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
Taking a slightly askance view, and ignoring the weight loss, what is truly wrong with existing on the appropriate amount of Ensure (or other meal replacement products) for an indefinite period? Perhaps supplemented by fiber.
I know it's not normal not to eat, but in many senses we (even the caregivers) are no longer normal -- I'd be consulting the dietician/nutritionist, because I'd be more concerned about the weight loss consequences than the lack of solid food consequences.
I can hardly believe I'm saying this, but as much as we may dislike Ensure because of it's links to our ordeals, it is quick and efficient, requires no preparation or special storage, and if one can't taste it (or doesn't mind the taste), where's the real harm? The math for daily caloric consumption is easier than typical kitchen caloric math <grin>.
Pete
Living on Ensure does not equal weight loss. I have lived on it for just less than three years, and lost almost NO weight. If he is losing weight, he isn't drinking enough of it. Switch him over to the PLUS flavors that have 350 calories per can instead of 250. And buy the generic at Wal Mart - its 40% cheaper and identical.
Take a can of good vegetable soup, blend it on high until it is completely liquified (add water), and mix it with Ensure Plus. There are no meal replacement liquids that can completely replace many of the essential nutrients from food. Ensure and Jevity (same company)come pretty close.
If he won't eat solids, buy a blender. If he won't drink enough to regain a healthy weight, confront his psychologist with that fact and ask that the issue be addressed ASAP. "Waiting" till things get back to normal is NOT ok. Things won't EVER be back to normal. Pour on the pressure to him. Don't worry about 'eating', worry about weight gain and health. He is hiding and shouldn't be allowed to. He is angry and scared. I hid for over a year waiting for the clouds of all this to lift. I'd be happy to talk to him. Many others here would to.
The hard part is over, but the work is not done. Tell him from me that Ensure will keep him alive, but will NOT restore him to health and vitality - no matter how much of it he drinks. Be strong. Be firm with him. Send him here. Tom
I agree with Tom. I lived on Ensure from Walmart for over a year on a PEG, that coupled with blender drinks and way too many canned peaches. My weight stayed on once I got on the PEG. It's a function of calories per day. But with a willing attitude, I expanded to poached eggs, mashed potatoes, baby food, pureed blender stuff my wife would make.... and as time went by it got better and better. But you have to want to do this, I'll be the first to admit this isn't an easy transition. And I still today have to rinse almost everything down with tons of water....the downside being that I am often full of water before I'm full of food. I have a local survivor who is now 8 years out and lives off of blender drinks only. This is by choice, he isn't willing to try, and is satisfied with the way he is.....
Thanks for all the ideas and support. His weight isn't continuing to drop, fortunately, but it's just way below what is healthy looking (in my amateur opinion). He mentioned last night that his reluctance to try food is rooted in his attachment to food as a sensory experience. He is a former chef with highly refined senses of smell and taste, so every time he tries food he once loved and it tastes terrible he feels like abandoning it until it's perfect again, which he's starting to agree is not great for his health. I will pass along your suggestsions. Last night, I reminded him again about what a great resource and community this forum is. I hope he will soon give it a try. He is truly a loner type who is inherently leery of organized groups, esp. support groups, but he says he's coming around.
I should mention that we're separated. After his treatment, I found out he'd started sneaking cigarettes and we had just had a baby midway through the treatment. That wasn't all that was wrong with us, but it was the straw that broke the camel's back. I couldn't fight for our marriage anymore. I love him like family, though, and want to support his recovery so he can be a father to our daughter. I wonder if there are other couples like us out there? I should probably post to the caregivers forum.
Thanks so much for your support--
Jennifer
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Former caregiver to husband who is in remission from Stage IV tonstillar cancer (dx June 04)
T2N2bM0
3 cycles induction chemo, followed by 7 weeks daily IMRT with concomitant chemo, then selective neck dissection
Jennifer, there are 2 things that I'd like to address in your last post. I can't tell from your posts how close and communicative you and your husband are, but if you do communicate, then please pass this on to him: Dear Jennifer's husband: Because of your culinary training and your experience with this disease, you have the oportunity to make a HUGH CONTRIBUTION to those of us who are also battling Head and Neck cancer.Caregivers [like me] are searching 24\7 for ways to augment our loved ones' nutrition, in a trial and error fashion with alot of tears involved. Cancer patients,like you,are struggling daily to find a way to get the nutrition they need and to satisfy the sensory pleasure associated with food. Altho I'm not a Chef, I owned and operated a Gourmet Cooking School years ago, and am a pretty good cook, and I challange you to help find new recipes and presentations to get people going eating again in their "new normal way". If you take this challange, I will bet you that you will start to feel better[and eat better] soon.
