Food, Glorious Food: Lung Cancer, Food, and Weight Loss

[scifiknitter]

“Please step onto the scale… You’ve gained 2 pounds since your last visit.”

Me, three years ago: [internal dialogue] “Gosh darn it! I already watch every bite I eat! Does this mean I have to give up chocolate????”

Me, last week: “Wow, that’s great news!”

Like so many of us, I’ve spent my whole life enslaved to the idea that I must be slender to be healthy and physically attractive. Any weight gain was a personal failure. As my weight crept up slowly by a few pounds each year, I tried now and then to cut back on what I ate, but any weight lost was inevitably gained back.

Meanwhile, I love food. I’d rather go shopping for groceries than just about anything else, and a full pantry makes me feel warm and fuzzy inside. Besides acquiring it and storing it, I enjoy cooking it and, above all, I enjoy eating it. Even when I had a job where I constantly worked late, we had a home cooked meal nearly every night, and I was the one doing the cooking; any meal my husband makes is going to rely on oatmeal, fried eggs, canned soup, or pancakes from a mix. He does make homemade yogurt, he bakes bread, and he makes a fine pot of coffee in the morning, so I’m not complaining.

Lung cancer has caused the biggest change to how food functions in my life that I have ever experienced. From talking with fellow patients, I’ve come to believe that sooner or later, nearly every lung cancer patient is going to go through a period where eating isn’t easy any more and where losing weight is all too easy.

One of the early symptoms of lung cancer can be unexplained weight loss. Often we start treatment already losing weight, and lung cancer treatments have side effects that can make it hard to reverse that trend. Many targeted therapies affect the gastric system, and chemotherapy often causes loss of appetite and changes in how food tastes. Radiation treatments can burn the esophagus, making it painful to swallow. All of these side effects make it a lot harder to do something that is supposed to be easy, to eat.

Loss of appetite is difficult to understand if you have never experienced it outside of being sick with a fever. Twice I have lost my appetite during the adjustment period to a new targeted therapy. Fortunately the experience was relatively brief both times, no more than a week or two, but they were difficult weeks, and they were a learning experience. It is possible for one of the things I enjoy most in life to disgust me, day after day, and that reduces the joy in my life by more than I would have imagined. It’s remarkably hard to make yourself eat if you don’t want to.

Weight loss is common in lung cancer patients and not easy to reverse, especially if you are losing muscle mass rather than fat. I’ve experienced weight loss as well, when an experimental drug I was taking caused me to develop hyperglycemia. The drugs I took to control my blood sugar dumped nutrients out of my body unabsorbed, and I lost 20 pounds over 2 months. If I had been 20 years old, I would have been thrilled with my newly svelte body. I wasn’t thrilled, though, I was frustrated and a bit scared to slowly but steadily lose weight despite eating as much and as well as I could.

Changes in taste are also very troublesome to lung cancer patients who are undergoing chemotherapy. I suggest finding a cookbook oriented towards cancer, which will include a lot of suggestions about how to make food more palatable when the taste buds are under attack by chemo. My local cancer center gave me a book distributed by Merck Pharmaceuticals called “Eating Well Through Cancer”, by Holly Clegg and Gerald Miletello, MD. It has many ideas for perking up the flavor of food and avoiding the metallic taste that often makes eating unpleasant during chemo.

What does science say? Three studies I found all concluded that weight gain by lung cancer patients during chemotherapy is associated with longer survival. These were retrospective studies, analyzing data from patient histories. It would be terribly unethical to try to test the effect of weight gain and loss on survival by controlling the diets of lung cancer patients, so scientists will probably never establish a causal link. Still, that association is enough for me to believe that gaining weight can be a very good thing.

Today I am on my third line of treatment, a targeted therapy drug called Tagrisso. I’m happy to report that I have regained all the weight I lost on the experimental drug. It’s not all in the same places it was before I lost it, but I honestly don’t mind a bit of a spare tire around my middle any more. Every time my doctors see that my weight is up, they smile. And after my appointments, I go have a snack, with pleasure and without guilt.

What have you experienced so far with these issues of loss of appetite, changes in taste, and weight loss caused by lung cancer? Is there anything you have done that has helped you enjoy your food and avoid weight loss?

Reference: “Weight Gain as a Prognostic Factor on Patient Outcomes in Advanced, Nonsquamous, Non-small Cell Lung Cancer”, J. Chen. library.iaslc.org/search-sp...

Photograph By Bukephalos (Own work) [Public domain], via Wikimedia Commons

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I know cant fix one with out fixing other.

I was told to stay clear drugs with magnesium as that coats guts and stops food being absorbed.

Guess thats why milk magnesium works ALSO was told to pig outon peanut butter as settles guts and as gut toilet friendly oil.

Also you need fast absorbing food stuffs CF suffers know what i mean.

Then we get to muscle I have been experimenting with un carbonated lucozade as muscle needs oxygen to grow AND by all accounts if taking that stops body sucking your reserves dry.

