Hello! My name is Jennel, Jenny as my dad would call me! My dad is who im asking help for. He was diagnosed with oral cancer early in the year, stage III I think, maybe if he is reading this he can join up and tell us a little about himself. He is about 8 weeks post radiation/chemo treatments. He had radiation daily mon-fir for 7-1.2 weeks and chemo once weekly although he did miss a couple chemo treatments due to being so sick. The thing is, is that he is still feeling verrrrry terrible. Last week he went to the hospital becuase he was vomiting so much and began to vomit blood. They did a test that just showed that he was swallowing blood from his esaphagus making him ill and also reflux. He has a feeding tube. He said that his mouth sores and mucositis is getting better a little bit and maybe his throat also, but now he is still nasuated and sick often. he doesn't do much in the way of mouth wash or anything. he has been depressed and very scared of dying and very scared that he is never going to get better. we do not know the results of the chemo/radiation yet, but were given about an 80% chance of kickin the cancer in the butt before treatment began. he does not smoke and has not for about 15 yrs.
i thought maybe this forum may help him in many ways. maybe you all have ideas of your own that may make him feel better if we can get him to try other things. Or have some words of encouragement to help his state of mind, because i believe that maybe if you feel in you mind that you are not going to get better than it plays a roll on your rehabilitation.
I also had a question about the reflux and his feeling nasuated all the time, do you think maybe he needs something a little thicker in consistency in his tube to keep things down?

Hi Jennel,

I'm sure you'll get tons of responses but one thing to keep in mind is the recovery from the chemo and radiation is a long rough road. My mom was very depressed for a time and now finally almost 7 months post radiation she is really starting to feel more like herself. It is very difficult for us to see our parents suffer and watching my mom go through all this was by far the most difficult thing I've ever had to do in my entire 35 years of life.

Right now your dad is bascially at the turning point where things should start to get better. I think for most people going through it the last week and the first 3-4 weeks after treatment were the worst.

Please let me know if there is anything that I can do to help. I'll be keeping your family in my prayers.

Dani

Jennel, Welcome to the site. Sorry you had to be here, but hopefully we can help your Dad get on the right track. What type of cancer did your dad have, was it tonsil or tongue or somewhere else? How is it rated, ie: stage IV, III, or something else? We can help a lot more with some specific information. It would be good if he joined this site and could give us some information. I can say that as Dani mentioned above, your dad is at about the time for things to get better. I had bad vomiting and bleeding after chemo and rad treatments as well, most of us did. That's just part of the treatment and quite common. You are right, also, that a positive attitude helps a lot in recovery and a negative attitude is detrimental to his getting better. Help him to be positive that this treatment, while it was difficult, is over and blue skies are just around the corner. If you accomplish this, things will get better for him in my experience.

With his reflux, is he taking medication for that? I had bad reflux all of my life and just started taking Nexium for it before this cancer thing started in 2003. My reflux is almost all gone and I take only Nexium now. I used to use 10 to 15 Rolaids per day, now am at 0 in months. The chemo is supposed to have helped that. At any rate, try to get him reflux relief. That in itself will brighten his day.

I also had a feeding tube and was very greatful that I did as I couldn't take anything by mouth for a couple of months after treatment ended. I only used Ensure type products so I can't comment on thicker things, but be careful because the tube can get stopped up and can be difficult to clear.

Let your dad know that he and you will be in my prayers. We can assist him more if we have more information.

Hey Jennel,
Welcome to the board! My husband, Dan, started to feel better 8-10 weeks post chemo/rad treatments. He was prescribed a liquid called Nutren 2.0 which was a bit thicker and had more calories per can, so he didn't have to take in more than 5 cans a day. After he could eat some, he still had reflux which was a problem before the cancer. He has been taken Protonix (prescribed by his oncologist) and that has put that problem at bay. It is so hard to see the one you love suffer so much, but I prayed everyday for God to give me strength to be positive and for Dan to feel better. There is light at the end of the tunnel and your dad should start feeling it soon. You will be in my prayers. Make sure you have a great support system in place for both of you...it was so important in the healing process for us.
God bless,
Debbie

Jennel,

Welcome to the OCF forum. I'm sorry to hear what your father has been going through, but unfortunately, as others have said, the recovery from radiation is a long, slow, painful process. Is he being treated at a comprehensive cancer center? How often is he scheduled for followups with his doctors? (They should still be fairly frequent at this stage, so they can continue to watch for any signs of trouble.)

