Hello,

I have been browsing this forum for a few months now and it has been a great help in terms of information. My father was diagnosed with Stage IV oral cancer with a tumour in his left cheek. Had surgery in April 2013 to remove the tumour. Radiation treatments were delayed as he got an infection. Cancer came back on July 06/2013. Radiation started the next day. He underwent 35 radiation treatments and 2 chemo (carboplatin). All treatments finished on Aug. 28th. Since then, his recovery has been slow and we've had to visit the emergency room twice as he had fever. He is also recovering from an episode of shingles. We've met with the radiation oncologist twice since he finished his radiation and they have said there is recovery and it is positive. Lately, my father seems to be frustrated and depressed as he feels low energy and feels he is not recovering quickly. It has been close to three weeks since his last radiation and his face seems to be healing very well. He is not able to eat and is being fed through PEG tube. From time to time, he does have bleeding in his mouth from the radiation and on a few occasions, he has coughed out a ball of dried blood. Not sure if any of you have experienced this but any thoughts on recovery timelines and advice would be much appreciated.

Thank You

Wow - he's had it tough. Fresh blood is not good but if it is small amounts then it could be from ulcerations and open sores. Large amounts require a trip to the ENT again. That said. It's normal to be depressed, eating is such a big part of our social life, and normalcy. Has he tried to take things by mouth? not taking anything at all can be detrimental and have him on a tube for the rest of his life. Perhaps you can ask for a magic mouthwash prescription to numb him and have him try a little mild warm soup, something easily swallowed and digested. Maybe a little pudding something that might spark him up and make him feel a bit better. Sometimes even small steps can brighten a person's day. It's a long recovery for someone with no complications so I am sure he's quite down.
It's generally a month for every week of radiation, but I still notice monthly improvements 2.5 years out. Tell him to hang in there. This is all very normal. Rinsing frequently, will help make him feel fresher and cleaner inside his mouth, and maybe prevent infection etc... hugs and hope he feels better soon. Its hard to watch someone you love suffer.

Thank You Cheryld for the kind words. Yeah the radiation oncologist said they gave him quite the strong dose for radiation so it seems the bleeding is from open sores. It has gradually decreased but the doctors say since he is still bleeding, giving anything through the mouth is not recommended, so for now he is on PEG. I do feel that once he can start eating through the mouth, his recovery will be quicker and he will feel better mentally.

My heart goes out to you, it is so hard to see your Dad suffer! I know from taking care of my own Dad how hard it is to feel helpless. Any day now your Dad is going to wake up and not feel worse than yesterday.....and then he will wake up and feel a tiny bit better, week-by-week.

I do not have experience with a PEG but just want to throw the thought out there that some people feel better using the PEG for real food, instead of just shakes. If your Dad's docs are okay with that you could give it a try and see if it helps. There are some web sites with recipes and guidance on using a PEG for real food; PM me if you want a few links.

Good luck!

Sorry for your troubles. It can take up to a year or more to recover from some sides effects from treatment, so it's still early. Not consuming enough nutrients, protein, can effect ones energy level, and recovery, and so can dehydration. Chemo and radiation can impair the thyroid, hemaglobin, kidneys, bone marrow, testosterone, B12, amongst others, which can cause tiredness, so having these checked may show any deficiencies. Pain is another issue, pain meds, not sleeping well, and lack of light exercise, like walking can effect one's energy level. These probably fall under something called CIF, chemo induced fatigue, and say taking care of what you can, may help.

Good luck.

Hi - so you're in Toronto did I ask you before where your dad is being treated? My drs all pushed me to eat if I could even though my mouth was raw. - tell him at the very least to rinse frequently - using baking soda/salt/water or flattened club soda - which he can swallow. I am surprised your drs said nothing by mouth. Nutrition and hydration is very important - the want to stave off infection - I get that - but rinsing thoroughly after he eats is really all he needs to do.
Are you guys at PMH? Hugs