Trainkid9

Those damn hecklers

Hi /u/Hocico_reddit I am a soft-tissue sarcoma survivor!

First off, what kind of cancer did you have? I had Rhabdomyosarcoma in the nasopharyngeal and my jaw, it also metastasized into my lungs.

Are you doing the VAC chemotherapy protocol? If so are you having the problem where you can no longer stand flat on the ground, you are stuck on your toes?

I just think it's really cool to see someone else in the same boat as I am doing an AMA. If you have any questions or want to get in touch, feel free to PM me! :-)

Hi, :-)

VAC is a chemotherapy protocol, it is short for Vincristine, (D)actinomycin, and Cyclophosphamide. I also had Doxyrubicin and Ifosfamid, and radiation to my face and lungs.

I got the toe-walking side effect (Peripheral Neuropathy](http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/definition/con-20019948)) from the Vincristine drug.

In short, my treatment did not go well. I had very low blood counts, I still have a Platelet Deficiency (Thrombocytopenia). I also was unable to eat and talk, (see my reply above). I was in septic shock two times, and spent over a year in the hospital. Even after all this, I know that I am a very lucky person, because I met kids in the hospital with me (I was 12 at the time) that were a lot sicker than I was. There was one kid that lost her leg, and another boy that had to have his leg replaced. There was also one young girl that had the same cancer that I did, she had to have her jaw removed.

Again, I am really sorry if this doesn't make a ton of sense. I am shaking right now.

It was very hard, but I am doing better now. I am now 15 and have been cancer free for just over a year.

No, I did not. We decided that surgery on the jaw would do more harm than good in my case. Instead I had radiation therapy to my face. i would lay down on a table, and they would a mask on my face, like this. Then I would have the radiation, which doesn't feel like anything. It sounds and looks very similar to an x-ray machine. Afterwords the radiation made my jaw very tight, to the point where I could not talk or eat for 6 or 8 months, respectively. Instead I ate through what is called a g-tube.

I'm sorry if I am rambling or this is hard to understand. This is still very difficult to talk about.