This is the first time I've posted anything, but I've been reading a lot of information on here for a few months now. We knew absolutely nothing about oral cancer before all of this. Thanks to this site, I feel like I at least have some kind of idea as to what what's going on so thank you! My dad was diagnosed with BOT SCC which spread to the lymph nodes in both sides of his neck. He finished his last radiation treatment last week. He was supposed to get 7 Erbitux treatments, but his mouth was so incredibly sore and in such bad shape after about 4 treatments, they decided to stop those. He has a PEG which I think has been wonderful for him (but of course he hates it). He's discouraged because he thought he would be feeling better by now, but he's not. He also thought he would be able to get the feeding tube removed as soon as treatments stopped, but the dr. told him he should keep it in about 2 months. He's a very strong man and wants his life back the way it was and is having a very hard time accepting that he's sick. I know everyone is different, but how long does it usually take them to start feeling better. He's 70 but he's strong and healthy (besides the cancer). Also, it looks like the cancer has responded well to the radiation. We're expecting a clean PET scan in a few months. Is the being overly optimistic?

Hi:
Glad you found this Forum - it does help to correspond with other who have gone through the same thing your Dad has. I didn't have the same oral cancer your Dad did, but there are a lot of others on this Forum who did, so you will be hearing from them soon. Yes, the feeding tube is unwelcome, but most of us who had one, found out they needed it later in their treatments. My mouth was so terribly sore, I would have starved to death had I not had one. I think I kept mine in for about 4 months. It's important to keep eating orally though, even with the PEG because it helps maintain the swallowing capability. Usually I did the liquid supplements, or whatever other kinds of food I could tolerate. I wish the very best for your Dad and he is lucky to have a wonderful caring person like you to be his other caregiver. Keep in touch.
julieann

Hi, SoSad

You mentioned that "He finished his last radiation treatment last week."

You can give your dad some good news - this is the worst week! Next week may not be so hot, either, but the week after will likely be better. He needs to think in terms of weeks or months, not days. It is VERY frustrating, especially if your dad is used to being active. My husband needed a lot more sleep and rest after therapy - that frustrated him, too. However, the combination of gradually increasing activity, and rest when needed, helped him get back most of his strength and stamina.

As Julieann noted, nutrition and hydration are key for healing and feeling well!
Maria

The saying goes "Radiation, the gift that keeps on giving". Yes, actually for a while he will feel worse but that tapers off. Basically, the inside of his throat continues to cook for a while after radiation and then takes it's sweet time healing. Food will probably taste strange, if not dowright awful, for anywhere from a couple months to (in my case) a year and a half. I spent that time living on Ensure Plus and fruit smoothies as solid food tasted awful and my mouth was really dry, and still is dry. Biotene maks a whole line of products to deal with dry mouth which has made a huge difference for me, It's available at most pharmacies and supermarkets. Well, however long it takes, most things do improve, and those that don't, he'll come tothink of as the "new normal". Best of luck on Dad's recovery.

Welcome to OCF. It can be very frustrating to the patient when they are not instantly back to how they were before they had cancer. Since your father only finished treatments a week ago, he does have a while to go before he recovers. Tell him to take things day by day. the better his nutrition, the faster he will bounce back. Make sure he gets a minimum of 48oz of water and 2500+ calories daily. He needs to keep swallowing every single day too or his muscles could 'forget' how to swallow. Much easier to struggle by taking small sips several times per day than to relearn the whole process. Most patients will begin to feel a little better after 2 or 3 weeks post radiation. Its a long process but healing will happen faster if he adds some high protein powder to his daily formula. Have him do small goals every day. Maybe walk to the mailbox for a couple days, then to the end of the block building up to going around the whole block. This will help him to see he is making progress. Some patients (and caregivers too) suffer from depression and need counseling and anxiety meds. Everyone is different and will respond to everything in their own unique way. Do the best you can to be positive around him. Make sure you always take a few minutes everyday for yourself too.

Best wishes with your fathers recovery!

Welcome!

I second what everyone has already said. The key to him feeling better will be time, hydration and nutrition. He has to remember that he has just put his body through alot and he needs to be patient with it healing properly, everyday will get better.

Best of luck!

SS, adding my welcome. It sounds to me as though your father has come through well considering. Which is to say everything is relative in this nasty business, but the goal is being cancer-free which I'm hoping will be the case for him.

Yes, the few weeks after RT can be brutal. But they pass, and it's great that he has you to help him through it.

I actually think he did himself a great favor getting the PEG. I didn't and I wish I had because I found it nearly impossible even to drink water with all the mouth sores and dropped 30 pounds during treatment. And I was in no way overweight to begin.

Give him all our good vibes because everyone here is pulling for him. All the posters who've preceded me are veterans who always come up with excellent advice. Time, time, time... like everything else, healing from a tough treatment like his will take a bit more of it than we'd all like.

Courage!

oh and PS, you didn't mention whether or not they'd tested him for HPV, and if he saw a dentist pre-RT to get fluouride trays and/or had his thyroid levels checked.

He will be feeling better soon, depending on overall health etc, it takes a few weeks but then slowly he will climb out of his hole... Welcome, and take care!

Thank you all for your kind words of encouragement. It's all good advice, the problem is, trying to convince him to do anything. If he doesn't hear it directly from the doctor, he doesn't really believe in it (and that's difficult because he hasn't seen a doctor since the day before his last treatment so he won't see him again until next week). I find this whole thing strange. I can't believe how little he has seen a doctor throught this whole process. He saw the radiation dr once a week and the chemo dr once a week, that's it. The nurses at the chemo office were helpful, but like I said they stopped that treatment after a couple weeks. So, he mostly saw the girls at the radiation office, but they weren't nurses, they were just techs. I just kind of feel like this was dumped in our laps and we kind of had to figure out how to deal with all of it on our own.

Anyway, David 2....Yes it's HPV, no they didn't check his thyroid and no he hasn't gotten any fluoride treatments. The dr talked to him about possibly having some teeth pulled before the treatments began, but he was too anxious to start on the treatments. He already has partial dentures but they don't fit anymore. So I guess we'll have to see what happens with that after we're done with all this. Honestly, we haven't worried too much the teeth. We've been more focued on everything else.

Wow, I'm just realizing how ignorant I sound...I'm sorry!

Teeth are actually super important he should have had them pulled - generally they only leave them if they think he will keep them for the rest of his life since having one removed post treatment involves HBO dives (upwards of 30) which is 2 hrs a day in a chamber - to promote blood flow and healing to the jaw. Radiabon can cause osteonecrosis which ultimately could cause him to lose his jaw - or part of it. After he's on the mend I'd make an appointment with a dental oncologist who deals with cancer patients and have a set of trays made. Also oral hygiene is super important - Radiation is the gift that keeps on giving. Also print off some post rads info, maybe reading what others have been through will help. Take care!