Can anyone share their experiences with T-VEC please? Starting soon.

This topic has 9 replies, 5 voices, and was last updated 3 years, 12 months ago by Mark_DC.

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- April 29, 2020 at 7:00 pm
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KAP715
Participant
Had a recurrence in my neck 9 months after a neck dissection and adjuvant pembro obviously hasn’t worked for me. I have a subcutaneous tumor right underneath the incision from my previous surgery. Can anyone share their experiences with T-VEC? That’s what my onc is recommending for the next phase of my treatment. Unfortunately PD-1 immunotherapy isn’t working for me.

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- - April 29, 2020 at 8:20 pm
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  Lucas
  Participant
  I had 3 injections of tvec into my left foot (very painful) for intransits. I continued on opdivo, but it wasn’t working by itself. The spots were disappearing, but after my 3rd injection the melanoma moved into my groin lymph nodes. So I stopped tvec and as a last resort did iPi/nivo. I then had a complete response almost immediately. I believe the tvec being in my system contributed to my response. In my opinion it’s amazing stuff especially in combination so I would continue immunotherapy also as this combo is still in clinical trials.
- - April 29, 2020 at 8:20 pm
  - Quote
  Lucas
  Participant
  I had 3 injections of tvec into my left foot (very painful) for intransits. I continued on opdivo, but it wasn’t working by itself. The spots were disappearing, but after my 3rd injection the melanoma moved into my groin lymph nodes. So I stopped tvec and as a last resort did iPi/nivo. I then had a complete response almost immediately. I believe the tvec being in my system contributed to my response. In my opinion it’s amazing stuff especially in combination so I would continue immunotherapy also as this combo is still in clinical trials.
  - April 29, 2020 at 9:01 pm
    
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    KAP715
    Participant
    
    Thank you, my doc wants me to do nivo along with the T-VEC so we have to see if insurance will approve that.
- - April 29, 2020 at 11:35 pm
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  Bubbles
  Participant
  Not a personal experience, but lots of articles about T-VEC if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=t-vec
  
  Hope that helps. I wish you my best. Celeste
  - April 30, 2020 at 1:17 am
    
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    KAP715
    Participant
    
    Thank you Celeste for all that you do! I’m a big fan of your blog!
- - April 30, 2020 at 2:15 am
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  Mark_DC
  Participant
  Dear KAP175
  
  I am a great fan of TVEC and/or intrlesionals. I have not posted my history but if you search my past posts i do write about my experience. Also TexMelanomex (?) who took intralesional rose bengal.
  
  In my case i had recurrence in my left calf after two surgeries. So this was the third time (I lose count!). Actually tow recurrences together. So they put me on pembro since surgery was not working. Pembro removed the smaller tumour but not the other one. It kept growing but really slowly. But in one year it grew from 1.5 cm to 3 cm. Next Step would have been a difficult surgery and a flap and a long time in hospital.
  
  I had psyched myself up for this but a second opinion said why no try tvec, one last chance. My doctor had mentioned this but recommended surgery. So it went to insurance and he was surprised that insurance accepted.
  So then i had to change hospital and went on tvec plus pembro every two weeks. The alternative was pembro every three weeks and pemnro every two – i would alsways be in hospital.
  
  At first the tumour grew slightly to anout 3.5cm but afteer that the fortnightly ultrasounds showed that it was slowly shrinking. After one year it went down to 1cm and then we had to give up also the tvec guy could not really see it on the ultrasound unlike the mri people. Then next scan the mri could not pick it up either. This was one year ago and since then a few dodgy scans but essentially no recurrence
  
  I think tvec plus pembro is a great idea for those of us who dont respond promptly to immunotherapy, have a light burden and where the tumour is subcutaneous and accessible. I think the tvec tells the immune system energixed by the pembro where to attack. My first few tvec gave me terrible fever, i worked throughout but i should have taken a day off work the day after the injection. Or worked from home. I am incredibly grateful to the oncologist who gave me this option. It has bought me time and may have saved my life. I was the first one he tried it out on, others with heavier burden did not succeed. But i think the combo (or another intralesional plus pembro)
  can be an amazing option.
  
  I think you may hqve a good doctor now he just needs to convince the insurance people but try hard because it might be worth it
  
  Good luck
  Mark
  - April 30, 2020 at 3:44 pm
    
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    KAP715
    Participant
    
    Thank you for the reply. I’m very hopeful that T-VEC will work for me. My onc says very good things about it! I’m excited to give my tumor herpes, it’s poetic justice!
  - May 1, 2020 at 1:06 am
    
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    Mark_DC
    Participant
    
    Do try to combine it with pembro or nivo. The insurance company may object but for me the tvec helped the immunotherapy work. It probably inflamed the tumour. Now I am kind of optimistic i might be done but with this disease you can never really say that as pointed out by the next poster who had a recurrence. Still the tvec must have done some good. For me the injection was not at all painful (i got used to all the jabs from so much bloodwork) but i did get severe fever (probably a good sign) and i think i lost lots of wieght as the pembro started to work and i lost my sense of taste (now restored fully for better or worse!). I think its an interesting choice and it really helped me
- - April 30, 2020 at 9:40 pm
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  maryb-z
  Participant
  I had 3 tumors in my right leg that responded well to T-Vec, in fact they were annihilated. Unfortunately a year later I had another tumor pop up so I am going on year 2 of Opdivo.
  As far as pain I’d say it was uncomfortable but the team in the room talked to me the whole time and that helped keep my mind off the injections. Best of luck to you!