TVEC questions

Posted By
Bradley75
12/5/2018 10:32am
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Replies: 10

Good Morning Melanoma Family,

I have my first TVEC injection on December 20th.  Been through consultation, ultrasound, examination, and everything else under the sun.  They are waiting on insurance approval and plan on injecting me when I get my next Pembro dose.  They have answered all my questions about this and that, but they lack something this board does not.  There are people on here that have been through it already and I have learned the information of those on the front lines matters a whole lot.

Anyone out there have real experience with this?  I am also wondering about the possibility of infecting my wife, kids or other family members with the Herpes they inject.  My onc has addressed this stuff, but the more info I can gather the better.

Thank you all for all the help you have given me and everyone else that comes here confused, scared or anxious. 

Brad

ed williams - (12/5/2018 - 12:28pm)

Hi Bradley, I am not sure if anyone that is a current member on the MRF forum has experience with t-vec, that being said,may be someone will post. On another melanoma site there is a guy that is very active from Texas and he is doing great after having T-vec + Pembro and I am sure he would respond to any request of information. You can look him up on "Melanoma support melanomies united" you have to join the closed facebook group or you can try reaching out to him on facebook. His name is Kent Gilliam and there is a picture of him on his bike with an American flag in the background on his facebook page. Best Wishes!!!Ed 

Bradley75 - (12/5/2018 - 5:29pm)

Thank you very much for the info.  You have been so helpful over the years.  I appreciate it very much. 

-Brad

Bubbles - (12/5/2018 - 12:45pm)

Hi Brad, 

I am sorry you are going through this, but super glad that this is where the science has come for you.  

Here is a link to T-VEC/talimogene laherparepvec/Imlygic information page:  https://www.imlygic.com/  

Which states:  

The IMLYGIC® virus can spread to other areas of your body or to your close contacts (household members, caregivers, sex partners, or persons sharing the same bed). Do the following to avoid spreading IMLYGIC® to other areas of your body or to your close contacts. You should share this information with them:

Avoid direct contact between your treatment sites, dressings, or body fluids and close contacts (for example, use condoms when engaging in sexual activity, avoid kissing close contacts if either of you has an open mouth sore).
Don’t touch or scratch the parts of your body that have been injected with IMLYGIC®.
Wear gloves while putting on or changing your dressings.
Keep treatment sites covered with airtight and watertight dressings for at least 1 week after each treatment (or longer if the treatment site is weeping or oozing).
Replace dressings right away with a clean dressing if they become loose or come off.
Place all used dressings and cleaning materials in a sealed plastic bag, and throw them away in the garbage.  

I have not taken this treatment personally, but here is a great deal of information on T-VEC:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=t-vec  

Here is a great deal of info on intralesionals generally:  

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=intralesional&max-results=20&by-date=true  

Hopefully others with more direct experience will respond.  However, you may look up TexMelanomamex's posts as he is taking pembro with PV-10.  Hope that helps.  I wish you my best.  Celeste

 

Bradley75 - (12/5/2018 - 5:30pm)

You and Ed are always so helpful.  Thank you so very much.

-Brad

Lucas - (12/5/2018 - 1:15pm)

I start Tvec injections tomorrow Dec. 6th. I am currently on Nivo and my disease burden is low. Just a few pencil size marks on my foot and one small sub q. I ahve also been through many steps to finally be staring.  Ed is right about Melahomies on Facebook. Many on that site have had a positive experience with Tvec. I believe the chance of developing actual herpes or passing it, is very rare. Hopefully I can also share a positive experience soon.

Bradley75 - (12/5/2018 - 5:32pm)

Lucas, 

Thank you for the response.  I look forward to reading about your experience.  I will share mine as well in case it might help you or someone else.

-Brad

kentuckycat - (12/5/2018 - 3:02pm)

Hi Brad,

I have had t-vec in a nodal lesion and unfortunately it did not work for me.  The tumor got rather big during the t-vec injections and we were hoping it was working and eventually start shrinking.  Unfortunately it continued to get bigger.  I was getting pembro at the same time.   I had to switch over to a b-raf inhibitor and that shrunk the nodal lesion almost immediately.  I have not had any symptoms of herpes.  I wish you the best of luck.  I have heard others have had a more positive experience.  

Bradley75 - (12/5/2018 - 5:35pm)

Hi kentuckycat,

I am sorry to he this about your experience.  I have also been a non-responder to some treatments or had progression while being treated.  It is never fun to hear those words.  Best of luck to you as well.

Brad

maryb-z - (12/5/2018 - 10:22pm)

Hi Brad,
I had 3 lesions in my lower leg that I opted to try T-vec as opposed to another surgery. After 5 of the scheduled 12 sessions the lesions could no longer be detected so treatment stopped. I was NED 14 months but this past August a lesion showed up farther up my leg. I opted for surgery and Opdivo. I was having far too many surgeries and wanted a systemic approach.

T-vec was very doable. Someone recommended I take Claritin D before injections and a few days after to lessen aches and pains. It worked for me. I had some fatigue too, but nothing major. Good luck!

No One Fights Alone

maryb-z - (12/5/2018 - 10:27pm)

Brad in regards to your concern about herpes I have not had to deal with this. I asked dr. about it and other than sexual contact she felt kissing my loved ones or sharing the same drinking glass would not increase chances of spreading herpes.

No One Fights Alone