Hoping someone can give me a little insight. My father was diagnosed with SCC in July of 2003. Had surgery to insert feeding tube and med-port. Since August he has only been able to eat via the tube. He went through 37 radiation treatments accompanied by chemo. He then had 4 sessions of "super chemo". Four full days of chemo, followed by 3 week rest interval. He is having a real hard time with depression, partially due to lack of progress. Doctor says right side of tongue is paralized as well as the throat muscles on the right side. Neck area still swells at night. Horrible headaches. Taking Diludid and Lorazapam, sometimes Morphine. I try to keep his spirits up, but even I am questioning things. My question is, is there anyone who is post treatment this long, and still not eating or drinking by mouth.

Hi Vickie,
sounds like he's right on track to me. My worst difficulties were right about then and that was about a year ago today. Depression is pretty normal too considering how beat up we get. I also remember having headaches and earaches then also. He will sloooowly start to get better from this point. Stay on top of nutrition and fluid intake. Watch for secondary infections like thrush. Progress in early recovery is measured in three week increments. Recovery doesn't start until 4-6 weeks post Tx.

The common misperception is that recovery will start immediately as soon as radiation is done but that isn't the reality of it. Hang in there it will get better. He should start turning the corner any minute.

Gary,

Thanks so much for your words of encouragement. I will talk to him when I get home. Hopefully, sometime soon we will see something improve.

Thanks again.

Vickie M

Vickie,

If I may ask, how old is your father? I, too, was diagnosed in July 2003 and had surgery August 8 for the feeding tube and mediport. I struggled with Ethyol to protect the salivary glands and ended up with a severe allergic reaction to the medication. I have always had a sensitive stomach and I literally puked non-stop from the fourth day of chemo (August) until November. I tried the PEG tube but even vomitted from that. I ended up on TPN feedings through my mediport to balance the nutrition. I just started eating about November and have not used the feeding tube more than maybe 10-12 times other than to flush. I lost 70 pounds Aug-Jan and just started gaining weight the first of March. I know the narcotics did wild things to my mind and especially affected depression. I decided in January to stop all the pain meds and it did wonders to my mental state. I mowed the grass (twice) this week and have been back to work since two weeks after treatment. I also lift weights every other day and rode the bike 7 miles yesterday.

I know everyone is different. I found the key to helping the throat was to literally force sips of water or milk down every few minutes. I used whole milk for the extra fat and calories and also ate a lot of spaghetti noodles. I used Ragu sauce but most people wouldn't like the sting or metallic taste of the tomatoes. It just went down easy and became a staple for me. You have to keep the throat working so it doesn't cause more problems over time. I hope your dad is getting enough nutrition.

Ed

Ed,

Thanks so much for your input. My father just turned 63. Did not have surgery, as it wasn't an option. After the first few radiation treatments, eating by mouth was impossible. He has been on the feeding tube ever since. Does seem to get enough nutrition. He has at least 6 cans of ensure plus. Adds milk and sometimes soda to tube for extra calories. He chokes on flem (?) often. Last visit to the throat doctor, the doctor inserted a camera thru his nose and down his throat to exam area. Said he could see where the tumor was. Area has alot of scar tissue. When asked when we would see improvement he took a wait and see position. I hope everyday to see some improvement, but nothing yet. Keeps a constant headache. Head even hurts on top. He always wore his hair short, but I can't buzz it now, because the top of his head is too tender. I am printing out any message that could pertain to him, so he can read them and hopefully lift his spirits. Would love for him to go on this site himself, but he's scared of the computer. Thanks so much and may God Bless You.


Vickie

I`m going to agree with Ed here on the narcotics, they are downers and can cause depression. And I think we can all agree that depression goes hand in hand with this crap anyway. Everyone recovers at their own rate, but it takes more time than we expect. Also will agree to keep an eye out for thrush, which can create havoc. Just let your dad know to hang in there and things will get better...............Dee

Vickie,

I forgot to mention but it may help to keep your father moving around and walking. Let him walk up and down the driveway with you through the day. Be sure and put sunscreen wherever he had radiation for at least one year after radiation. Another thing, the intestines absorb most of the fluids we need and both chemo and radiation really affect them and it is harder for the body to get the fluids. You almost have to intake 1 1/2 - 2 times the norm. The top of my head and my hair hurt and I have noticed it is almost always when I get dehydrated. When I couldn't get enough fluids through the mouth or tube, I started putting in a bag or two a day through the mediport. Most insurance covers getting set up for this at home. Can you take his blood pressure at home? An easy way to tell is to take the blood pressure sitting and then have him stand up and take it again. If there is a big difference, it is usually dehydration. Especially with all the dry mouth stuff going on, dehydration will escalate thrush and make his throat really sore all the time. I can not swallow when this happens and it happens quite a bit for me. The thick stuff he is choking on could be worse because of dehydration too. I hacked up the worst looking brown stuff from after radiation for almost 3 months and the more water I drank, the better it got. Do you have the docs check his nutrition and electrolytes on labs? Sometimes they do, sometimes they don't, unless you ask.

Things will get better. I hope you are getting enough rest, too.

God Bless!

Ed

Ed & Dee,
I am so greatful to you two and everyone else who has tried to answer my questions. Having a place like this for questions and moral support is wonderful. Nice to know that you are not alone.

Vickie M