I am an over achiever! T-Vec landed me in the ER yesterday

OK – gonna try for the 3rd time! Still newbie here and tried unsuccessfully to send you a response (Zeb's Mother) – Thank you for the additional information! Btw, my daughter is a music therapist in your neck of the woods: Miller Hospital in Long Beach – I wish you all the best and hope that your current situation heals quickly! 

April

Dang Julie!!!  You ain't gotta go whole hog on EVERYTHING, you know?????!!!  Bless your heart.  Where I grew up, folks would say in circumstances like this – "Can't win for try'n!!!"  But, I'm still holding out for the win for you!!  Hope you are better super quick!  celeste

Ok, now you are just showing off Julie!! 🙂  Seriously though, so sorry that happened and I'm glad your starting the antibiotics/antivirals and hoping you quick relief.  That must be painful and just glad you've got such a good and responsive team.  Who ever thought we would be treating with herpes, just need to keep those little buggers in line!

So, your earlier headline was right; they did give you herpes! But also, does the inflammation mean you got an immune response? I don't mean to be naive and it sucks that you ended up in the ER with a red hot mess, BUT could this also be a sign of success? Rooting for you!

Hope you are feeling better today!  Thought you might like to see this article:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/02/t-vec-demonstrates-orr-of-more-than-88.html  

I bet you can bump those numbers up!!! – c

Hi Julie

Thanks for posting – I tried to reply Saturday night but the captcha would not let me through – now am glad you seem to be recovering.

Your post rings true because I have been on TVEC for one year – although nothing like this ever happened to me and I wondered sometimes whether they were injecting anything. Although I did almost always get fever at least for the first few months. Some of the worst fever I can remember but quite short-lived, only one night and the following day. My doctor and nurse did have to suit up and wear protective goggles and stuff. I wondered if they were overdoing it though since I thought the TVEC was attenuated so that it was not really live or something like that. I didnt realise quite how potentially dangerous it might all have been.

I found it a weird treatment – it takes quite a long time because I had to have my tumour measured, then they would order the TVEC, it would have to be unfrozen, pharmacy would take a long time. While all this was going on I would try to get my keytruda infusion, which also involved seeing another doctor and nurse and then a pharmacy order. I would run both simultaneously. If lucky and the nurse ordered in advance I could do everything in about 21/2 hours; most of the time it would take 41/2  hours including waiting time. Plus travel time to and from the hospital.

I do think it has helped. Under keytruda alone my tumour slowly grew larger for one year. Adding TVEC the tumour grew at first (scary) but then came back down again, and then started to shrink. I could see my progress on ultrasound every two weeks – frightening! RIght now the MRI still shows my tumour but much smaller (thin); on the ultrasound we cannot really see it so we can no longer inject.

I had found Celeste's article a few weeks ago I think – I am not a super optimist so think the response rate is too high (when do you get 80 percent response rates for melanoma??!!!) or too good to be true, but the report does sound plausible (it says all patients had grade 1-2 events which makes sense since fever is very likely and painful). When I started TVEC I was expecting a 20 percent chance of success. I do hope we can collect reports on those of us taking intralesionals to get a sense of the success rate and when best to use it. It could be a miracle cure, perhaps for those of us with fewer tumours, I dont know. I was hoping for NED through this but it seems not clear, so far I am only a partial responder, but smaller is better.

So, I hope you get over your fever and the herpes quickly, that you soon get back onto treatment, if possible I wold combine with keytruda, and I hope very much that it will work.

You have been through a hell of a lot Julie, but you have done really well and I am hopeful that TVEC is going to work for you.

Best wishes

Mark (a fellow economist! :-))