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Joined: Oct 2010
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Johanne Offline OP
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Joined: Oct 2010
Posts: 15
Jim, thank you.

I've seen the "not-so-lucky" folks in my work; as I said, we do a lot of radical neck dissections and surgeries for oral cancer. I've watched people get worse, then slowly (slooooowly) better, and I've never been more thankful for a particular diagnosis than I was with this one. Talk about getting what my sister calls "the p*ssy cancer"!

I do intend to kick Lieutenant Lumpy's butt (that's what I called him before he was evicted) and send all the strength I can spare back to you guys. Thank you all for your warm and supportive welcome.


Polymorphic Low-Grade Adenocarcinoma (PLGA), dx'ed 9/10. Surgery 10/20/10--resection of soft palate and right hard palate. Of the 36,000 oral cancers dignosed in a year, I get the one that sounds like a golf tournament. Sheesh.
Joined: Jun 2007
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Johanne, you sure gave me a smile and chuckle with the "p*ssy" name.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Jo,

Imagine that... I don't have your same cancer, but I literally just texted someone about my own lack of enthusiasm for rad/chemo.

Last month, 9/15, I had about 75% of my tongue carved out (clear margins)and reconstructed from my left forearm. Skin graft from leg. 50 nodes pulled and checked - all negative. But, there was one under my old tongue that was positive.

Because of that one, I'm up for nine weeks of Cisplatin(sp?) with concurrent radiation (30x). Both of which I'm dreading. I feel like it's going to be slow and painful. If it were up to me, I'd quit now and be cool with it. I'm down with the scars (had a major car accident a while back 150+ stitches in my face), I can eat most what I want (except for that damn tortilla chip last week - lesson learned!), my sharkbite (arm) isn't bad and I can speak (mostly) and swallow.

Fifteenth of this month (November)I start treatments. Had my "mask" made last Friday. Had "chemo class" last Wednesday. Was told that I'm borderline anemic and will likely need transfusions and to go in for hydration as well.

While I can't necessarily offer the experience you're looking for, I can tell you that you're not alone at this point (physically or mentally) and that if you'd ever like to talk about this I'm just a PM away.

I wish you well and hope for the best!

Scott


scc oral tongue cancer, stage IV
biopsied - 08/02/10
got the news - 08/10/10
staged (T4aN1M0)- 08/23/10
surgery (75% glossectomy) - 09/15/10
30x IMRT radiation completed - 12/28/2010
3x Cisplatin chemo completed - 12/27/2010
returned home - 09/23/10 (yay!)
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