Metasize Squamous Cell in the lymph node in neck - radation 15 days not able to eat anything

protein drinks are easy to swallow
Hi ConnieHolly,

Welcome to you and your husband for finding this forum. We strive to be helpful to Head & Neck patients. I had stage IVa, SCC, BOT, HPV+, surgery on tongue and neck followed by radiation and chemo. Similar to your husband.

Since he does not have a PEG and I imagine his throat and mouth feel like crap. The only suggestions I can make are high calorie protein drinks and soft foods. Some recommend baby food and others mashed potatoes. I myself, hated the feel and taste of food so much, I don’t know how people manage to eat, but I guess your husband is doing it. I had a PEG, so it wasn’t an issue. Even with the PEG I managed to drink one meal a day. I lived on smoothies for 7 months after treatments ended. Oh, I lost 43 pounds, seems to be a common thread between all of us.

The soft food people and real brains to this site will be along soon. Best of luck to you and your husband.

Best,

Matt

he needs a PEG
The situation will not improve when he starts radiation, it will likely get worse. He needs nutrition and fluids. I would insist on a PEG, and if his doc doesn't want to do it, find someone who will.

Eating isn't for pleasure anymore...
it's for survival...a 70 lb weight loss in a 4 week period is more than I can even fathom...so am surprised that the Dr. "doesn't want to do a feeding tube".....why the hell not? I honestly think you need to think about insisting on it...demand that he get a tube. If food tastes terrible now, at least when he starts radiation, it will simply become tasteless...but there's the chance he'll move into having his mouth sting and hurt trying to eat.

I had two big fears when I started treatment...1) that I could starve to death in the midst of fighting my battle (I weighed 97 lbs when I started treatment, and weighed 81 when I finished)...and 2) that I'd lose my swallowing ability.....those two fears kept me eating, or at least drinking water all thru treatment.

You're going to have to let him know that this is serious biz....a "come to Jesus" talk...possible dying is the real deal in this fight.

p

PS...Ya know, 8 to 10 gulps of Ensure or Boost will finish a meal in a couple of minutes...that isn't too much "bad taste" to put up with in order to stay alive.

phrannie51 said:

Eating isn't for pleasure anymore...
it's for survival...a 70 lb weight loss in a 4 week period is more than I can even fathom...so am surprised that the Dr. "doesn't want to do a feeding tube".....why the hell not? I honestly think you need to think about insisting on it...demand that he get a tube. If food tastes terrible now, at least when he starts radiation, it will simply become tasteless...but there's the chance he'll move into having his mouth sting and hurt trying to eat.

I had two big fears when I started treatment...1) that I could starve to death in the midst of fighting my battle (I weighed 97 lbs when I started treatment, and weighed 81 when I finished)...and 2) that I'd lose my swallowing ability.....those two fears kept me eating, or at least drinking water all thru treatment.

You're going to have to let him know that this is serious biz....a "come to Jesus" talk...possible dying is the real deal in this fight.

p

PS...Ya know, 8 to 10 gulps of Ensure or Boost will finish a meal in a couple of minutes...that isn't too much "bad taste" to put up with in order to stay alive.

lets see
97 minus 70 equals 27. That could have been a challenge:)

Sorry about the news
I have to agree with John he needs his nutrition to survive. If my doc didn't want to give me a peg tube he better have a damn good medical reason, otherwise why even fight it? I am sorry if this is cruel but action needs to happen, my prayers to you and your family.
Randy

70 Pounds?!?
Can't believe the doc is nixing the feeding tube idea.

For many of us, many foods become totally unpalatable, or too difficult to eat.

What I had to do was get it into my head that calories were just another prescription that I had to take. I did lots of smoothies with protein powder, banana, peanut butter and yogurt added - I could take pain meds and try to chug it down quickly, and get in lots of calories in one glass (with no added sugar). If I'd been smart, I'd have figured out a way to get some good-for-you fat in there, too.

If he's not eating, and not getting in calories, the pain is going to be worse than if he's well fed and well hydrated, and his strength and stamina will be decreased. At this point, everything could become more difficult to deal with. It also helped me to log my water and calorie intake every day. It kept me honest, and made it easier for me to make sure I got enough in.

