My Dad (stage 3 floor of mouth, spread to lymphnodes, left side) just finished radiation on Thursday(today). On Monday I went to Dr. w/ him and he told them about the problem w/ mucous production which had started after last Chemo. on previous Friday. They prescribed Diflucan for fungal infection in mouth. Thursday he went to his GP because it was not getting any better and completely keeping him from eating. They prescribed one medication for mucous and one for saliva and scheduled follow-up for two weeks out.

After reading posts I see this is "normal" side effect and I did get some ideas, however in the mean time Dad has lost 9 1/2 pounds in one week...I am very concerned regarding his ability to intake food right now. He is not on a PEG...obviously. I mentioned that he may want to consider a trip to the hospital for an IV...but he seems focused on the Doc (radiologist) telling him he would see a BIG difference in 7 to 10 days and thinks he can hang in there. I am thinking about calling Doc and letting him know that he has lost 4 1/2 pounds since Monday.

Any experience with this from you all?

Thank you a million in advance...your posts are always encouraging and although I have not posted much in last few months I have read tons (Carnation instant breakfast tip from Gary) and passed them on to Dad.

Tabitha

Hi Tabitha,
I don't want to give you false hope but in my case it was much longer than 7-10 days before I saw any "big difference". In fact, it was more like 6 weeks before I saw any difference at all! The radiation effects continued to build for at leat 3 weeks post treatment. I ultimately lost 60 lbs., got down to 109 (my wife tells me I look like Ghandi). I am up to 115lbs now. It took a very long time to turn around the weight loss. Dehydration can be a serious problem and you must watch it very closely normal fluid intake should be around 2-3 liters a day. I still wonder if I would have been better served with a feeding tube.
I eat ice cream almost every day (by doctors orders). I also supplemented the Carnation instant breakfast with a milk shake to keep the calories up.

Gary,
Thanks for your post. He has lost a total of 22 pounds right now, down to 150 1/2. I know he is drinking Gatorade, but I will check and see how much and tell him about tracking his liters. He was drinking shakes also, but with the mucous that is occuring right now he cannot get one down. Yesterday he spent an hour eating 3/4 can of peaches, and then of course it almost all came up later.

Dehydration is my concern right now also. I will tell him to be aware and check on him regularly. He is sort of, actually very, stubborn and prefers to manage his own care (pride)but he does listen when I suggest things, so I will make some suggestions based on your post.

I also think I will callDocs and get some guidelines and things for him to watch regarding dehydration occuring.

Thank you, Gary and keep on eating!!!!!

Tabitha
Father diagnosed 01/03
Floor of mouth, lymphnodes
Stage 3
Chemo/Rad Treatment
Started 04/03
Finished 07/03

While his treatment may be over, at least for me, this was where I was most surprised by things.... I was actually starting to feel worse not better. The effects of the radiation are accumulative, and just as the first couple of weeks are not that bad, the radiation is still doing damage for a significant period after the end of treatments, and things are still turning into mucocitis and phlegm. Everything that you are describing that he is going through is in the realm of normal side effects for what he has been subjected to. What you and he may not be prepared for is the length of time these things hang around. MDACC told me to expect a month of recovery for every week of radiation, and they were not far off. That was to get past the sores, mucous etc. That did not mean that at that point life returned to normal. I was underweight, weak, depressed, still had a routine occurrence of Candida every few weeks, and I was fairly well addicted to some hefty painkillers. There were many more months of issues before I was even close to normal, but certainly, not even then, like before treatment.

If he had field radiation and not IMRT, the side effects and issues will be around longer, as more tissues have been damaged by the treatments. I am really surprised at any doctor telling him that it will get better in just over a week. My own experience was relatively normal, and if you read others posts here, you will find that months, not weeks is typical. Given that longer time frame, it is possible that his nutritional deficiencies will pose a greater problem than his doctor is planning for, and as Gary has pointed out, hydration could also be an issue. Your father should be keeping a log of everything that he eats or drinks every day. That way someone besides him can be monitoring the whole thing, and catching any issues before they become huge problems. Read the labels on the cans of cold fruit, Ensure, or what ever, and count the calories and nutritional information getting a total for the day. Be particularly aware of not only calories, but protein. He definitely isn

Tabitha, for what it is worth, I produced a steady stream of what I likened to wallpaper paste for precisely 21 days. On the 22nd day, it tapered to practically nothing, and two days later was gone for good. But that is three weeks and I had a PEG. So this will most probably not end quickly for your dad.
Joanna

Tabitha, I don't know what big difference there is within a few days on your dad's situation. When I lost about 10 pounds,my oncologist admitted me to hospital by order already. I was still in the middle of my treatment. I could neither eat nor drink. At least in the hospital, I was closely watched by nurses and doctors day and night. I was discharged after three weeks when my weight stopped dropping and could handle some congee and milk.

Karen stge 4 tonsil cancer diagnosed in 9/01.

Hi Tabitha, I have a slightly different view. My recovery after the end of radiation was noticeable within the first week. I lost 30 pounds ending with 155lbs. Yes you should watch out for dehydration. Brian's comment about protein is also important. The body needs a lot of protein to rebuild tissue that was blasted by the radiation. Hang in there, your dad is fortunate to have you looking out for him.

Well, thank you everyone for sharing all of your experiences.

I did call his Docs and they gave some ideas...but most importantly confirmed that if needed get him to the hospital for an IV. Which I told him is always an option.

It is hard because he figures he is eating about 800-900 calories/day. The nurse did say to worry less about weight loss right now and more about consuming liquids.

I have taken notes from all of your replies and will share them with him. When I told him that I read about other people experiencing the problem with mucous he was surprised and comforted by the fact that this is something that people who go through this experience.

Again I say all of you who participate here are a huge blessing to others, whether they post or just come in and read...you will never know how many lives you touch!!!

Mark thanks for the encouraging post...I know that everyone is different and it is good to know that there is hope for some quick signs of improvement. However it is also good to hear that we may be in for a long haul too, so we can prepare for whatever road this will take us on.

God Bless You All...and as always you are in my prayers.

Tabitha