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

That's one of the rarer side effects with Erbitux, usually seen in the initial or 2nd infusion, severe allergic reaction, and cardiac arrest. It's good someone took notice, and made the switch. I had a different reaction on the 7th day, after my 5th day of infusions, but already went home, but had to be admitted to a local hospital. Carboplatin, is related to Cisplatin, but with less adverse effects, in some aspects.

If your father is not able to drink enough water, at the hospital they can give him fluids. It will need a doctors prescription. Becoming dehydrated will make him feel awful, Im sure even your father would say something if that happened. Its not a big deal to get a couple bags of fluids in the chemo lab. It will make him feel much better. So keep that in the back of your mind for the upcoming weeks in case his drinking capabilities diminish.



PS... Shannette....Scroll to the top and look next to the "My Stuff" tab. You should see a blinking envelope, click on that to read the message I sent you. Its about navigating the forum easier and making a signature.

Hi Shannette,

I'm just starting treatment so I'm a newbie in comparison to most on the boards. I spoke with my team about a PEG but they all feel that I'll be fine.

My RO put me on Gabapentin (Neurontin) a few weeks before I started treatment and so far so good with my throat. It helps to reduce or eliminate pain associated with sores in the mouth and throat. I'm 7 rads (of 30) and 1 chemo (of 6) into treatment and I have no throat issues (yet). Upon examination last Friday, I had redness in my throat but I couldn't feel anything. I'm also rinsing with the baking soda/salt/glutamine 4-8 times a day.

It's my goal to do this without a PEG but we'll see. So far, I've maintained my weight over the last few weeks. I'm eating pretty well despite swallowing issues from surgery. Protein shakes have been a huge plus in that (Whey protein, whole milk, fruit, glutamine). I have at least 2 a day in addition to any solids I can get down.

I was a smoker and my cancer is HPV related too (a double whammy!) but should respond well to treatment. Shingles is a form or herpes (herpes zoster) caused by the chicken pox and yes, both HPV and HSV can lie dormant and one would never know they had it. A weakened immune system can trigger an outbreak and treatment can do that so keep an eye for that.

Positive thoughts and prayers for your Dad!

"T"

More power to your dad, hopefully he'll get through it without needing the tube... Hugs!

Thanks so much, all! His doc looked at his mouth last week and said the inside was red, but didn't really see any sores. I think my Dad's biggest issue is taste and just not really feeling like eating, rather than the physical problems with his mouth/throat due to mouth sores and what not.

Hi Shannette

Lack of taste and loss of appetite can be just as debilitating as physical pain.

Alex's doctor and I made the nearly fatal mistake of thinking that with the right attitude, Alex could "just do it". Well he couldn't and he ended up in hospital. Please understand that whilst some of it can be overcome with attitude and perserverance, sometimes it can not and this is the time that your Dad needs support rather than nagging.

Alex's taste disturbance and complete lack of hunger was so bad that he would throw up if he forced himself to consume more than 3-4 mouthfuls of soft food or 50 mLs of formula. The mucousitis (ulcers and rawness) is caused by both chemo and radiation and in the case of chemo, goes right the way through the digestive tract. This means there may be issues lower down that the doctor can't see that is still impacting on his ability to eat.

By all means encourage him to eat, and nag him just a little bit, but be aware it might be much much harder than just mind over matter and he needs as much support when he can't do it as when he can.

Update: My Dad has decided to get a feeding tube. He can barely get water down, which by reading your posts I had told him this might happen. He is just one of those who doesn't want to just "take your word. ". He had to try without a tube, just to see if he can make it.

Anyways, he knows now he needs a tube to get adequate nutrition and hydration. Did any of you have one put in this far into treatments? He is a little over halfway through. Treatment is scheduled to be done April 25, unless this feeding tube procedure makes that date later.

There have been many members who have gotten feeding tubes half way thru or even at the very end of their treatments. Its a good tool to help keep him hydrated and with enough calories. He still needs to continue to take sips of water several times per day even if it hurts. Believe it or not, a person can easily lose their ability to swallow after just a couple days of not doing it. This can be a huge problem down the road so please tell him he MUST swallow water every single day.

Best wishes with the surgery. He may be sore for a couple days after getting the tube. Ask if he can have a visiting nurse to help him learn to use the tube and ask for a pump so he can do feedings while watching tv or even while sleeping.

Good luck!!!

So......since my recent post about my Dad wanting a feeding tube, he blended 2 scoops of ice cream and a can of peaches and drank it. Ha. He said if he knew for a fact his throat wouldn't get any worse, he wouldn't get a tube, but since he doesn't know, he wants to have one just in case. He certainly knows the importance of continuing to use his throat and swallowing muscles. He says he will not become dependant on the tube. Just use it to up his calories and when absolutely necessary.