My husband is 2 months post treatment and generally he is doing okay. He got through treatment without a feeding tube and was able to keep his weight loss to a minimum. The issue now is that he has no appetite and he is constantly exhausted ( probably because he's not eating enough). He just had a physical about 3 weeks ago and they said his thyroid levels were normal. He has lost a lot of weight since ending radiation and he really doesn't have it to spare (6'5" down to 175 from 200). Any thoughts on how to kick start his appetite? Swallowing is not an issue except for really dry foods.

Overall, everthing sounds pretty good, but It's still early for some of the side effects to go away, some take several years or longer, but getting adequate nutrition, hydration, is important for recovery and healing. The cancer center is probably doing the blood labs (creatinine, hemoglobin etc), which may show some deficiencies, which can effect energy levels, some even appetite, so correcting them or over time may help. Sometimes vitamin D, B12, testosterone are not part of these basic blood tests, so check/ask, as these can also effect energy levels. As far as thyroid, the risk of hypothyroidism increases over time the longer out from radiation. I'm 5 years out from my initial treatment, a few years from others, and just developed hypothyroidism, but can occur earlier. They recommend to be tested at least twice a year.

I lost over 110lbs just from chemo in 2009 (cachexia), but gained some back, lost again, between 50-70lbs, after several years. Some of the things that helped increase my appetite was watching the TV food shows, reading about food, caffeine, Marinol, corticosteroids, fat, sugar, wine (after a few years). There are others too, but either I didn't do it or can't recall. Amino acids, omega 3 fatty acids, melatonin, whey protein, using peg tube to supplement diet, may also help with weight gain, reversing metabolism, but check before doing.

There is more to food than just eating, and have incorporated seeing, smelling, hearing, memory, textures, besides tasting, into my dining enjoyment, in addition to the different taste senses. I'm just getting around to finally tasting the sweet in fruits, ice-cream, etc, and salt is either too salty or not enough. If food doesn't look good u won't eat it or much of it. Same goes for presentation, etc. All sounds well, and good, but this was mostly several months after Tx. I survived on glucerna for a long time during, after Tx.

Maintaining proper oral care is also important for oral/dental health, and helps reduce infection, such as thrush, which can effect taste, and cause fatigue. Pain control is beneficial too, which can effect eating, desire to eat.

Light exercise like walking may help increase the appetite. Maybe see your centers registered dietician for help with diet, minimum daily requirement.

Good luck, and hope this helps.

Recovery from OC treatments can take a long time. Your husbands body has been thru the war and needs to rebuild itself. That takes lots of fuel. Every single day he needs to push himself to take in at least 2500 calories and 48-64 oz of water. This needs to continue until he hits his 1 year ark or better yet, the 2 year mark. If he is able to take more in like 3500 calories it will greatly help him to feel better and recovery quicker. Adding high protein whey powder to liquids will also boost his healing. His recovery is dependent on his intake. I know its not easy forcing yourself to eat when you arent hungry. I struggle with this on a daily basis and Im 7 years post rads. How about adding a few cans of Boost or Ensure every day? That would help to balance his diet and hopefully get him back on track quickly.

Best wishes!

Christine (And Paul), that is great advice, not only for Don but for all. Also, continue to experiment and stretch yourself on options. When you find things that work, keep them in your arsenal and use them to your advantage, A Lot!!! Best of luck and Prayers Maura and Don!

Thank you Steve F. There are NCCN Guidelines for Cancer Related Fatigue that OCF has posted here, and includes many items not mentioned, if anyone cares to stroll through 45 pages, I haven't done it in a while lol.

One thing I didn't mentioned is that I conserve energy when I can. I try to take a nap daily in the afternoon. I use a shower chair to sit on to shower, using a long shower hose. When cooking or doing kitchen chores I sit down. When traveling outside the home I use a cane, get dropped off door to door. I only do one task at a time, no double appointments. If I would need to stand a lengthy period without sitting down, which never really happens, I would take the walker. I have everything mostly delivered, food, prescriptions, laundry, and have a cleaning person. When I shop, not often, it's usually at Costco, and use a scooter.

http://oralcancerfoundation.org/treatment/pdf/fatigue.pdf

Nutrition, hydration rest, and recovery takes a long time. You will see that repeated a million times on OCF, because its true of course. I knew that, but knowing that doesn't prepare you for the painfully slow progress. It seems like you're not getting anywhere. Certainly not day to day or even week to week. Month to month you might notice a difference. 8 months post treatment I am still not 100%, still on a variety of medication and still not back to full time at work. I figure I am maybe 80-90% of what I expect to be the "new normal" people speak of.

I would recommend going through the medical stuff for checking the testosterone, thyroid etc, as well as the nutrition, hydration, sleep patterns and toileting. Once you tick those boxes what you are left with is they way it is. Not much else can be done about it, but it can cause a lot of angst thinking you haven't done something or that this is somehow abnormal. Tick those boxes, and he's as normal as he's going to be for a fair while.

Being calm about the lack of progress was a big challenge for me and it still is. Seeing a psychologist is a good idea if he has any anxiety/depression to deal with, as many of us have.

Thank you all for your help. I especially like PaulB's idea about the cooking shows and smells. I have to admit I've gotten kind of lazy with cooking because he won't eat it anyway. I'll fix him a can of soup and I'll grab something. There's nothing more appetizing than walking into a house that smells like warm delicious food. Saut�ing garlic and onions! I'm on it! Thanks again.

You may consider making every mouthful count. In other word, give him food that is easy to eat but laden with calories.

Maura and all,
Thank you for addressing the topic I am concerned about. Jim is 1 week post treatment and the fatigue is really hitting him. I also think his expectations are too high and he is trying to do too much.
He is trying to take in all the calories he can, but everything tastes so salty (even water). Has anyone dealt with this? Any suggestions? He conts to lose weight and has none to spare.
Thank you for the information and suggestions. There is nothing like hearing from those who have been through this horrendous experience.

Debbie

Debbie, I would say Jim is doing well at only one week post treatment. I know it can be personally frustrating, not the kind of person he was before, but this recovery is more like a marathon, not a sprint, so it takes time. It took me quite a while to get over these facts, but looking back, I did quite well with what I went through, and sometimes that is encouraging, and hope Jim finds the same. Although I didn't join any social media or support groups until several years after my initial cancer, I find they are good to hear what others, unfortunately, have gone through, and that you are not alone.

SPOHNC, Support for People With Oral and Head and Neck Cancer, have monthly support group meeting in local chapters throughout the country, which I find helpful.

https://www.spohnc.org/local_chapters.php

As far as the salt taste, it could be from number of things. Including altered taste, smells, from radiation, chemo, being dehydrated, even thrush alters taste. Mucus, sinus fluid, tears, contain salt, being dehydrated concentrates the taste of salt in the saliva. Usually, several weeks after radiation treatment you have excess mucus, some call rope mucus, so that could be a source. To help with odd tastes, a stronger tasting drink, lozenges, such as citric, grape, root beer, before eating may help be a scapegoat. Maintaining proper oral care is also important, and helps with taste, reducing risk of infection. Rinsing, brushing, drinking liquid before eating may help.