ToBeGolden said:

No Good Suggestions
I have nothing to suggest in addition to what others have posted. But I must say that cancer is as hard on the caregiver(s)as it is on the patient. I know we all feel for you. Only wish we could help more. Rick.

Connie
Welcome to this site, sorry you had to look us up but glad you found us.
I can only stress what all of the others have said. First and foremost I would demand a PEG for your husband. I can relate to the dr saying no however. My radiology oncologist said "not yet" every time I'd ask. I am much like Phrannie, I started out at 100lbs and I was losing weight rapidly.
The RNs at the office agreed with me and called my chemo oncologist office and he was quick to order it for me. That might be an option for you.or if your insurance permits, go straight to a GI yourself and express the need. Honestly that is crucial at this pointing his journey.
I can guarantee he already felt crappy and then to lose so much weight, that just adds to feeling miserable.
Next he needs to realize that at this point we eat for other purposes, eat to live and not the other way around. food will either taste horrible or like nothing at all or a little of both. Once he gets his PEG he still needs to swallow to exercise those muscles. It is true what the others have said, you can lose the ability to swallow if you allow those muscles to harden from radiation. You need to use them or lose them. and lastly, if he's not eating he's not being properly hydrated either. That in itself is very dangerous. I myself spent a mini vacation in the hospital due to that. This is all serious and needs to be taken care of. I bet as soon as he gets some nutrition he will begin to feel better too. He most likely won't feel good/great until treatment is over but nutrition and hydration will make a noticable difference.
I'm sorry you are both going thru all of this. There is light at the end of the tunnel as many of us can vouch to. I wish you luck getting the treatment he needs. We are always here, come back often,
Take good care,
Billie

Tim6003 said:

Hmmmm...this makes no sense...(the doctor I mean)
Unless a medical condition ...why would the doc not order a feeding tube...I lost 70lbs during my entire treatment!! I was a very big guy to start...so I did okay......

I know each person is different and I get why those who did not need a tube might disagree with me ...but for the purpose of "insurance" why don't all doc team of H&N strongly suggest a feeding tube just to prevent the situations I've read on this board...if you never need it great, but if you find you absolutely must have one ...it's not when you are at your worst and weakest...???!!!

Tell your husband sorry he has to go through this (as well as you too) but if he will not eat for himself, he should eat for his loved ones who have to watch him go through what he is going through ...time to help others feel better at this time .....I had my wife and five children to worry about ...watching them stress and fear for me was hard and made me do what I had to do to fight and get better!!

I hope that does not sound like I am not sympathetic to him or you ...or preaching at you both ....I know this is tough stuff and I whispered a prayer things will get better.

Best,

Tim

DOESN'T MAKE SENSE
I went to Md Anderson and i was 150lbs they told me up front that if i lost 10% of my body weight i would get a feeding tube well 4 weeks in i was getting the feeding tube i'm not going to sit here and tell you he will like it because he wont its weird and uncomfortable but it works he should have already had one the problem is once you start losing weight it goes fast very fast so its hard to catch up other than that do the protien shakes if you can and demand a feeding tube doesn't make sense also keep a bottle of water everywhere you go must keep swallowing even if its a little bit and it hurts.

Try drinking shakes!
I'm so sorry you are both going through this, I to was to the point of having to re-install my peg because of the weight loss and my Doc gave me a case of ensure and said if this don't work then we have to put the peg back in (my peg/feeding tube became infected and was removed after two painful weeks). I took the ensure home and prayed to God that I would be able to drink them. He answered, the ensure tasted good from day one until 6 months later when I had my last one. I always thought hey were chocolate but found out months later that they were vanilla, the lord works in mysterious ways.
Please also try shakes and smoothes made with fruit or ice cream mixed in with ensure. The coolness will feel better then the taste since there probably is none.
A guy near Jefferson City survived on egg nog, you just need one food that tastes good or taste
ok keep some weight on.

Lot's of love, luck and prayer.

Dale