Jennifer, the caregiver's forun would be a great place for you to unwind. Being in this position is a tough job and there are many people here who can relate to your anguish. Just remember , you are NOT alone. Amy
Jennifer,
I am almost 8 weeks out of radiation, 33 imrt with 3 cisplatin treatments and am almost 4 weeks removed from a radical neck dissection and my next goal is to get this feeding tube out so I can really begin my recovery. I try some kind of food every day some works some does not, I do know that I try something, anything three times a day some works some does not and when it does not it is very dishearting and some times drives me to tears( if I was not a teacher I would have liked to be a chef)but your husband has got to try and push daily and never let up, failure is part of the ritual but so is success. The success may be small but they built up. Keep pushing your husband in a positive manner, my ex is a cancer survior 16 years ago and she is my best friend , my rock and biggest encourager. Keep pushin' my dear.
Lenny
Amy, I will share your "letter" with my husband. We are in close communication esp. because of our baby and see each other every day. You are doing a tremendous service by writing in this forum in the midst of what I can only imagine is an emotionally challenging time.
Lenny, you have a great attitude and it is very heartening to hear about your relationship with your ex. Thank you!
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Former caregiver to husband, 42, who is in remission from Stage IV tonstillar cancer (dx June 04)
T2N2bM0
3 cycles induction chemo, followed by 7 weeks daily IMRT with concomitant chemo, then selective neck dissection
Hi Jennifer --
The important thing to convey to your husband is that FOOD IS MEDICINE. This is posted on the OCF web site and also, was hammered at my husband by his hospital nutritionist, both his oncologists and his ENT (who herself had HNC 15 years ago and is a survivor). He needs to take his "medicine" in order to recover. It would be great if he would try to move beyond the packaged formulas and try things with more protein and fiber, like certain mild fruit juices and fruit and vegetable purees, or very soft scrambled eggs (perhaps with added milk and cheese). For example, I made Maryland cream of crab soup for my husband and put it through the blender to make a lovely puree that would be acceptable served at any restaurant. So he doesn't like soup -- well, it's medicine, you don't have to LIKE it, just TAKE it!
And try to make him understand that things can get better but he has to experiment and push the envelope. Does he have any sense of taste at all? If so, what can he taste? Can you build on that to urge him to branch out?
I should add that not everyone ends up unable to taste or enjoy foods. Taste can return, slowly for some, more rapidly for others, ditto the ability to swallow more normally. Your husband should have an evaluation by a speech/swallowing therapist and get exercises prescribed to improve his swallowing ability. Quite frankly, this should be a part of every HNC patient's routine treatment and should be asked,nay, demanded, if not offered. (Both our two moderate-sized local hospitals have the capabilities to do these tests, so it is not limited to large CCCs.)
It can be a long road back but you have to take that first step and not just stand at the curb...
Gail
Jennifer,
I also enjoy cooking (and eating!) and found radiation and the months following to be a horrific challenge at mealtime. I didn't have a PEG and was determined to try to keep my weight up as much as possible. As frustrating as it was, I would regularly scour every section of the grocery store looking for things that were soft enough and moist enough so that I might have a chance of getting them down my throat (after numbing my mouth with the swish-and-spit stuff). I know it's not a sensory delight to have to go through that kind of process at mealtime, but it was a truly pleasant surprise when I gradually began to find that my taste buds were coming back, and eventually my salivary function improved as well. It was a welcome relief when I could finally go out to a great restaurant and order whatever I felt like without worrying about whether my mouth could handle it and how it might taste.
I hope your husband can recognize that eating soft foods will at least help his swallowing function recover and possibly enhance whatever nutrition he is getting now. Hopefully he'll start to see improvement and get back to the point where he can really enjoy eating again.
Cathy