Mom diagnosed with Lung Cancer. Need advice on helping her to eat

@shortshot80- I hate the way I resemble my mom too, but more in personality then in looks. How have you been feeling?

I'm not sure why this topic isn't repeatedly drilled into cancer patients. Google browse cachexia. It's an end-stage cancer symptom that quickly sneaks up on patients. It starves you to death. Forget that you don't have an appetite, that food doesn't taste good or it makes you nauseous, you need to eat otherwise the cancer will takeover. However, once cachexia sets in, it cannot be reversed by nutrition alone. The ingredients in Ensure can help reverse it. ProSure made by the same manufacturer has some very good literature on the internet about cachexia. I had cachexia when I was diagnosed. Fortunately it reversed with the help of 3 chocolate Max Protein Ensures mixed with Miralax daily, which seems to make it a little sweeter. Now, even if I lose 1 pound, I add Ensure back to my diet.

@mylife1- Good morning and welcome to Mayo Connect. Cachexia, or wasting disease is very complicated and scientists still don't know its entire mechanism. It involves several organs and can lead to death. Losing muscle and fat can make it look as though you are wasting away. This can all be made worse by the side effects of the cancer treatment you are having. Not everyone who has lost weight has Cachexia. @kj9's mom is still in the early stages of her treatments. When I first was diagnosed with lung cancer I dropped 5 lbs over-night due to nervousness. I also lost 15 lbs during chemo that lasted 4 months and I'm petite. I went from a size 4 to a 00 and they were loose.

There are many myths surrounding cancer- eat to starve it, starve to destroy it, and many others.

Diet can certainly affect how you feel and help or hinder certain cancers but the loss of weight beyond a certain percentage of body mass doesn't always indicate a person is wasting away and dying from it. I'm certainly glad that you were helped by taking diet supplements. Are you at end-stage cancer? Is this why you had Cachexia?

Eating, lack of appetite and weight loss are some of the most challenging side effects of cancer for both patient and caregiver. Food is integral to our lives, not only nutritionally, but also socially and culturally.

@kj9 as you can see from the responses you've received, lack of appetite can have many contributing factors. These suggestions are worth exploring with your mom's cancer team. Have you ever consulted with an oncology dietitian? They are experts specializing in nutrition of cancer patients and may be worth exploring for your mom.

@mylife1 I appreciate learning about your experience with chachexia. I found this article from Healthline that explains it in simple terms
- Cachexia https://www.healthline.com/health/cachexia

Did or do you also take appetite stimulants such as megestrol acetate (Megace)? This has been suggested to @kj9's mom, but she is worried about side effects from Megace. What was your experience?

Mylife1, what type of cancer do you have?

So sorry your Mom is having a difficult time. Last year I was experiencing loss of appetite due to major surgery and lost a lot of weight. I should mention I didn’t have cancer but spent 7 months in the hospital, 4 of those in ICU and for 6 months I was not able to eat any food but given all my nutrition through a feeding tube. I still had a feeding tube when I came home but was slowly introduced to food, I was working with a dietician and the goal was to get my caloric intake up to 1200 calories a day before they would remove the feeding tube. That was a great incentive but I was very nauseated. At that time my family doctor suggested I try Nabilone which is medical marijuana. It is a product we have in Canada, and is suggested after chemo to enhance appetite and help with nausea. It worked very quickly and I take a low dose. Last month I decided to stop taking it because I have gained weight and feel good. After a week the nausea was back and I lost almost 5 lbs., I had to force myself to eat even a piece of toast. Yesterday I started taking it again and I was able to eat last night. I hope your family is able to find a solution. Don’t give up, as you know it’s not just about the patient but it affects the whole family.

@mjkrr2- Welcome to Mayo Connect and good morning. Those must have been some very scary months for you. You're correct, striving for a minimum of 1200 lbs is the safest goal for weight gain. If there was ever a time for medical marijuana it's for weight gain! Great suggestion. I hope that you are on the road to recovery. Do you have any idea why your nausea returned? Did you have a type of gastric operation? Perhaps you are still healing?

I had an ERCP done and almost immediately was very ill, had to return to the hospital by ambulance just a few hours after being home. It’s maybe a 7 minute trip to the hospital and I have no recall after that until the end of April 2019. I had catastrophic necrotizing pancreatitis. I was airlifted on life support to larger university hospital and had to be on life support 4 different times, I am 73 but was very healthy prior to this and led an active life style. I finally got well enough for surgery and had my pancreas removed. Needless to say we are all very grateful to our medical team. My family truly kept me going when I wanted to give up, they wouldn’t let me. It has been a life changing experience for sure and I still have a ways to go but in lots of ways I have gained so much through this journey. Not many people get to experience the kind of love and friendship that has been given us, and I think I really know what is important to me now. Now being in isolation seems totally fine for me. That is not to say I don’t have some bad days still but they are fewer and far between. I am learning to take better care of my body and listen to it! Thanks for the response.MJ

@mjkrr2- What a horrible time for you and your family. Perhaps you would like to meet other people who have also undergone something similar.

