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

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.
UPartist

@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/

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.
UPartist

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.

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.

Dear Kittymom, your story also moved me. I read these stories and tears come to my eyes. thank you for sharing your story. I'm sure my mother's reaction would be the same to the medical marajuana, that is one reason she is holding off on the megace. I"m so glad that it worked for your Dad and it sounds like you made sure to create quality time together. I will put in call to the oncologist nurse, the doctor himself suggested the megace, but I'll talk with his nurse as well. thank you again, so much. I appreciate your thoughts.

Hi @mjkrr2, thank you for sharing you story. the doctors here have suggested Megace, but my mother, right now is so set against taking it. I hope we will be able to change her mind but we'll see. THank you for letting me know your experience and what worked for you.

Has anyone out there taken Megace? (I'm not sure I'm spelling it correctly) how did you do on it? any side affects? I would appreciate hearing from anyone who has taken it.
thank you

Dear Kittymom, your story also moved me. I read these stories and tears come to my eyes. thank you for sharing your story. I'm sure my mother's reaction would be the same to the medical marajuana, that is one reason she is holding off on the megace. I"m so glad that it worked for your Dad and it sounds like you made sure to create quality time together. I will put in call to the oncologist nurse, the doctor himself suggested the megace, but I'll talk with his nurse as well. thank you again, so much. I appreciate your thoughts.