My beloved is suffering.

Tomorrow is rad number 24 of 33. Wednesday is number 5 Erbitux. He had a bad reaction to ms contin on tuesday, tried a fentanyl patch, he is very nauseous, wes yesterday too, and threw up copious amts last night. Am seeing that there is more residual in peg when i pull back, so at 1 pm today, we removed the fentanyl patch that was applied friday morning, hoping it would allow him some digestion. He barely tolerated 3 cans of 2 cal today, supposed to have 5.

What is with the nausea? He is on zofran every 12 hours, but it is not cutting it. So, is it the fentanyl? Or, just where we are? Thank god i planned to be home with him this last 2 weeks, i can see he really needs help and care, not just rides.

His throat is dry as dust, as promised, and the mucous is thick and stringy. Just read about the water pik, will buy one tomorrow.
I was not prepared for how bad he would feel........
And, what do we do for pain now? This afternoon, i crushed 2 percocet and gave to him via the peg, but it doesn't help much. His throat is on fire and his tongue s throbbing.

PS: Someone asked , where is Fire Island, NY? south eastern barrier island to Long Island, southeast NY, 70 miles east of NYC. Sorry for not responding sooner.

Thank you all, have learned so much from you.

Hi - I'm sorry about the nausea - I was blessed in that my nausea wasn't that bad - though I did gag a lot due to the saliva... The peg did me in completely - perhaps its running too fast? that can definitely cause nausea, but then I am sure the Erbitux can as well. I'm sure someone will be along to give better advice but I didn't want to you think you were being unheard. Eric may suggest medical MJ - I would also suggest talking to your dr her/ she can change the meds... perhaps find something better. Take care and my thoughs are with you both.

My husband's nausea was terrible. He couldn't even try to talk or he would gag and throw up the mucus was so bad. He was on both Zofran and Compazine. Maybe your husband needs another anti-nausea med added? Hang in there it is heart breaking to watch someone you love so much struggle so much.

I just finished Tx 8 weeks ago so I know where your husband is. This and the next two to three weeks post Tx is the worst of it so get geared up for it. I survived the thick mucus using flavored soda water available at Walmart. Swish it in the mouth and gargle it to cut through the thick mucus. It bubbles up and cuts it out of the back of the mouth.
NEXT: Use the anti nausea drugs on a scheduled basis to get it under control even with it I still had nausea. The pain meds will slow the passage of foods out of the stomach but don't get too worked up about it unless he just has like 30 to 50 cc's residual. Yes they say you need 5 to 7 cans of the liquid food daily. Hell I couldn't get 3 cans down for days. Yes I lost weight 52# to be exact. a friend of mine lost more than 60# ...everyone will I don't care what you do you just can't get that much stuff in without it backing up your throat. Be VERY careful if they recommend using Reglan to help move food out of the stomach ... the side effects are not good. Sleep sitting up in a recliner to avoid reflux. Use Miralax and /or Senokot ( for constipation ) daily the pain meds slow down the bowel.

ALSO
... Get a Rx for " Philadelphia "mouth wash ( swish and swallow ). It's a combination of Xylocaine, Liquid Benadryl and Maylox. You swish and swallow the stuff and it relieves the pain in the throat for a short time. AND MOST IMPORTANT........STAY AHEAD OF THE PAIN ! Take whatever it takes to be comfortable. For me it took a 75 mg Fentanyl patch and 8 to 10 mg of Dilaudid daily to do the trick. He doesn't need to be in that kind of pain.

Like I said I'm just coming out of the other end of this mess and will be glad to speak with you if you'd like. Send me a private message by clicking on my name and then on the drop down menu click "send PM".

Jack

Thank you for your detailed reply and voice of experience. We need to hear there is another side! We are now trying toredol for pain, and i make him take it even when he says it isnt so bad. The peg residual was more like 100 cc! We go to med onc tomorrow, hopefully will get something more effective for nausea and vomiting. Will try soda water, sounds like a great idea. He has the mouthwash, it too is making him gag. He is on zofran every 8 hours, only vomited twice today
Best, ess

Hi Ess, does he have a pump with the PEG? This helped my brother's nausea. Another thing. If he's on any pain meds, be proactive and prevent constipation which is one problem he doesn't need at the moment. My brother says that meds-induced constipation was the very worst of the the whole thing, even though he also had a bad reaction (but probably just normal) to the Erbitux. Get him to drink lots and lots of water. Simon mixed each can of PEG food with 50% H20, and drank more besides. Helped him through, though didn't prevent the constipation. When you in the middle of it, it seems neverending - you get to the end of it, you blink and it's 6 months in the past. I wish you the very best.