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T-Vec seems to have worked…sort of
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T-Vec seems to have worked…sort of

› Forums › General Melanoma Community › T-Vec seems to have worked…sort of

  • Post
    • March 26, 2019 at 1:04 am
    Julie in SoCal
    Participant

      Hi there friends!

      Just saw the Rock Star and his band at St Johns and the general consensus is that T-VEC seems to be doing something.  The two Mela-critters seem to be softer and smaller.  So the plan is to wait another month or so and see if they go completely away.  T-VEC I take all my trash talking back ;-).

      On another front, it also seems like I now have some kind of  asthma like irritation in my lungs.  I had a CT so we ruled out any further recurance of NSC lung cancer, but I have a continual barking cough and can't take a brisk walk without losing my breath and coughing.  So the plan is to hit it with an inhaler and oral steroids.  I'm a bit of a crazy person on steroids but anyone can do anything for 6 days…  This is the plan anyway.  

      Roids start tomorrow :-0 I should attach a warning label to myself…

      So this is where it's at with me.  Thanks for all your love and support.  This is one awesome group!

      Shalom!

      Julie

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        • March 26, 2019 at 1:17 am
        Mark_DC
        Participant

          Dear Julie

          thanks for the good news – and also your promise not to trash talk TVEC :-). I know it did give you herpes (sorry!) but I think it worked for me, combined with keytruda, when keytruda alone was not really working. after one year I kind of reached NED status (dont want to jinx it). I do think you need to give it time, with me my tumour i think grew slightly at first and then came back down. But it took nine months to one year to fully work although you could see the progress each two weeks from the ultrasound. And also i agree with your oncologist that the tumour might feel less solid – my doctors had the same qualitative impression but I thought maybe they were trying to cheer me up.

          TVEC did cause me fever, for a day or two each injection, but I think it really helped me. And rose bengal seemed to help texmelanomx even more quickly. I know it did not work so well for a fellow patient but with a higer tumour burden. So i am reallt glad for you that it seems to be working, am sorry for your side effects but hope maybe you can risk more treatments and give it time. Will be amazing if it work!

          well done and good luck

          Mark

          • March 26, 2019 at 8:51 am
          Lucygoose
          Participant

            Glad it looks like it’s working! 

            Everyone is a monster on steriods! 

            Here’s a laugh.  I completely misread your warning and thought ‘hemarroids are a side effect of T-VEC?’  Doh! 

            All the best to you. 

            • March 26, 2019 at 8:51 am
            Lucygoose
            Participant

              Glad it looks like it’s working! 

              Everyone is a monster on steriods! 

              Here’s a laugh.  I completely misread your warning and thought ‘hemarroids are a side effect of T-VEC?’  Doh! 

              All the best to you. 

              • March 26, 2019 at 11:50 am
              Bubbles
              Participant

                Sorry about the cough and roids, Julie!  BUT…super psyched that your misery with T-VEC may have done you some good!  That's awesome!  Shrinkage is great….even if you end up having surgery…at least it could be less invasive.  Hang in there.  Hope the roids don't cause you too much distress and your cough evaporates!!!  celeste

                • March 26, 2019 at 8:48 pm
                jbronicki
                Participant
                  Glad herpes is working for you! Still funny 🙂 Seriously though, very glad and my last go round with prednisone for nerve pain, I couldn’t stop weeping. I think my dose was too high. Steroids can totally mess with you. Since you are pretty sweet already, you with roid rage is probably just average day for the rest of us meanies.
                  • March 27, 2019 at 12:02 am
                  lkb
                  Participant

                    Juuuulie, hooray for softer and smaller–and for CT ruling out recurrence. Yezzah! If crazy for 6 makes the cough go bye-bye, then it will be worth it. Happy to hear you are seeing results. I'm on the intralesional rat team and am optimistic about that too. Keep us posted.

                    • March 27, 2019 at 1:06 am
                    DZnDef
                    Participant

                      Julie!  So glad there was an upside to your TVEC adventure.  I am seeing the rock star tomorrow to decide on next treatment.  Leaning towards chemo at this point since my tumors seem to have sped up, but open to suggestions and recommendations.  My mets are all living in my subq fat and lymph nodes.  No where immediately dangerous, thankfully.  I like the idea of chemo at this point because I know it targets fast-growing/dividing cells.  My mel was seriously indolent when I first found it but it is more speedy Gonzales these days.  So chemo might have an impact now.

                      I hope to read that your mets have completely disappeared soon.

                      Cheers!

                      Maggie

                        • March 27, 2019 at 4:42 am
                        Casitas1
                        Participant

                          Hey Maggie, I was given chemo (low dose) by the Rock Star back in 2015 after failing Ipi/nivo and gained an immune response. We then knocked out Mel with Pembro. Been NED ever since! I remember my tumor becoming partially necrotic during chemo. The side effects were minimal. Well worth discussing with Dr. Oday.

                          Best, Paul

                        • March 27, 2019 at 4:25 am
                        Casitas1
                        Participant

                          Melt Suckers Melt! Hoping the Roid Rage calms things down. I am still on Inhaler and low dose steroids from 2015 treatment. Way to give a beat down to the Melhellnoma!

                          Best, Paul

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