Eating

Robby67

I do not want to eat. I watch food shows but doesn’t help. Has anyone else faced this. I am again losing weight

SuzJ

Yes, I just couldn't face it.

I did Boost once or twice a day, and a lot of water, and yes, I lost weight.

Remington25

I didn't want to eat due to pain from radiation, then when the pain subsided a bit, I wanted to eat but had no taste. I would eat/drink and get no satisfaction so I began losing more weight because I would only consume the absolute minimum in Boost drinks but when my taste started coming back I ate like a machine and went above my pretreatment weight. I think it is different for everyone and even though you feel off, it's a version of normal! Hope you continue your path to your new normal!

thedavid123

While in treatment (8 weeks of chemo, 33 radiation treatments), and just after, I went from 175 lbs to 131. At the time I thought I had lost my appetite, but in fact I had lost the ability to swallow. Once I had a feeding tube inserted I began to regain some of the weight. After 6 months with the tube and doing a ton of swallowing exercises, I began to be able to eat solid foods again and never looked back. Some of the members in my SPOHNC* group also reported that their eating improved as their swallowing got better. How would you rate your swallowing ability at this time?

*Support for People with Oral, Head and Neck Cancer.

Merquetio

Hey Robby and SuzJ,

I'm in Week 4 of RT (total of 7 weeks, 1/day) and 2nd chemo coming up. Diagnosed with squamous cell carcinoma in left lymph node below the jawline. So far, the node has shrunk to <20% of what it was before treatment. Was the size of a small chicken egg (yeah that's HUGE). So I'm very upbeat about it, especially since my RT Dr. said he expected this. That's how I'm encouraged, when I hear that my therapy is going according to plan.

Anywho, about taste and losing weight. My nurse navigator, Becky, continually stresses to me to EAT, EAT, EAT. If you're drinking only 1-2 Boosts a day in addition to three meals, consider eating smaller meals more often, and drinking 2, 3 or even 4 Boosts/day (I'm drinking Ensure Plus, 3 to 4 times a day). I had a cholectectomy back in 2017 (gallbladder removal), and my dietician recommended I switch to smaller meals, eating more often. So I was already doing what Becky recommended.

To me, there are a couple of benefits to smaller meals, more often. First, you're eating less at a time, and therefore kinda tricking your "taster" into the fact that it doesn't have to endure the lack of taste sensation. To me, that's the biggest effect. You're not forcing yourself to eat a big meal all the while, not enjoying it more and more as you eat more and more at one sitting. I think your mind builds up a resistance to eating something that has no taste (or doesn't taste as it should) the more you eat and experience that disassociation between eating and expecting the feedback of that fettuccini Alfredo that doesn't....quite....taste....how it should. Follow me so far?

So smaller meals, more often, leads to less resistance to eating food, in general. Well, at least that's how I'M interpreting it, FOR ME. Second, eating smaller meals puts less stress on your digestive tract and leaves the rest of your body to have more energy going to it, i.e. your immune system has more fuel to fight infections.

Keep all of what I'm saying in mind vs. what your Dr. tells you. You are different that me, and everything I'm saying should not in any way be considered medical advice. I was also told to be wary of spikes in my body temperature. So, I continually monitor my body temp, taking my it several times a day. I was also told that if it gets above ~100 F for more than an hour to go to the ER immediately.

Oh, and a third benefit to eating smaller meals. You're exercising your swallow muscles more often but in smaller "reps". So to me, I'm keeping my swallow muscles "in shape" and keeping the swallow reflex "alive", so to speak. When I was 20, and in the hospital for four months when I was in the Navy, I had to basically learn how to walk all over again. The reason why was because I was completely bed ridden and literally could not walk because of my injuries I sustained. Eventually, I had to have surgery and the bedridden condition continued. My right calf muscles atrophied so much, I could slap it lightly and it kinda waved at me in the air. Plus having a crushed right hip didn't help any. It was WORK when going to rehab. So I'm exercising my swallow muscles, even though it hurts (a LOT sometimes), according to what my speech therapists at the VA hospital are telling me.

Finally, I've been doing some research into the benefits of aloe vera gargle solution. I can't post the link for my research from the NIH site, but all I did was do a browser search with the key words - radiation therapy aloe vera gargle. I also consulted my RT therapy Dr. about it and he recommended PASTUERIZED aloe vera solution. I haven't started using aloe vera as a gargle solution yet, so anyone out there that HAS used it, please chime in here. The more the better, in my opinion.

Keep up the fight, guys! If I can do it, so can you! We got this.😀

Mark_M

I almost laughed when you said you were watching food shows...so have I!!!! I used to be a big eater (Grandma used to call me "Jethro" from Beverly Hillbillies.

