problems after treatment - Oral Cancer Support

My dad, 73 yrs old, just completed 7 weeks radiation therapy. He also received 7 Cisplatin treatments. Besides the fact that he is having the horrible mucus problems we also have other issues. He is very weak, has lost 4 pounds in a week, his blood pressure is low, he is nauseated and not interested in any of the things that usually interest him. He is always in bed now and when he is up he can't grasp what is going on around him. He has a feeding tube, so most of the time we are able to feed him enough. Are there any problems that we should know about with this treatment that the drs. didn't tell us about?

You didn't say exactly when he finished Tx but the 2 to 3 weeks AFTER TXx are usually the worse for everyone and most people are 15 years his younger. I can't imagine what I would have felt like 15 years older and going thru my Tx. Keep the water and food pouring in and he should "start to "come back alive" around the 3rd week or so after treatment ends. It probably won't be gradual during that time...one day he will wake up and feel better and then the recovery will begin slowly at least that's how it happened to me.

Thank You for your reply. His last radiation and chemo was Thursday March 8. The radiation dr told us the 1st two weeks after treatment would be no better than before, but he didn't tell us it would be worse. We are doing our best with the foods and fluids, he can't take anything by mouth. His age is one of the things that concerns us as a family. He was a heavy smoker, liked his drinks at supper time and combined with the stage of his cancer we are worried about his condition. Drs just don't seeam to understand. Sometimes I feel like the patients are just being "herded" through.....

It's really true what David says - my son is 34 (1/20/07) and was feeling at his worst just after treatment. He was weak - I even had to help him from the car to the house at one point towards the end of treatment, and he spent most of his time in his bedroom sleeping. He could hardly stay awake to try to eat or drink something. He lost a lot of weight and didn't have a feeding tube - There were many times I wished he had. He had all of the above that you mentioned with your Dad and it was a slow process (It seemed a LOT slower to me, than it really was!) And he was in excellent shape before treatment and never smoked, ate healthy stuff. It's good that your Dad can get the nourishment thru the tube. It's so important to get enough liquids and food. It is important to keep track of his medications. I had a hard time trying to get my son to do that and I had to put up a chart on the refrigerator and I also got him to put a chart on his computer where he finally started to enter his meds every day. I would suggest also keeping tract of any reactions he has to the meds so you can report anything to the doctor. My son had a reaction to a nausea med that made his tongue go into spasms and found out later from the doctor that he could have taken Benadryl for it. After that he always kept some on hand. A couple of days before the three week point after end of treatment he started feeling much better. About your Dad's blood pressure, is the doctor checking it and letting you or him know what it is? My son always got a sheet showing what the normal range was and if he was within it. There were times when it was very low and just barely within the normal range. So, many of the effects with radiation affect much younger people, too. Working hard to cope with the nausea and the pain while in a weakend state is hard work. I'm sure he will feel better soon and get back his interest in the things that he did before treatment. It does get better. It really does! (for the caregiver, too)

It does seem like forever doesn't it? I just feel so bad for my dad and hope he isn't just giving up. My mom is getting so worn out taking care of him when my siblings and I aren't around. I brought him to the dr this Wednesday because of the blood pressure. We know low blood pressure can mean dehydration. The dr didn't seem concerned, although his nurses thought my dad should get rehydration. The dr didn't suggest that. He just said to get more fluids and sent us on our way. The weight loss was 4 lbs. in 6 days. That was the most he lost in one week since treatment started. I also worry because we were never told his stage until we read the report on his surgery. From what I have read, T4/N2 is quite serious. They removed a total of 60 nodes in his neck dissection. He also has lymphodema. My dad is questioning his decision to have the surgery. Thank you for the reply. I really appreciate it.

Dear Smlahlum, [do you have a nickname?] At his age, your Dad's body has been through a battle akin to being in WW2! And your Mom likely feels like she is a battle nurse! Hopefully, you all will be able to give them both much needed support. You said you Dad had a feeding tube. Tell your Mom to go to a good grocery store or Walmart,etc. and bring in a couple of bottles of Pedialyte[liquid- for children-] Use it along with or as a replacement for water through his peg tube. It will help with the dehydration and maybe some of his confusion. What kind of pain meds. is he on? Could they be causing confusion also? Keep in mind that he may not be "giving up", he just may be exhausted from all of this and needs lots of rest. [you Mom does too] Keep him comfortable, hydrated, and try to eliminate as much aggrevation as possible in his daily life. Give him time to recover from this. Amy in the Oz

Yes, please call me Sue. I will get some Pedialyte tomorrow morning. The nurses have been suggesting Powerade or Gatorade. It didn't sit well with him. His meds are Ativan (.05 ml every 4-6 hours) for nausea/sleep, Roxicet (10 ml every 4-6 hours) as needed for breakthrough pain, Fentanyl Patch for pain. The problem with the meds is that he doesn't get them as often as he probably should. He is in bed so much. I have been reading a lot tonite and I notice that everyone says the weeks AFTER treatment are the worst. Wouldn't the Drs. know this if all the people that have been through it obviously tell them? The mucus problems, I see, are also the same. His portable suction machine is a lifesaver. My brother, sister and myself are doing our best to help them out. I take my dad to all treatments and dr appts. That gives my mom time for her, my brother spends weekends over there and my sister fills in the rest of the time. THANK YOU ALL FOR BEING HERE! I pass all this on to my mom to give her hope too. Thank You! Sue

sm...m,

Doctors....please....what they DON'T know about how we feel during and after Tx would fill the voids of space!!!

So many times I was led to believe by my doctors and nurses that something was wrong with me...that I wasn't handling the Tx very well...that my taste would return weeks after Tx ended...that my dry mouth wouldn't last very long...I could go on and on.

Unfortunately I didn't find this web site until 3 weeks after my Tx ended but I do remember my first post. I was telling everyone how bad I was and how I know my reaction to the Tx was unusal and I was asking for advice. The answers came pouring in that I was NORMAL and if anything was better than normal. I wanted to "kill" all those people that had made me feel deficient. I have since enlightened them so hopefully they don't make those errors again. Every chance I get I go to the ole radiation waiting room and talk to as many patients that want to and I make sure I write down this web address so they have it when they get home. I don't ever want anyone to go thru this Tx uninformed like my wife amd I did.

Sue, altho lots of people here have had great sucess with the fentanyl patch, my husband just went bonkers on it-it caused confusion, halucinations, anxiety. He also reacted to the Ativan badly- the effect on him was opposite of what it was supposed to do. These are powerful drugs and you all will need to moniter him carefully to be sure he can tolerate them. Amy in the Oz

Hi,
I was sicker for the first two weeks after treatment than I thought possible. My radiologist told me it would be just as if I was still going through treatment and he was so right. I felt for a while I would never feel good again, I slept all the time, lived on my pain pills and thank God for the feeding tube I managed to stay alive. But my Dr. also said around the 3rd week I would wake up one morning and feel better and it would just get better and better every day. He was so right. I do feel better every day, stronger too. I am hoping to get back to work some time soon. I still get very tired if I try to do too much but it is so tempting to just do things now that I feel better. I had only 29 IMRT treatments and two cyclplatin doses, I had to quit because i got so sick, and lost so much weight I didn't think I was going to make it so if your dad is doing as good as he is my hats off to him. I am 61 years old so that may be why I am a little slow on the strength regaining side of things but as long as I can get up each morning and feel better, I am thankful. Have your dad hang in there, it will get better.