Nothing is ever easy and information is so fragmented between specialist

[Denzie Moderator Volunteer]

I can relate to so much if this. In the year before my diagnosis I was on a very strict diet. I lost 40 lbs and hit my weight goal. Little did I know it was actually the cancer at work, too. With the help of the steroids they put me on I gained 60 of those pounds back.

[Enjoyabull]

I have no appetite and the thought of chewing nauseates me. How do I get past this? I am on Carboplatin and Gemser but my lymph nodes are so swollen in my neck I feel like I cant swallow.

[scifiknitter Blogger in reply to Enjoyabull]

Enjoyabull, it sounds like high calorie smoothies and nutrition drinks could be a major part of your diet right now. I wouldn't worry about sugar content, you need as many calories as you can get. Make sure you are getting fat and protein in the smoothie as well.

Anita

[Enjoyabull in reply to scifiknitter]

Thank you! Im drinking Enlive and a warrior blend vegan protein smoothie. I add milk egg whites and peanut butter.

[Jenniferroseolson]

I lost 25 pounds after I was diagnosed when I was gravely ill. I gained them back as the chemo began to work. I was a few pounds heavier than I wanted to be, but then I had brain surgery. I then gained more weight...I'm 45 pounds heavier than my ideal weight before cancer. The massive doses of steroids combined with inactivity are the cause, combined with too much comfort eating. My appetite is good except for 2-3 days after chemo every 3 weeks. I feel like I'm the only person I know who gets fat with cancer. I know it's better than losing too much weight, but it's difficult to adjust to this body

[scifiknitter Blogger in reply to Jenniferroseolson]

How fascinating to think of seeing the world so differently...

[FtB_Peggy in reply to Jenniferroseolson]

Jennifer,

Be patient with yourself and your body. Your body is working so hard right now and I know seeing yourself differently is really difficult, but embrace it if you can! Truly, it is beautiful the way you and your body are plowing through the treatments and fighting the disease.

Honestly, you are perfect. There is only one you. Wonderful you. Miraculous how our bodies fight for us!

[Beverly1956]

I too am taking tagrisso and have problems eating, nothing tastes good, Its like when I take a bite of something that used to taste good and now its not so good. Losing weight is easy and I mostly am drinking instant breakfast by carnation, you can add milk, coconut milk or whatever milk you like. can add fruit if wanted. I too was on a trial which only worked for a few months, was waiting for the new drug coming out soon, I use plastic forks and paper products. No metal, tastes funny. Good luck on your tagrisso experience.

[scifiknitter Blogger in reply to Beverly1956]

Beverly, my Tagrisso experience is a lot milder than yours. Sorry to hear about the effects on your ability to eat. It must be affecting your tongue in much the same way as chemo notoriously does. I wonder if you are running into dry mouth.

There's lots of advice in that cookbook I mention above about dealing with chemo related taste problems. It suggests rinsing your mouth out with saline solution, tea, or ginger ale before eating to clear the taste buds. When Tarceva gave me dry mouth, my dentist suggested sucking on hard candies made with xylitol and using mouth sprays for dry mouth - they helped.

I know that chemo is in my future, so my husband gave me a set of bamboo eating utensils for Christmas, neatly packed in a carrying case.

What trial drug were you on - the Clovis drug? That's the one that caused me to lose weight.

Anita

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Another helpful post, Anita. Thanks.

I welcomed the loss of about 15 pounds while in treatment for my Stage II NSCLC. I'm tall and was carrying about 20 pounds more than necessary anyway. For some odd, cancer-makes-you-delusional chemobrain reason, I had figured that my extra weight was gone for good, eaten up by the chemo (not really) and how dare my body do that to me again after everything I'd been through! Oops. I've regained all the weight, making me a walking testament to the power of cheese and pasta. My only hope is another round of chemo, I guess. (Kidding, I'm kidding.)

[scifiknitter Blogger]

Yes, cheese and pasta are powerful and mighty foods. For me, a day without cheese is like a day without sunshine.

Being able to regain weight is a sign of a return to a more normal metabolism and one thing made clear by the study of how diets fail is that a healthy metabolism is very effective at maintaining things just as they are. It's kind of cool, isn't it, that your body remembered what it was like before cancer treatment and has reestablished that former state where it could.

Happy new year!

Anita

[Nancee54 in reply to scifiknitter]

Anita I can't seem to gain weight no matter what I eat. I weigh 82 pounds, what's the secret? Nancee

[scifiknitter Blogger in reply to Nancee54]

Nancee, my secret right now is a treatment that doesn't stress out my digestive system. Has your doctor talked with you about your difficulty in keeping weight on? Does the medical facility you work with have a nutritionist who might be able to help? I'm not qualified to give advice beyond general recommendations seen all over to eat snacks or multiple small meals, add calories to the liquids you drink (such as nutritional shakes). Are you able to get any exercise? Moving your body a bit more might stimulate your metabolism in a healthy way. I wish you well, hope you can figure out something that works for your situation.

Anita

[Nancee54]

Thank you Anita. I appreciate it.