• krbrowndog's Avatar

    krbrowndog posted an update

    I had surgery in 2010 for oral cancer, subsequently it came back and I went through radiation (ended feb 2012) I have no cancer now but very intense swelling and lots of tongue pain, so far no one has been able to tell me what to do about it, I know that most of this is caused by the removal of so many lymph nodes and also the radiation zapped what few were left, but its been 5 months and still no reliefe from the pain. I'm hoping that cancer is not coming back, anyone out there experience anything like this? and if YES what did you do about it.

  • krbrowndog's Avatar

    krbrowndog posted an update

    I have finished radiation (33 sessions). It was not plesant, but better than the surgical alternative. This is my second fight with the same type of cancer (squamous cell of the floor of the mouth). I am 7 weeks out from the final rad session and still experiencing pain, however it is being managed quite well with narcotics and also MBX (numbing concoction) so I can eat and be comfortable. I just had a visit with my oral surgeons at Univ. of Michigan and they say my condition looks good and that I should now just wait 6 more weeks and come back for another eval. The anxiety produced from waiting and not knowing for sure if the cancer is gone is one of the worst parts about all this, especially since this my second attempt at getting rid of the MONSTER.
    I don't know of any pain worse than oral pain, and believe me I have had enough experiences with pain to be able to speak with authority.
    I don't really know why I'm bothering to writer this, but maybe someone else is sharing the same situation and there is strenght in numbers, the group synergy thingy.

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    krbrowndog posted an update

    I am scheduled for surgery on the 19th of Dec. actually pretty much the same surgery I had back in June of 2010, that being surgery for squamous cell of the floor of the mouth. one of the side effects of this surgery was the requirement for "mouth rest" and subsequently a tracheotomy and the therefore I was unable to speak. At first I used a notepad to communicate, then graduated to a dry erase board (Wall-greens, or Kmart). I am a computer user and had a laptop and now a netbook, I did a search for text to speech software and found out they were quite expensive, with more research I finally found a software program that was inexpensive and worked quite well. This enabled me to ask questions and make my needs and wants know by just typing on the keyboard and pushing one button. This made it easier to ask questions of the treatment team and to also generally make my thoughts known, (the only thing I couldn't get the software to do was YELL) which is something I wished I could do on many occasions.
    All this being said, the name of the software is Text Aloud and it is sold by Next Up software company. There is a free demo version, but it only costs about 50 bucks for the basic version, I also ordered the ATT Voice which sounds more like a real person as opposed to the free voices that come with the software, still a modest investment when you compare it to the $3000 that some software costs and which basically does the same thing. I'm not here to sell anything to anybody, but it was very surprising to me that the Doctors at U of M had never heard of this software, and don't seem to care that not being able to speak is a huge issue to many people. One thing though, when I was in early recovery, I was on many pain killers and they made if very difficult to operate my computer, but I was without speech for about a month and one half so it came in handy at home. I also have some other tips for those going through this type of surgery, and like I said I have to do this again, which pretty much SUCKS.

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    krbrowndog posted an update

    I want to find a alternative to surgery, including but not limited to hyper-thermic tx with or without radiation or chemo. or any combination other than surgery.