What is it growing in/on?
My tumor is now growing/living in the tissue/muscle in my neck. It isn't a lymph node as I had pretty much every one of them removed on that side in February 2015.
When did it start growing/how did you find it?
It started growing/forming in probably April 2015 while I was on biochemo (not a good sign.) I could feel a hard lump by my scar, was told it probably was a scar bridge/scar tissue, but it wasn't until June 2015 that we confirmed it was a tumor and metastatic melanoma through a biopsy and CT scan.
Why don't they just remove it?
There are a couple reasons for this. One is that since it isn't a lymph node or contained it is hard to remove all of it without leaving stray cells behind which would just continue to grow. A surgery would just be a temporary fix and the tumor would return. Another reason is that the treatment I am on it is necessary to have a tumor to inject into. If you remove the tumor you no longer are able to be on this treatment. The goal is to kill the tumor instead of removing it. If at any time I am sick of the tumor I can request they take it out, for now we are going to continue on the treatment trying to kill it for good.
What about radiation?
There are a lot of things to consider when deciding on radiation. One major thing is that melanoma doesn't respond very well to it, making it less effective. Also there are a lot of permanent side effects that are very serious that I didn't want to risk.
Does it hurt? Do the injections hurt?
The short answer is, not really. Because of my surgery to remove the lymph nodes on that side I have nerve damage so the surface (most of if) is numb so I can't feel any pain in that area. I do have some nerve sensations/burning at times and tightness but not so much constant pain. The area is very tight, but luckily it isn't painful. As far as injections go, if they inject into the large tumor I can't feel it really, just a slight pressure as we are adding fluid (approx. 5ml) to it. If they inject the smaller one there is more sensation on the surface so I do feel that one a lot and it isn't fun to say the least. It is an intense burning pain/sensation.
How many more injections do you have to do?
Right now I have 12 more injections available, given every three weeks. If the tumor is gone before the 12 injections then we will stop them, or if there is any health concern that would validate them pulling me off the study then they will stop them. As of right now I am planning on all 12, or 36 more weeks of treatment.
What are the injections?
The injections are of a virus directly into the tumor. The virus is a modified herpes simplex 1 (the cold sore virus). Since we know that the body responds to herpes we are injecting it directly into the tumor. Your body then sends white cells (a whole ton of them) to the area. Once there the cells realize something else is going on and begin to attack the melanoma cells as well. The melanoma cells then burst and die (that's the hope). It also should act like a vaccine and form a cell memory for melanoma and kill any stray cells through out the body now and in the future.
When the tumor dies, where does it go?
When a tumor dies, your body reabsorbs the cells and does away with them. I don't know how that truly happens, I just know that the body flushes them out on its own. Sweat? Pee? Poo? Who knows...
Will you have herpes then?
There is a chance that I may develop cold sores, but it is not known for sure. As of now I haven't had any problems or cold sores. I am not allowed to share food or drinks while on this treatment just to be sure I don't spread the virus to anyone else.
Can I touch it?
Yes, definitely. And no it doesn't hurt. People love to feel it and are usually surprised at how hard it is.
Are you sick of talking about this?
Nope. This is pretty much my life right now so it is most of what I have to talk about. I am happy to answer questions people have, it also spreads awareness of melanoma and that it isn't just skin cancer or on the surface - that most of the damage and danger is internal.
Let me know if you have any other questions!!
This is the most recent picture of the tumor...
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