My husband was diagnosed in June 04 with Stage IV right tonsil (T2N2bM0) SCC. He has not been able to have solid food since he began chemo/radiation. He claims that his lack of saliva and the weird textures make it impossible for him to have anything except Ensure and the like. It's hard for me to watch him drinking nothing but those for a year and a half. He won't eat soup (says he doesn't like any kinds), though he'll occasionally drink juice. It's all just more sugar, in my opinion, and not good for his health. Has anyone else taken this long to be able to eat ANY solid food?

Jennifer,

Hopefully you'll get responses from some people whose diagnosis was closer to your husband's than mine, but I can identify somewhat with the problems associated with dry mouth and "weird textures". For a LONG time after I finished treatment, eating was a really time-consuming chore but I just kept focusing on the fact that it was a necessary part of survival. There was a lot of trial and error -- experimenting with soft foods that tasted terrible while my taste buds were rebounding from radiation. Eventually, however, all of the taste sensations came back, my salivary function slowly started to come back with the help of medication, and I got back to the point where I could really enjoy eating again. Please try to keep your husband from giving up on the eating attempts -- it won't be easy for awhile, but hopefully he'll continue to heal.

Cathy

Thanks, Cathy. Nothing I or anybody else says seems to convince him to continue trying to eat food. He's patiently awaiting the day when his salivary function is back to normal, biding his time with Ensure. It's the strangest logic.

Jennifer, I have no idea what treatment your husband received to beat his tonsil cancer. Mine was quite similar to his and underwent intensive chemo-radiation. Although time for recovery varies from individuals, I consider it rather 'unusual' if your husband is still on Ensure after over a year. Has he tried semi-solid food, like congee or cereal? I was able to take fish congee very soon after finishing treatment and had it three times a day for a couple of months. Soup could be more difficult because it might cause choking. Has your husband consulted any medical advice about nutrition? Whether he can take the food is more important than whether he likes it or not at this stage. Sometimes, we have no choice and strenghthening our body is the top priority. Do ask your husband to read some of the posts on this forum about eating issues.

Karen

Karen,
Thank you. My gut has told me for quite awhile that something is not normal with his eating problem. I believe it's more psychological than anything. He underwent induction chemo, then 35 days of concurrent chemo and IMRT, followed by a selective neck dissection. All in all, the treatment stretched out over 7 months. I was his constant caretaker and the person to ask questions of his doctors and do all the research. To my knowledge, he has spent very little if any time in forums or on the web reading survivor stories since his initial Dx. I'm sorry to be venting, but it's been so frustrating to witness his inability to reach out to people during this brutal treatment, particularly to other survivors, and his inability to push himself to eat even if it tastes horrible--just to get real nutrition. I love him, but I don't believe his approach to recovery is healthy.

Jennifer

Get him to a shrink. Then to a swallowing therapist.

I had the same treatment and I was eating pizza 4 months later (I did not have the neck disection however).

Salivary function return after IMRT can take 18 months. I just always carried a water bottle everywhere and ate moist foods. Like Cathy said though it was a phase in process and took some experimentation.

We often have more caregivers than patients here - sometimes it's just too real for the patients.

Thanks, Gary. He's already seeing a psychologist on a weekly basis. I can't believe that his surgeon hasn't expressed concern at his tremendous weight loss or encouraged him during his bi-monthly checkups. The bottom line for all of us caregivers is that we can only ask questions and make suggestions. Beyond that, it's out of our hands and that's a tough thing to accept when you have a baby who needs her father to stay alive. I really appreciate the care and responsiveness of the folks in this forum. It is the only place I've been where people truly understand what we've been through and are still going through. Talking to my friends and family doesn't cut it. I guess I need to start hanging out in the caregivers forum.

Jennifer

Jennifer, I was totally afraid to eat solid food after my ordeal,(surgery and radiation.) It was my speech therapist that convinced me to try some baby food, this was in November(had surgery in May 2002,) I believe. I built up from there, each week she would add something else for me to try, nothing tasted all that good and a few times I choked which set me back a little but gradually I began to eat food again. Don't think this is much help to you, but I wanted to share. Take Care, Carol

Hi Jennifer --

Actually, I know of a similar pyschological case -- my best friend, when we were about 14, almost died from choking on a piece of meat. She lost consciousness and awoke in hospital. As a result, for over two years she refused to eat any solid foods. I remember going to the drugstore and she would only get a "frappe" (milkshake in Maine-speak) while the rest of us teens got burgers, fries -- the whole "healthy" teen-chow.

She was seeing a pyschologist, too -- but it took ages for her to gather enough courage to try even soft foods. Even now, 45 years later, she eats v-e-r-y slowly and carefully and takes abnormally small bites.

Your husband should be seeing a nutritionist and getting advice from that end as well -- ask your oncologist to make a referral. Maybe also speak to his psychologist. It is hard to know what the best approach may be -- some people who go through cancer treatment become dependent on their caregivers and essentially are compliant with requests; others are resentful and defiant about their status and refuse advice, even that which is obviously in their best interests. Your husband's pyschologst may have insights on this.

Some people have had success with regaining taste (an important part of wanting to eat) by taking Zinc supplements, others from acupuncture. Sounds as if you will to be the proactive one and research these options.

Best luck,
Gail

Is he taking any drugs like Salagen to help improve his saliva production? If not, I would ask about it. If he is on something, maybe they need to increase the dosage.

I didn't know Zinc helped improve taste, but I did start taking it a month after my treatmments to improve general healing. Has he been checked for thrush? What is the condition of his tongue? Does he brush it? If he has a lot of 'gunk' on his tongue, it makes it difficult to taste things. A tongue scrapper can also be used at this point.

While he may still need some Ensure to compliment what he can eat, he should be able to eating by now. Follow through on everyone else's suggestions.

Take care,
Eileen