be hard to find); you can inject many at a time; not sure about insurance; what about trials of other intralesionals or other options?

          good luck Mark

            guynamedbilly
            Participant
              Thanks Mark.  There are other trials they are looking into for me as well that I’ll hear an answer about this week, GPER and Dragonfly.  Not sure if I’ll qualify yet.  I haven’t asked about the LAG3 news as I hadn’t seen that yet.  Thanks for pointing it out.  I’ll email them about that.  I think your assessment is right, TVEC is better for lower burden.  I think I’ll begrudgingly end up giving it a try though if these other trials or TIL don’t work out right now. Le sigh
            Mark_DC
            Participant
              Billy please keep us posted on any trials you enter. Please dont take TVEC (plus pembro?) begrudgingly – I went into it optimistically (perhaps too much so), and for me after one year of slow progression but no spread on pembro, it started to work (took one year so not so fast) and I could finally see immunotherapy working. I hope you dont have too many tumours. If they are small then may be hard to locate and then hard to inject – my surgeon using ultrasound disputed the MRI findings towards the end, as he could not see what the MRI scan was seeing. I am very grateful for TVEC and I know Texmelanomex had rapid results using rose bengal with pembro. No need to sigh !! (The only advantage of the new forum format is these emojis so why not use one!!)
              Bubbles
              Participant
                I don’t have an easy answer to your question, Billy.  But, I do have a ton of info on intralesional therapy if you are interested.  I’ll link a post I put up today as my start on reviewing posts out of ASCO this year.

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2021/06/intratumoral-or-intralesional-therapy.html

                Hope that helps.  I wish you my best.  C

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