Husband not eating...very worried

Try to get a consult with a

Try to get a consult with a nutritionist at the hospital, I am sure that person will be concerned and will be able to provide some help, maybe even suggest a feeding tube.  It is not a magic solution but it might help him.  

The good thing is that he is getting some hydration on a daily basis but it must be quite a burden on both of you, they are so tired all the time because of the treatments, the side effects and stress.

hope his pain level and discomfort ease soon.  My husband was in a similar situation and after a week of daily visit, the nurse suggested a visit at the emergency and that is exactly what I did.  He spent a week at the hospital, was fed 24h a day and god knows how many injections of whatever he was lacking by then.

best of luck

 

I can't imagine a medical

I can't imagine a medical doctor not being concerned about a total lack of caloric intake. Calories are absolutely essential. 

My diagnosis sounds identical to your husbands, I was; SCC, BOT, HPV+, Stage 3, with neck node involvement. I also did not use a PEG tube.

That said, my doctors made we weigh before every treatment (I'd get sneaky and have heavy stuff in my pockets to try and fool them and lessen their scolding!). They also assigned a nutritionist to me who met with me on scheduled appointments and would find me while I was getting chemo. If I tried to go a day without eating (because of pain and nausea), I could tell the difference in my body - I would feel much sicker and even less like eating.

My medical team told me repeatedly that eating was not an option, it was a necessity or they were simply wasting their time as nutrition is key to recovery. They even said they'd insist on a PEG if I dropped more than 40 pounds.

Food lost it's appeal pretty early on in treatment for me - everything tasted like metal and the mucous I produced was so foul that it made me gag. I also refused all pain meds and only took 10ml of Hydrocodone on occasion to combat a cough that could get so bad I'd dry heave.

That being said, the nausea and extreme pain of swallowing made me suffer from extreme anxiety at just the thought of taking in calories.

I started taking THC (marijuana) edibles and patches for the nausea and anxiety. I also practiced meditation breathing techniques I saw on YouTube. It worked almost immediately. With those two symptoms gone or greatly reduced I felt I could power through the pain of swallowing. I also ditched the idea of homemade nutritious and good tasting concoctions from the Vitamix - simply took too many ounces to get me the calories I needed. I instead relied upon Boost VHC (530 calories in only 8 ounces - or 8 swallows, 4x a day). 

My wife couldn't even be inside the house when I drank my calories; I'd cry, stomp my feet, scream and even cough up bloody bits of sloughed off throat tissue. It was terrible. But, I knew my cancer was not only treatable, but curable - but only if I cooperated in my treatment and gave it 100%. Even when the rads and chemo is over, you're still being treated for up to 3 months. I actually felt my worse at the end of treatment. But my docs said the key to getting back to normal was nutrition, because their work was done at that point. And, they were right. Those agonizing days paid off. It's now four months post treatment and I can honestly say i am back to my old self (minus less saliva, tiny bit of tingling in my legs and a slight reminder of my throat radiation every time I swallow). I eat whatever I want and can taste it, my energy is back with no more naps or fatigue, ringing in my ears is gone, and my weight is exactly where the doctor says is ideal for my age and height.

There is a light at the end of the tunnel, but you decide how you get there, when you get there and in what condition. 

Your husband will be surprised when he looks back at this in 6 months and has a hard time remembering how bad it truly was.

Good luck.

Hi, your poor husband.

Hi, your poor husband. Chemorad is miserable. Have they scoped him to make sure that he can, in fact, swallow. And isn't aspirating. My entire throat so swollen they thought they might have to trach me. I couldn't swallow at all without aspirating. So had steroids and NG tube for 3 weeks (they froze my nose and throat so no pain) and my weight stabilized at 110 lb. I took it out myself once I could swallow again. It's all good now. No shame in having an NG- he can still practice swallowing. Dietician can help too but only if he is actually able to swallow enough.

God Bless You Guys

He needs to eat and drink.  I lived on cheese grits for breakfast, chicken rice soup with a peanut butter sandwich soaked in the soup, ensure plus snack and chicken rice soup with the pb sandwich for dinner fo 4 weeks.  Also try "Throat Coat Tea" with honey.  Available in the Coffee and Tea section of any grocery - even WalMart.  I drank 2 quarts a day, but it eased the throat pain.  Hope this helps.

 

Frances_S said:

Husband 7 1/2 weeks Post Treatment

Hello,

My husband finished treatment on December 11^th. He was not able to eat or drink until two weeks ago because of the pain and I believe the pain meds. He was on so much pain medication, he was nauseas all the time. He lost so much weight and I was so, so worried. There were days he would not eat a thing and there were the days he was barely able to drink two shakes. He went for hydration every two days. I had to take him to a swallowing therapist because he was afraid to swallow. I believe this had to do with the pain he felt and fear of the food getting stuck. The swallowing therapist was a blessing, she really helped him move forward. Once he was off all the pain Meds his appetite increased and things really changed.

Your husband probably needs to be on the pain meds a little longer because his treatment just ended. Talk to his doctor about when he can be weaned off. Also, add Benecalorie (app. 320 additional calories) to the high calorie protein shakes. If he can drink two or three of those shakes a day, he will maintain his weight.

Looking back now I should have focus more on the shakes then putting food in the blender and trying to serve him real meals. My goal was to keep him swallowing real food, thinking he might lose the ability to swallow, but the reality of it all was he just could not eat real food. If it wasn’t for the members of CSN, I would have never turned my focus to pushing the high calorie protein shakes and Benecalorie.

He is 7 ½ weeks post treatment and I already see a big improvement. Hang in there, in time he will get better.

Swallow therapy was a miracle

Swallow therapy was a miracle. I've mentioned it a few times, but I really credit a swallow therapy session I had to get me eating again. Like your husband, I was very afraid to eat. I was convinced the food would stop in my throat and I'd choke or aspirate. The therapist had me stand in front of a x-ray machine that did a video of me swallowing. She had me swallow all kinds of things - starting with thick liquids and ending with a dry granola bar. We then watched the video and she showed me exactly where I was feeling discomfort but also showed me how there was plenty of room for food and that my throat was working like it should. She also had me intentionally get a large pill stuck and then showed me how to clear it. She followed that advice with the recommendation that i take a sip of water while food is on my mouth to soften it and aid in swallowing. She suggested I have milk with my meals as it is thicker than water and also adds some calories to each meal.

Literally that night I went out and ate Mexican food I felt so confident to eat. Been eating whatever I want ever since.

Right after

Is the worst - I think worse than actual treatment. Three weeks of pure hell.

To be able to eat, I took pain meds, and used the lidocaine mouthwash before meals, it was the only way - and even then it was a struggle.

I found that the dietician had absolutely no clue when it came to throat cancer. They understand the "has to be soft to go down" but they didnt get the " I have a million papercuts in my throat and you want me to have citrus smoothies???"

Yes its cancer - but its somehow harder than some cancers - if thats possible?

 

I liked ice chips, calming, soothing.. but lidocaine mouthwash, OH YEA! Magic mouthwash? eww, sorry Matt, I just couldnt do that one, of all things I could taste, it had to be that!