You mentioned that he isn't doing much for mouthwash. Oral hygiene post-radiation is extremely important to try to fight off infections, and your father should be getting advice from dental professionals that are experienced with the effects of radiation.

Please encourage your father to get on this site also. There are many here who have been through similar experiences and can offer support and advice.

Cathy

Jenny,

I am glad you are here but sorry you have to be. Encourage your dad to float around here for a while and see what others have done. We have all been scared and we have all felt maybe the future wasn't looking so bright. You just tell him, "Dad, someone told me there was a study on the news during the past year that said they looked at 50 lung cancer patients and their attitudes during treatment. The determination was that there was no significant difference on recovery because of a positive attitude but every one of them agreed it was sure a lot easier to have a great attitude."

It will get better but as mentioned, you need to get the pain and the continual sores under control. They could be mucositis or they could be thrush (a yeast infection). Both hurt and both need to be treated with mouthwash products and/or antifungal medicine like Diflucan. Also, the nausea is treatable and there are at least a dozen options. Continual vomitting will lead to severe dehydration that will make things worse, especially digestion. Get the pain and nausea under control. Go with him if you can and do not let the doctors release him until they fix those two so important problems.

The road ahead will get easier. Tell your dad we are all here for him and just make a list of the questions or problems he is having and we will adress them one at a time until he is satisfied. No topic is off limits and his recovery is of utmost concern for all of us!

God Bless!

Ed

hello! Thank you all for taking the time out to reply to me! I'm going to try to answer all of your questions, please remind me if i've forgot something! Here i go.
He was diagnosed with cancer on his tonsil stage 3. He had IMRT Radiation treatments 5 days a week and 6 treatments of Chemo. For his stomach he is taking Prevacid for the acid reflux and nausea he is taking Lorazepam. For Pain they just put him on Duragesic 25MCG/HR. He goes back to the doctor on the 30th. They mentioned Mexium and Protonix, I wonder if they are better medicines for the acid reflux?
I asked him today if he has been keeping up with mouth rinses and such and he said that he doesn't need to because he feels his mouth and throat may be getting better now. I really don't know what to say because it is not my body and I really don't know what he is going thru (I never had cancer before), but i DO know that he should be keeping up the oral hygene. I am in the first stages of nursing school and i do know that much! He is very hard headed lol! My mother and I have been trying to get him to get on the forum, but he is really feeling sick so he hasn't been able to get on yet. I know he is frustrated, because he did expect to start feeling better by now. He is scared since he has not gotten better yet. The Cancer Center where he goes (Willamette Valley Cancer Center)did stress that it will be a long hard road, but i guess ya don't really realize how long it really is untill you have to live it out!
also, Kirk about your reflux, they put my dad on prevacid, did you ever have that? also the drs mentioned Mexium and Protonix, I wonder if they are better medicines for the acid reflux?
I think my dad is also greatfull for the NG tube since he cannot eat or drink anything. How long after treatment were you able to start swallowing? what was it like?
Debbie how is your husband? thank you for your prayers....they help!
thank you everyone for your support!! it really helps!

Jen, tell your dad that in another part of the world here there is a 3-year stage 4B tonsil cancer survivor supporting him. I went through most of the things he is experiencing now. My doctor only gave me less than 50% of the chance that chemo/radiation could kill all my cancer cells. I made it 100% after treatment. Here I am now working normal, eating normal, playing normal and sleeping normal. Tell him not to worry about things that may not happen. There is always hope in our life and things can turn better. He is very lucky to have a caring daughter looking after him.

Karen.

Hey Jenny,
Dan is doing pretty good. He still has to take Protonix for acid reflux. His scans so far have been good. There are areas of concern, but nothing alarming at this point. He has an oncology checkup once a month and a checkup with the oral surgeon once every two months. He has a PET/CT scan every 3-4 months. He has pain in his shoulder from the rad. neck dissection but physical therapy is helping. He has trismus (lockjaw) and that seems to be the slowest to get any better. He can almost get two fingers in his mouth and that might be all he regains. Most people can get at least 3 fingers in their mouth. He can't bite into a sandwich and still can't taste most foods. The docs say whatever you have in the way of taste buds a year from end of treatment is what you will have. He had pretty aggressive cancer, so I thank God everyday for the next day.
God bless,
Debbie