I have never had to do this type of thing...so please bear with me. I have never even posted anything besides facebook so I hope I'm getting this right. My father has been diagnosed with stage 2 squamous cell carcinoma located at the base of his tongue on the left side of his throat. Otherwise known as "Throat cancer". He is 78 and had his first treatment of Erbitux chemo and radiation yesterday. We live in a small city in MI where there is a limited population of people with this type of cancer that are willing to talk to others about their experience. What am I asking for? Well, let's see...is my father going to be strong enough to get through all this treatment? He is in good health in so many ways for his age. You know the usual stuff, good strong heart,healthy lungs, no major health problems that so many elderly people have. The major problem that I see with him is that he is VERY thin. He is 5'6" and weighs in at 150#. A PEG line is being placed tomorrow morning and I am hoping that we can start getting some nutrients in him after that. This morning after his first treatment he is not doing well at all. I managed to get a bottle of Ensure in him but that was about it. He is so tired and cannot warm himself. His fever was at 99.1 and I gave him some liquid Tylenol. He is on a Fentonyl patch and they gave me a liquid compound with Lidocain to ease the pain. He is also experiencing a massive headache symptom at the base of his neck, which is normal with this type of chemo. But I am astounded by how "out of it" he seems. Is this normal? When I spoke to the nurse at the Oncologist's office she assured me that he would be "OK" and that if his fever got higher than 100 to call and they would take a look at him. Is there anything else I should be doing for him? Any suggestions on how and what I should expect? Will these symptoms get worse with his treatment or will his body adjust? Should I encourage him to get out and do things that are his normal routine things to do? Or should I be encouraging him to stay in bed and rest? What is the best way to go about all of this? I'm so scared because he is reacting so fast to this and he hasn't even gone through a full day yet. Anybody? Thanks, Susan

Welcome Susan - You will get many answers to your questions in here, because so many have walked the same path as your Father. I know you will be asked if he will be getting radiation treatments also? And if he is going to a CCC (cancer center). His good health will be an asset for sure. Anyway, I can't help you directly but keep checking back because you will get a lot of comfort, answers, and experience from these wonderful folks who have "been there". Let us know how he is doing, ok?

Susan,

I am in South Haven Michigan and was treated at Lemon Holten Cancer Center if Grand Rapids (if that helps) Where in Michigan are you?

I am in Traverse City. Very private individuals up here.

He is receiving radiation at the same time as his chemo. Chemo infusion on Mondays and radiation 5 days per week. So darn scary for someone who is 78. Darn, darn CANCER!

Hi Susan & welcome! Your Dad has a way to go. I had about 38 radiation treatments & 4 chemo. The 4th-5th week of radiation is when you start feeling really bad. 21 days after the 1st chemo, my hair started falling out (not a real lot) I wish I could tell you that treatment is a walk in the park...but it just isn't. This is a tough cancer. He IS going to feel very, very tired. I wish he wasn't starting Tx w/ a fever? That worries me a little as a fever is a warning of an infection...but again, I'm NO doctor. I also got the peg, I'm glad I did because after 4 weeks my mouth was so sore, I couldn't eat anything. I also had a "medi-port" put in. It is a central spot were blood can be drawn (in place of always finding veins for IV etc) Mine stayed in for almost 2 yrs. Don't worry about either the peg or if he gets the medi-port "procedure" as it is not so bad & the benefits are worth it. This is enough for you to digest for now! You (both) have a long road ahead of you, just take comfort in the fact...you are not alone. You "Post" as often as you need w/any ???? you have. This site is filled with the best new friends you could hope for ! You sound like a very devoted daughter & your Dad is blessed to have you. Stay in touch!

Welcome to OCF Susan!

Hi Everyone,
Daddy had his PEG placed on Wed. morning and had a rough go of it with nausea and vomiting yesterday. But today he is doing much better and we actually ran some Ensure through it just fine!! However, when I went to put more in him later in the day the fluid kept backing up in the tube and running out. Of course the Dr.s office is closed now and I can't ask them any questions as to whether or not this is normal. Do any of you have experience with PEG tubes? Is his stomach just full or is this how the tube just acts sometimes? Any advice? Thanks so much for all your responses! This sight is going to be a God send!

Susan

First thing to remember is that the PEG has to be pressure rinsed with water after each use, using a syringe or two or water into his stomach. Ensure and other things will harden and clog it up. This is probably what happened. If you have a clogged up tube, you need to try to clear it using hot water and pressure with the syringe, or carbonated water sometimes works like club soda or tonic water. If you can't find that around. a can of coke or something similar might help clear it . If you use that, then rinse the tube with fresh water after the coke. This is likely not backing up because of anything in his stomach. Post again as soon as you have tried pushing water though it with the syringe.

Would someone please explain to me why it seems almost univeral that these surgeons put the PEGs in and there is no follow up to see that the caregiver and patient understand how to use them.

I had to beg, borrow, and steal to get home health out to help us when Bill's PEG was first placed...jeez..unneeded stress during a very stressful time. The MO's nurses finally got involved, made phone calls, and got the ball rolling as we had nothing..no supplies, no training...it was just me and a pretty sick hubby and this PEG tube that at the time seemed an alien object connected to my spouse. Of course, we learned that it was a pretty simple process, but at first, we needed help and support.

This was before I put my "Nurse from Hell" hat on...I know better now how to advocate for my patient.