Anne-Marie, I too am amazed that your son was taken off the hydrocodone & given ibroprofen! There is no way that Advil would come anywhere close to touching Teri's pain! Her medical onc told her on Thurs that he was ready to prescribe the Fentenyl patch for her if she felt she needed it (she elected to try & stay with the oxycodone - she's concerned about feeling drugged with the Fentenyl.) At 2 weeks post tx she's feeling 'the worst pain she's ever experienced' as she explains it. How could any doctor in good conscience prescribe ibuprofen for that kind of pain?!? It's my hope that the oxy will continue to see her through, but I won't hesitate to encourage her to accept the Fentenyl if the suffering gets any worse. I'm with Gail & all above - please see about getting your son some significant pain relief ASAP!!
By the way, Teri did take a few sips of tea & 2 teaspoons of ice cream (of course it was Haagen Dazs) today. She said it was like swallowing glass shards but she did it & promises she'll do more tomorrow. I can't believe I'm so excited over an ounce of liquid, but it's a baby step forward in this long journey!

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Bonnie
CG daughter (age 41) SCC lateral side tongue, surgery 10/16 + modified neck dissection, stage 3, 1 postv node, IMRT x30 finished 12/22

Dear Bonnie --

Actually, my husbnad was happyty to get off the oxycodone and onto the fentanyl as he felt FAR LESS DRUGGED! The oxycodone made him woozy and he was, for example, unwilling to drive, on the Duragesic he felt pretty normal. Also, it controlled his pain better -- as the oxy is short-term (4 hours) whilst the Duragesic lasts 72 hours.

One caveat -- when he first went onto the fentanyl (25 mcg) he had 2-3 nights with vivid dreams and restless sleep -- apparently this is not unusual -- and he kept a night-light on! (By then I was sleeping in the guest room anyway, as he was having to get up several times in the night with the usual phlegm issues.)

If your daughter is feeling that kind of "worst pain" she needs more help. Suggest she try the Duragesic with perhaps the oxy for "break-through" pain -- that's the norm at Johns Hopkins and they treat 100s of cancers a year.

Gail

Just wanted to update everyone on Paul's (my son) progress. He is three weeks, 4 days post treatment and doing so-o-o much better! A few days ago he received the great news that his Amifostine is being paid for by the drug company so that saves him about $28,000! I posted this news in the Financial forum. He is eating very well. The thing he wanted most to do was to go to Taco Bell and have a chicken burrito which we did and he even went back again later in the evening for more Taco Bell. Just seeing him take the first bites of the burrito were exciting as I searched his face for a reaction and hoping he could manage it. It reminded me of when he was a baby and his first spoonful of sold food at six months and how we applauded him! The SSDI news (claim denied) was disappointing but since he is still hoping to get a job quite soon, he thinks he may not be eligible anyway. A couple of the jobs he applied for were turned down because of his credit rating and I hope he doesn't get turned down because of his cancer. He does have some other good prospects for some computer programming jobs, though.
We received the Carnation VCH online and at 560 calories for 8 oz, that will help a lot. The pain has decreased making it easier for him to eat and swallow and he hasn't wanted me to call the doctor for more pain medication. The "pain management team" should be getting back in touch with him soon so we'll see what happens (I'm keeping the OCF pain medication info handy, tho'). Everyone's posts have been so helpful to us and so appreciated. Bonnie, I hope your daughter is doing better, too.

Ann-Marie - I'm so happy to see Paul is progressing well. It is lousy to have to worry about work and career decisions on top of cancer. I'm betting on Paul, and hopefully before you know it he'll be out at lunch with his new work associates eating anything he wants of the Menu.
Always,
Mark D.

Anne-Marie,

It's amasing how we all seem to feel much better around the 3rd week post Tx. It will get better as time goes on; not day by day but it does continue to get better. I am 4 months out and I still see slight improvements. I am waitng for my dry mouth to go away even though it is much better than it was 2 months ago. My taste has almost fully returned but the dry mouth tends to hide that improvement. I still drink VHC every day to supplement my eating.

Glad to hear Paul is on the mend. I hope he has good fortune in the job hunt.

Take Care
Tim