Hi, I am Karen, wife to Kevin age 49 who has stage 4 squamous cell carcinoma, primary base of tongue, spread to neck lymph nodes. He is 12 days out of treatment--1 round cisplatin (stopped because of hearing loss) and 5 rounds carboplatin and taxol. Simultaneously, he had 35 radiation treatments.

He is in a rugged place with lots of vomiting and throat pain, but today is a better day than the weekend, so I guess it is a good day.

Hi Karen,

You have come to a wonderful place for support and information. We all know how you feel and what Kevin is going thru.

To help us help you with any posts, take the information you first posted about his diagnosis and treatment and put it in your signature (see mine??) You can do that by going to top of page, "My Stuff", then profile, and you will see the place to enter the signature information.

Welcome to the OCF boards,

Deb

Welcome, Karen. You have come to a great place for support and encouragment.

OK, here is the signature, let's try it out. Thanks for the welcome!

Welcome Karen,

My husband had a similar cancer location and treatment. Two weeks post treatment he hit rock bottom...then it got better bit, by little bit. He's now 2+ years post treatment and all is well.

This recovery part is hard, I wish you and your husband well!

Hi Karen and welcome. My husband's diagnosis also sounds similar to your husbands although my husband never smoked a day in his life. Unfortunately my husbands' hearing loss didn't show up until the end of treatment. Being a caregiver is a TOUGH job. Better days are ahead but they are probably hard to imagine this soon out of treatment. Hang in there and feel free to ask ANY questions. You have found a great source of support and information.

Here is a question for the day: Do all of you stay home with your spouse? I can't because I am a teacher and the insurance holder. I am at work from around 8 am to sometimes 3 pm, and while I am gone he doesn't move even to get up and feed himself. He is asleep much of the time, but when he is awake, he can't care for himself at all. So when I return home, he hasn't eaten for HOURS and it makes it so hard to get the quantity of cans and water in him before I go to bed at night. What to do? Today makes two weeks since treatment, and I am sure he has lost weight between the throwing up and the lack of nutrition. Before treatment was over, he didn't throw up and I could put more through his tube. Now he is reluctant to let me put much in.

at a loss on all fronts these days...

Karen, this is such a difficult time. Most people do sleep through this part post treatment and it is very easy to get dehydrated...especially if he is not getting enough fluids AND throwing up.

I was able to get a visiting nurse through our insurance company that came and gave Dan hydration for a week after treatment. I wonder if you could get the same and they could give him hydration and nutrition if he has the PEG.

When was he last seen by one of his doctors. Is there a concern that he might be dehydrated? Is he losing weight?

I dont know if he has a pump for his food or if you are doing it gravitationally (is that a word)I was able to get a big bag for the food and set the pump to put it in at a certain rate per hour. Then all he had to do was add a can of food at around lunch time. It will begin to get better soon, he is still dealing with the radiation "poisoning" that happens. You should start seeing some improvements within the next week or so.
Im so sorry you are going through this, hang on the ride should get smoother.

Karen,

Good points from all. Your insurance company should allow you a visiting nurse and perhaps you can get his MO to prescribe a pump for the feedings. A lot of patients here had less nausea and better tolerance to the supplement when it was pumped in slowly over a long period of time. He can just lie in a lounger or in bed (slightly propped) while the pump feeds him. I am sure that trying to get enough food in him is hard. I was home full time and still had to chart all the Nutren and water to stay ahead of the game. Your docs should understand what the situation is and provide help toward optimal hydration and nutrition. Does either the RO or the MO have a nutritionist on staff?
It is still early in the game. but with the proper food and water, Kevin will probably see improvement slowly over the next few weeks.

Deb