#59238 10-21-2006 10:16 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | The Lord might suggest you get a little extra help with an antidepressant  Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#59239 10-21-2006 11:50 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Amy,
It is my intention when I get back to our home in GA to speak with the mental health professionals. I was just wonder if anyone had a similar experience and how they dealt with it.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#59240 10-21-2006 03:23 PM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 248 | Tim,
Thank you for your words of encouragement for my 7 yr anniversary. I think I know why my wife would not go out to eat with me last night. About 18 months after my treatment we are in this restaraunt and the waitress asked me 2 simple questions. How are you? and would you like bread with your meal? Boy was that a big mistake. I suddenly went on how they screwed my head down on a table shot beams of fire thru my head killing all my salivary glands then if that wasn,t enough they gave me chemo that was like throwing fuel to...... It was at this point when my lovely wife chimed in that I was doing fine and I would pass on the bread. This might be a small exaggeration but I womdered how long do I have to live until HOW ARE YOU means hello again and not this shitty cancer question. You will get there my friend. The day I felt the toughest was the day I finally admitted how weak I was.
P.S. I can eat solid foods just not that great.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#59241 10-21-2006 04:42 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | MD,
You crack me up. Great sense of humor you have. I know I'll get there, it's just sometimes I'm inpatient. Posts like yours and this OCF forum are great for me. Thanks for the encouragement and making me laugh.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#59242 10-22-2006 02:34 PM | Joined: Jun 2005 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2005 Posts: 49 | Mark D., how funny. That was a knee slapper! Humor helps so much to see a different side of this. At least we can still laugh. Mary
Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker
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#59243 11-01-2006 11:19 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Almost a month out now. We are back home in GA and it's great to lay on my own couch. Still not much taste although I eat by mouth exclusively since I had my PEG removed. I still have a sore throat when swallowing...any idea how long til it gets better?
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#59244 11-01-2006 12:22 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Tim, it is getting better- you are on your couch [probably in complete control of the remote  ] I predict it is only up from here! Glad you got home.Keep on doing well and be patient. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#59245 11-01-2006 02:16 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Tim,
I use 2 cans of VHC and eat 2 meals a day. I have appx 60% taste back but the dry mouth thing is still with me.
My mother-in-law feeds her squirrils shelled unsalted peanuts. I love shelled peanuts so I opened one yesterday and popped 2 big nuts in my mouth and began to chew. I could taste them BUT THEY FORMED THIS HUGH BALL IN MY MOUTH AND MY WATER BOTTLE WAS IN HER BACK YARD !! I honestly didn't think I was going to make it but I did and I'm still here to talk about it. No more peanuts for a while.
I am a little sensitive to most red sauces and my throat is a little sore after eating. I find that milk is soothing with my food more than anything else.
I'm pleased with my progress though. One month ago I never would have imagined I would be this far along.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#59246 11-01-2006 04:39 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2006 Posts: 378 | Hey Tim,
Jack is now 5 months post radiation/4 months post the last chemo and his swallowing has gotten MUCH better in the past month. His taste is completely back. For him the 3 month mark was a big turning point, but it's different for everyone. Jack also supplements what he's eating with 2 cans of his formula every day to get the calories in. I think David has a good tip on that one with the VHC.
The sore throat is common, the muscles are getting back into shape by breaking down and moving that food. Think of is as another exercise to do.
Like David Jack's a little sensitive to red sauces that are spicey but even that is getting better. We were in Baltimore last night and he successfully ate crab cakes, a half a rack of ribs (always get extra sauce for everything), crab dip with nachos, and a nice room temperature chocolate stout - a $.99 happy hour helps motivate you to experiment.
I swear it will get better, and you have great tender moist BBQ in GA. Keep the water bottle handy or sit next to someone willing to share. The dry mouth is Jack's biggest problem with swallowing so the surgeon sent him for acupuncture to see if that would stimulate the saliva. Stay tuned on that one, it takes several treatments to know if it's doing any good. Don't forget things like salivert, and the biotene products.
David, glad to hear you're laying off those killer peanuts...Jack bought some on an impulse last month and promptly choked as well. Some things just have to wait a little longer.
It sounds like we're all making progress considering where we were a few months ago.
Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#59247 11-01-2006 04:53 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | David,
Funny you should mention peanuts...I tried to eat some Halloween night and the same thing happened to me.
JoAnne,
Thanks for the info...I really loved those Md crabcakes or how about a soft shell crab sandwich
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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