hi all,

i thought my next post would be celebrating the fact that i had finished my treatments last tuesday, but unfortunately i got hit with some side effects.

first of all, the radiation caused 2 fistulas to form. i had been dealing with one of them since the beginning of my treatments, but the second one decided to show up a few days ago. they are both draining now, and i have so much gauze wrapped around my neck i look like a mummy. did anyone else have this problem? how long did it last? mine seem to be going away...but not fast enough for me.

the other wonderful thing that happened is last saturday i was rushed to the emergency room because my left leg decided to swell to 3 times it's normal size. i had developed 2 huge blood clots in my leg and now get to look forward to 2 shots in my belly per day to treat it. i find out tomorrow if the shots can stop and i can just take pills. i get to wear a very fashionable suppport stocking on that leg for the next 2 years and will be on blood thinners for the next 6 months. i also will have to have weekly blood draws. for someone who despises needles, this has been a great experience {not!!!}. i didn't know that blood clots were a common problem in cancer patients. anyone else go through this wonderful experience?

i now have to sit around and wait for the extreme pain in my leg to fade. i can hobble around for short distances, but then the pain gets horrible.

sorry to be venting, but i'm sick of all of these side effects cropping up. i was all set to get back to part time work, and now i can't do anything. this is so frustrating for me. i'm beginning to lose any hope i had for getting better. :rolleyes:

thanks for listening. :p

Jeanette,

I can't respond to any of the answers about the side effects you are having. Mine are different than yours.
But I had to post because you sounded so "down" about everything. It sounds very much like you have had a bubble burst because you were so ready to put this all behind you. And you still will, it will just be a bit longer than planed, but none of us planned for any of this anyway and you've handled it like a champ.

You can do this...and you can do this well. After your venting (venting once and a whie is a good thing)read the sign off on all your messages, because when I first came to the board I thought it was the absolute best phrase I had ever heard.

Take care,
Dinah

Welcome to the fistula club........I had one for years after radiation, then after my surgery last year I developed one on the left side of my face, they fixed that, now i have one on the left side..........which by the way, my wife has to poke open twice daily with a q-tip........and that`s getting sore..........unforntunately, fisulas do result from radiation, that`s something I didn`t learn til after the fact....surgery corrected the one on the left side of my face........I`m having surgery Mon, and they better fix this one too.........just know you`re not alone with fistulas

Hi Jeanette,

I'm so sorry to hear of your continuing problems. I thought I was listening to my mom while reading your post. If it's not one thing...it's another. Post-treatment, we are having trouble keeping her electrolytes under control. She is extremely lethagic and fatigued but is also having trouble sleeping, so she's not a happy camper.

Thanks for your post though. It's always a help to others when someone gives us a "heads up" on any of the possibilities.

I hope you are feeling better very soon!

Cynthia

packer 66, thanks for letting me know about the club. my ent doesn't seem to concerned about the fistulas and i didn't know how common they were. mine seem to drain and then heal up by themselves. hopefully that means i won't need surgery to fix them. i'll keep praying about that one....i really don't want to go back under the knife again.

my leg is feeling better each day....less and less pain. i can hobble up steps now...without screaming, so i consider that an improvement.

thanks for all of your support.

i'll keep you updated.

anyone who wants to contribute to the oral cancer research at ohio state, please see my posting under activism.

thanks