Hello, all. I have been lurking on these boards on and off for about a month now. Decided I'd finally get a screen name and post something.
My Dad, who is 69, was diagnosed with back of the tongue cancer in January. He went through the surgery and the doc was able to get ALL of the cancer out; however, he had to take out one of his lymph nodes, his neck muscle, a vein and a nerve. The cancer had spread to all of these areas. My Dad sailed through the surgery and is now undergoing both chemo (given once a week) and radiation 5 days a week. I believe he is getting 36 radiation treatments....he will be to the halfway mark on Monday, March 25.
Things finally started getting harder for him in the last week. At the doctor appointment, he got in trouble for dropping too much weight too fast. He basically lost a pound a day in a weekly period. My mom and I encourage him to eat (he said it would be a cold day in hell when he got a feeding tube), but he says everything tastes disgusting. He says it's more the taste than pain in his mouth/throat. Well, the doc pressured him to eat or he would have to get a feeding tube. So, he is now drinking Ensure and eating cream of wheat with butter. My Dad started this process at 280, so he isn't a small guy. I am praying he can keep this up and make it through without a tube.

Has anyone made it through this type of treatment without a feeding tube? What did you use as your main form of nutrition/calories?

Also--my Dad tested positive for the HPV virus, which apparently can be dormant for decades. He got the shingles last summer, and to be honest, I think having that lowered immune system also awoke the HPV. Anyways, has anyone here had cancer due to HPV? The doctor told him that was actually good, because cancer from HPV responds better to treatment and has a better prognosis.

Shannette,

Tube or no tube has been one of the longest discussions ever had and if your father is bound and determined not to have one then he probably won't get one so encourage him to eat. He is right about the taste. His throat may get quite a bit rougher but the taste will be bad for a while maybe after treatment is done. Everyone is a little different. Use the search feature for the forums and read all you want and then some! It is good to hear that even though it seems rough, so many have traveled the road ahead of your father and I would doubt anything he could experience would be a first! It might help you too to see what others have done.

Viruses can be triggered buy many things and there is a link between HPV 16 and 18. Search for HPV.

Your father is fortunate to have you helping him through this!

Ed

People do make it without feeding tube. However I was 43 in great shape and I was determined not to get one. Well, the second round of chemo kicked my but. Although I hated every minute that tube was in my belly, it got me thru the rough 4 weeks. As you mite have read already, it still gets worse after the last rad. To be safe expect 3 weeks of difficult times after rad ends.

Although he might have a few extra lbs on him, this is no time to start a diet. If he is not getting the cals and water. Make an appointment. Just tell him to get it but don't use it. Its not that bad and it will only be in for a couple of weeks.

I sympathize with your dad. I was just as stubborn and I did make it thru my radiation treatments without a feeding tube.
But it was a tremendous struggle about this same time, half way thru treatment, when I could no longer eat solid food. I lived on Ensure Plus (vanilla). Yes it would have been easier for me to get a tube, and yes, I lost weight, but I did get thru it and it meant a lot to me psychologically.
I had to shake my head reading this, remembering how I did not care nor listen to what my wife , my sister, my doctors thought about getting a feeding tube. As if anyone could make me get one. so, yes try and get him a tube, but don't blame yourself if he refuses. 7 lbs in a week out of 280 does not sound like much to me. I was only sixty years old though and went from 177 to 134, but I had a lot of lean muscle mass and almost zero fat. So can it be done, yes if the patient is stubborn enough and can stand everybody saying his objection is stupid and dangerous, and forces down Ensure Plus.
I never got dehydrated nor needed to go into the hospital.
For me it was the right choice and I never regretted it.
For the majority of patients, without a psychological motivation (damn cancer will not force me to have a tube, I will swallow and eat), a tube is better
It can't hurt to talk to him but it is his decision
Charm

Welcome to OCF!

Sorry your father is going thru treatments. Its not easy but he can make it. Food begins to taste different than it should and eating becomes difficult. Here is a list of easy to eat foods. Soon it will be about texture too, so this should help. Its all about nutrition. Every single day he needs a minimum of 2500 calories and 48 oz of water. Getting more in is even better. Boost makes a very high calorie drink which can help to get all those calories in easily. It can easily be ordered using the Amazon link on the main forum pages.


Boost VHC

Easy to eat foods

Best wishes!

Thank you all for responding! Yeah, trust me, he has heard about all the benefits of having a feeding tube from both my mom and I and all his doctors. He's not doing it. He said he is like my daughter (who is 3), stubborn and hard headed. Haha. He is fully aware that if he doesn't keep slamming down those shakes and drinking enough water be could easily end up in the hospital. He is bound and determined to make it. He is not a complainer. He would have to be near death before he complains about being in pain. He'll just say it's "uncomfortable."
Anyways, nobody can force him to get a feeding tube. All I can do is support his decision and come to you all for ideas on things for him to eat/drink.

Also, what is considered a "round of chemo?" My dad goes for his chemo once a week (his doc said he is actually getting a pretty mild type). Doc also said when his radiation is done, his chemo is done, which is April 25th. Also, so far, all his blood work has been good.

That would mean a "cycle" too, and all depends on the type of chemo, and cancer they are treating, and is usually used in a specified time period to be effective, prevent resistance, and for some, started again in several weeks. In our case, it's usually 6-7 weeks, used concurrently with radiation, which is used as a radio sensitizer to make radiation work better. Some have "maintenance chemo" for a longer duration, as adjunct treatment, to prevent recurrence, prevent tumor growth progression, as palliative care. Some have neoadjunvtive treatment or Induction Chemo therapy, before current chemoradiation, radiation alone or surgery, in several cycles spaced apart. I don't know of any mild chemo, but they say targeted drugs, like Erbitux, Tarceva, are milder.

My Dad is getting Carboplatin and Taxol. I believe the Erbitux is what they gave him at first and he was allergic to it. They tried it twice--the 2nd time they doped him up with Benedryl and steroids beforehand and he still had a reaction. The doc said my Dad is the first person he has ever seen that is allergic to it! So, they switched over to the Taxol.

Hi Shannette,
My husband had BOT cancer as well. He got a feeding tube, but rarely used it. In fact, he used it for any disgusting meds more than anything. He drank the Ensure the entire time, ate scrambled eggs and pasta spirals with tons of butter so they slid down!! He lost 56 pounds during tx. He had it to lose though, but it was a lot of muscle, not only fat. I also made him milkshakes now and then. Your dad can do it without. He seems very determined as was my Kevin. Just be sure to push the water too, and iif he begins to get lethargic or weak or very crabby, he's probably dehydrated. He should be able to get fluids from his mo.
Keep in touch!!
Kathy

PS...the worst is yet to come. Just don't let your Mom get too upset by the end of tx and the next few weeks. It's normal and he will pull through it. Then will be the hard part of keeping the fluids going.
Kathy