Dear Friends,I haven't posted for quite a while because things have been very difficult at our house.

Now that Roy is 2 months post treatment, I'm wondering if it is normal for him to still have increasing pain in his tongue...so much so that he won't even try to eat through his mouth. (He takes 10mg Oxy every 4 hrs) He also has great trouble swallowing, and relies complete on the PEG for all food and water. At times, when he begins a feeding, he immediately throws up. Then he will take anti-nausea meds, and they totally knock him out for a day or so w/o food or water.

He sleeps most of the time now, and seems to be losing his drive to pursue getting better. I'm scared and don't know how to help him. Is this all just part of the process, or is there something really wrong here?

Please help,

Laurie

I would contact his oncologist and let them know what is going on. By month 2 my pain had decreased a lot. I was still supplementing with the PEG, but most of my calories were by mouth. everyone is different and reacts differently to this stuff. I had a terrible time during the TX, but recovered sooner after TX.

Laurie,

Sorry to hear Roy's suffering so two months out. Hoping his docs can quickly help him over the hump. Good luck

My pain is worse 3 yrs later and eating is a challenge. It's a force feed for anything, but am down in the 140s again.that is 80 lbs gone but make your hubby keep trying. Maybe he has scar tissue and rad burns that won't improve but could get worse. As my Oncologist told me to get used to it and go on like yu have been.

Laurie, I am sorry to hear Roy isnt doing so well right now. At the 2 month point he should have 'climbed out of the tunnel'. Of course, everyone is different. Most take 2 or 3 weeks and start to slowly recover. The process is long and hard, most of us take 2 steps forward and 1 step back. Sometimes its 2 steps backwards to 1 step forward. It can take a year or 2 before he is back to almost normal. Fatigue can sick around for a very very long time.

Has his pain meds been decreased? Did he go off the fentanyl patch (not sure if he had it)? Alot of us have taken oxycodone for breakthru pain and been on the patch. Is there anything you can think of that has changed since he finished treatments?

Pain is unfortunately normal. Some lucky few dont have it too bad while others suffer for a very long time. Increased pain should be something you would discuss with his doctor. I would call and have him seen sometime next week.

Nasuea meds didnt knock me out at all. Maybe try giving him only 1/2 a dose of that. Encourage him to swallow at least water daily. Bigger problems will happen if he loses that ability. He will then need to relearn to swallow which can be a long process. It sounds like he may be malnourished and dehydrated if he isnt able to get enough in. How are his feedings done? Does he have a pump? If not ask for one. Slow down the feedings and add some water to it and his nasuea will decrease. Make sure he is sitting up or propped up to get the feedings. Remember he needs 2500+ calories per day and minimum 48oz water daily or he will feel awful!!!! Healing takes alot out of a person and burns up calories very quickly.

Many patient and even their caregivers take antidepressants. It might be something he needs to help him get thru this.

Best of luck with everything.

I was on my peg tube for 18 months. It takes longer for some than others. Everyone heals at their own pace and according to their own situation. Pain meds didn't do much good for me anyway, and they always made me nauseated and sick, so I weaned off of them and just learned to take tiny baby steps about eating in spite of the pain. The formula I was prescribed was Jevity. That did not make my stomach upset. However, there are a variety of formulas out there so let your doc know about it and he may be able to prescribe something else. As I was weaning myself from the peg feedings, I would supplement with Ensure Plus Chocolate flavor. It took me over 45 minutes to drink just one can at first. Over a few weeks time my swallowing muscles got stronger and started to function better so it took about 15 minutes to drink one can. Eventually I worked up to only taking about 2 minutes to drink a can. Remember everything has to be re-learned. It takes time and patience. If it doesn't work this time, try it again another time. I still do that. Tonight I had pizza! Although I cannot eat pizza dry the way I used to do, I can eat it by dipping it in marinara sauce. You just have to learn how to adapt and make things work. Good luck!

Thanks everyone...I appreciate all the help, understanding, and encouragement.

I will be taking him to his MO this week, and hopefully we can get to the bottom of why his pain is increasing. He decided to try and do half of a feeding at a time, and that seems to have taken care of the nausea problem. Naturally it takes more time this way, but it's worth it. I'm trying to pay more attention to his calorie intake now, since he lost no weight during treatment but has lost 30lbs since. The reason for my distraction has been my grief over the very sudden loss of my Dad. It was during this time that Roy seems ot have gone downhill. I guess this means he still needs me. It's just been a difficult time for us in may ways.