I'm 3 weeks since my last rad treatment and when I eat, it tastes like salty, metallic paste in my mouth. Nauseating to eat that flavor. I feel like I dodged a bullet in that my throat never got that sore. I'm getting 95% of my calories from Ensure and Boost VHC. I have lost about 20#. Some fat, mostly muscle because I haven't been to the gym for almost 3 months now.

Robby67

Great advice and comments. I have a day here and there when I am hungry and eat. And they are coming more often. Taste is better. For me my saliva is like glue. No swallowing problems but I need a lot of water with every bite. I lost 100+lbs. but I had back to back to back treatments for 3 cancers. Colorectal, tongue and epidermal tumor. 90+ rad and 16 chemo and 2 surgeries over a year and a half. So 100 lb loss is probably fair. You all are great. I appreciate your responses they mean a lot

wbcgaruss

My goodness, Robby, back to back to back treatments for 3 cancers. I had no idea you went through so much. I thought I had it tough, you really went through a lot with no break for a year and a half I congratulate you and commend you for getting through all of it. When you read about people like you who have gone through such difficult treatment and times on here it humbles me and I am amazed what people can do, get through, and come out the other end with a positive attitude and move on with life, many cherishing each day more than they ever did before.

Wishing You the Best

Take care, God Bless

Russ

Robby67

Russ. Thank you. But we all went and continue to go through a lot. We all deserve cheers. So cheers to you my friend, if I may call you that.

wbcgaruss

Robby your sure can call me a friend, we are in this battle together and supporting each other as best we can through treatment, recovery, post-treatment problems, and anything else we can do for each other. And if we can gain some new friends in the bargain all the better.

[Content removed by CSN Support Team.]

Wishing You the Best

Take care, God Bless-Russ

Wednesday

I kept telling myself that food is neither my friend nor my enemy. It is a tool that I need in order to provide fuel to my body. It is so hard to let that sink in though. Most people (at least in US culture) are obsessed with food and the rituals surrounding it. We call the kitchen "the heart of the home." When we hang out with friends, we go out to get drinks and/or food. We celebrate special occasions with special dinners or fancy deserts. Before food tasted disgusting to me and then became impossible to eat because of pain, I never realized how much psychology is behind just eating.

Continually reminding myself though that food is just fuel for my body, helped me to divorce my brain from the feeling that my mouth was betraying me or that food itself was betraying me. I couldn't eat with my family, I couldn't taste, and then I couldn't eat at all. Being able to look at that situation from a very logical viewpoint and get away from the emotional aspect of it, really helped me.

I highly recommend getting a really good blender if you can afford it. It is so much more pleasant to just drink your nutrients rather than having to chew and swallow them. All the water needed to swallow food can take up too much space in your stomach and make you full before you've eaten enough calories. Smoothies using peanut butter, bananas, nuts, chia seeds, pumpkin seeds, and all the other healthy and high-calorie ingredients, were what made it possible for me to get off the stomach tube once my mouth healed enough to consume anything again. A lot of people use Ensure and that sort of thing but I wanted to try to focus on high nutrition as much as high calories. If you don't have a nutritionist though or if you aren't really into researching food, then you could always use Ensure as a liquid in your smoothies, just to be on the safe side.

I too watched food shows when food was something I couldn't enjoy. I heard about that type of thing on Hidden Brain from NPR. When we are experiencing scarcity, we become obsessed by the thing we lack. So that explained why, when I couldn't even put water in my mouth without pain, I was torturing myself by binge watching Netflix's entire catalog of The Great British Bake Off. And also why now, a few years later and I can eat fine, I haven't watched a single food show since that time. I was never into food shows before that and my interest in them lasted only as long as my inability to taste or eat.

Don't lose heart! It is temporary and it is a side effect of treatments that are making you better and getting you cancer-free!! It's all part of the process. Just roll with the punches and learn to be okay with the bruises it takes to come out fighting and end up a winner of this battle!

All the best! :)

Merquetio

Hey Wednesday,

Funny you should mention bruises. Have you (or anyone else for that matter) experienced excessive bruising from chemo infusions? My arms look like a junky's! Especially mine since my veins are "buried" as one RN said. I learned a new "trick" from a very senior RN (20+ years doing oncology work). Those warm blankets they give you to keep warm during infusion? Take a freshly warm one, wrap it around the arm the infusion is going in for a few minutes, then unwrap for the RN to insert the infusion IV needle. "Buried" veins problem solved. Yeah, IKR? AND, I have no bruising at that new IV site!

You are absolutely right about getting through the "process", Wednesday. It IS tough going, but if Robby above can get through THREE back to back treatments, surgery, keep his sanity and good spirits, and THEN get on here to encourage all of US??? Yeah, what we're going through is child's play compared HIS ordeal. Thanks for all the good words for us Robby. You give us hope and help us see the light at the end of the tunnel.