Our Digestive Health group has several discussions:

https://connect.mayoclinic.org/discussion/roux-en-y-surgery-scheduled-early-september/
https://connect.mayoclinic.org/discussion/nausea/

I was stage 4 when I was diagnosed 2 years ago with Ovarian Cancer. Symptoms of my disease were ascites, edema in my legs and cachexia. I was in very bad shape. Fortunately, I was treatment naive and I had a great response to neoadjuvant chemo, not only in shrinking my cancer but also reversing my end-stage symptoms. Unfortunately, for patients who are farther along in their cancer treatments, not being able to control progression plays a major role in developing cachexia. Cancer progression, ascites and cachexia all contribute to the other end-stage symptoms' development, ultimately culminating in death.

Read the link for the article Colleen Young posted. 80% of end-stage cancer patients have cachexia. Statistics have shown that as many as 50% of ovarian cancer patients die of malabsorption. Cachexia is not a myth. It is not understood and very difficult to control. You're right in that not all weight loss is cachexia. However, cancer patients inherently have the underlying condition that causes it. Cancer itself. Add to it insufficient nutrition and you're set up for disaster.

We all know that it's easier to prevent a condition than it is to resolve it. Why play with fire?

It's a long story why I let my condition get so bad, but I struggled to stay alive when I was first diagnosed. I literally looked like a holocaust victim who was pregnant with twins. I am not exaggerating. I had 16 lbs of full-term twins 23 years ago so I know first hand what it looks like. A total of 27 liters of ascites fluid was drained during the first month. It was a slow process that took 7 separate drainings. My body was so emaciated that my tail bone stuck out like an gigantic sweet potato that eventually became ulcerated. I couldn't eat because my abdomen was so taught with all that fluid, it compressed all my organs. The fluid eventually gravitated to my legs and I was unable to walk.

I was very fortunate to have my spry 82 year old mother as a caregiver during that first month after diagnosis. I wasn't on chemo yet so I was still loaded with disease. After each fluid draining of approximately 5 liters, my organs would have severe cramping spasms. It was painful to sit, move or eat. My mother would make me small meals every couple of hours around the clock. I ate a bite or two from a piece of toast or 3 or 4 teaspoons of soup at the most per sitting. But I ate and drank all day long and also added fresh carrot juice, the Ensure protein drinks with Miralax and many vitamin supplements. I couldn't be active as my legs felt like tree trunks. I needed to be pulled off the toilet and would sometimes collapse on the floor as my legs gave out. So my walks were usually only in a wheelchair. But the activity I struggled with most was sleeping. I tossed and turned all night due to my giant tense belly and sore tailbone. I was on strong opioids but even the effects of that didn't last for more than a couple of hours. I was seriously considering taking my own life if my condition didn't improve.

Fortunately, the symptoms begin to permanently resolve once I started neoadjuvant chemo a month later. Four months later my CT Scan showed I had an excellent but partial response to chemo. Most of my cancer was gone. I was back to my 127 lb weight, my appetite was normal and my new hobby was going on bike rides. I felt better than I have in 15 years.

Only when I requested my medical records for a second opinion did I find out that I had cachexia. Then I knew why I was so thin and why all my efforts to gain weight were exhausting and fruitless. The only nutritional advice I was given when I was diagnosed was to try to eat more fatty foods. My son actually suggested Ensure based on some internet research. My current medical oncologist treats mainly cancer patients that have been told there are no more treatments for them by their previous oncologist. Some come to the office for infusions wheeled in on beds. He keeps Ensure on display in his infusion room.

I am so grateful that I overcame my initial condition. I vowed that I'd never let that happen to me again and I would get the word out about cachexia and it's devastating side effects. How it can creep up on you and what a battle it is to try and reverse it. Typically a cancer patient doesn't live to talk about cachexia.
I encountered cachexia at the beginning of my cancer journey, overcame it and am alive to share my experience. The hope is that my story will change the course of vulnerable cancer patients who are hoping for another chance at life before it's too late.

No one knows when your body transitions from simply losing weight to cachexia. The easiest way to avoid it's devastating effects is by preventing it, not reversing it. Read the research. Food is not enough.

Hi Kj9. I am sorry about your Mom’s situation. While the diagnoses cant be changed, you and your sister may be able to impact the quality of the process with little things. When my Dad experienced the cachexia following removal of his esophagus, we quietly left little snacks everywhere. Those snacks included the boost extra, small portions of dinner, potato chips, candy, various beverages, and anything else we could think of. We figured out which “tastes” were pleasant and which ones to avoid. His “taste” became very different from what it was before. We took off all the pressure to eat. He began to nibble. We were able to stop the progression of the cachexia, but not really recovery. His quality of life improved dramatically, as he gained some energy. We were able to have 10 more years with our very skinny Dad. I hope that you and your sister will be able to celebrate your lives together with your mom, and feel the beautiful bond you clearly have.
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