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

Posted by Karyn @kj9, Jun 10, 2020

Hi, I'm pretty new to this group but I've seen the support and help you all give each other and I think it's great. I"m writing today because my mother was diagnosed with lung cancer. We are being seen by an oncologist and receiving treatment. Where my sister and I need help is with getting her to eat. to make a long story short, my mother was doing okay until recently when the docs found an arrhythmia and prescribed a blood thinner. Well my mother ate her self up with worry about taking the medicine. She worried so much and she lost a lot of weight. Having lung cancer and losing weight is not a good combination and my problem now is she only eats about 700-900 calories a day. Not enough to gain any weight and certainly not enough sustain yourself. She has always been a petite person but now she is so thin, my sister and are afraid. She doesn't have enough energy to do anything, she's constantly so tired. we try to tell her it's because of lack of nutrition. My sister and I are trying everything to get her to eat enough food in a day. My question is, has anyone experienced this? or have loved one who has gone through this? do you have any suggestions on how to get them eat? open their appetites? what kinds of food might work? I appreciate any thoughts and ideas. My sister and I are at out of our minds with worry. Thank you in advance for your support.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Merry, Alumni Mentor | @merpreb | Jun 17, 2020

In reply to @upartist "Hi Kj9. I am sorry about your Mom’s situation. While the diagnoses cant be changed, you..." + (show)

@upartist- What a wonderful story! Thank you for sharing.

Karyn | @kj9 | Jun 17, 2020

In reply to @merpreb "@mjkrr2- What a horrible time for you and your family. Perhaps you would like to meet..." + (show)

thank you for letting me know. I will check the health group. I appreciate the information.

Karyn | @kj9 | Jun 17, 2020

In reply to @upartist "Hi Kj9. I am sorry about your Mom’s situation. While the diagnoses cant be changed, you..." + (show)

Hi upartist thank you so much for sharing your story, it is very touching. I"m glad to hear that what you did worked and your Dad started to eat which gave you more time. I shared this idea with my sister and we are going to try it. My concern is that my Mother won't eat them. But we are going to do it anyway. thank you again.I appreciate it. KJ9

Karyn | @kj9 | Jun 17, 2020

In reply to @mylife1 "I was stage 4 when I was diagnosed 2 years ago with Ovarian Cancer. Symptoms of..." + (show)

@mylife1

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.

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Dear mylife1, what on ordeal you went through! you must be a very strong person to have experienced all of that and came through to share your story and encourage others. After hearing from so many people, I"m now so afraid of this cachexia! I just hope my mom has the strength needed to get through this, like so many of the people I've heard from here have. I"m curious, your last line reads "food is not enough" I'll try to find the research but what do you mean by that statement, what else can be done? I wish I had known about this sooner, I would have insisted a little harder that Mom keep her food intake up or kept a closer watch.... I just feel sick right now...YOur mom sounds like my mom. the way she cared for you, is something my mother would also do. My sister and I are trying to do that for her now, we are there 24/7. she's not alone and we are always planning with her on what to eat and have for snacks. I am going to try @upartist idea with putting snacks and food around, hopefully, my mom with start to eat those and more on her own. I wish you the best and thank you again for sharing your story.

Karyn | @kj9 | Jun 17, 2020

In reply to @mjkrr2 "So sorry your Mom is having a difficult time. Last year I was experiencing loss of..." + (show)

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

kittymom | @kittymom | Jun 17, 2020

My Dad (80 years old) had Small Cell Lung Cancer. After his first round of platinum based chemotherapy treatments he lost his appetite and when he did eat it was very little quantity. He tried Ensure and other liquid protein shakes as a supplement to meals to boost his calorie intake. I cooked all his favorite foods, but nothing was helping him maintain or gain weight. I suggested medical marajuana. It was no surprise that his response was "I don't take dope!!!!”. He was an Air Force veteran (42 years of service)!! After having a talk with my husband (who is a Doctor Of Pharmacy) and I (an RN), we explained that this isn't “dope” as he may think of it. We assured him he wouldn't get "high" he would be getting the properties extracted from the plant that help stimulate his appetite and control nausea. We picked up a prescription from the Oncologist and drove to the dispensary. We chose liquid drops that he dropped under his tongue. He tried them on our drive home and in about 10 or 15 minutes he looked at me and said "I'm starving! Let's stop at Dennys and have breakfast!!!!!”. I was so happy!!! Problem solved. He couldn’t eat large quanities, but he could eat several small meals each day. We always sat down together for meals so it seemed less of a task for him and more enjoyable to eat and talk. This really worked well for him. FYI, many oncologists have an RN that is trained to help patients and families with questions and problems such as yours. They are wonderful resources! At the risk of repeating what others have said, every cancer patient is unique. Their whole life begins to revolve around cancer, the treatments, doctors, medications and advice from people who mean well. Dad said he felt like his whole life was taken over and he had little to no control. His quality of life diminished when he couldn’t do simple everyday things without getting short of breath (like walk to the end of the driveway to fetch the morning newspaper) as well as activities that made him happy (like his daily 2 mile walk). He always kept a positive attitude and denied depression. He only complained that he missed going on his daily walks and he hated wearing oxygen (it embarrassed him). We had real down to earth conversations about how he was feeling without tip toeing around subjects. He really appreciated the raw honesty and being able to let down his guard and say whatever he felt without any judgement or guilt. It was important to him to have a little time to himself with me hovering. We also went on long drives in the countryside just to get him out of the house. I wish you and your Mom the best! We are all here for you!!

Karyn | @kj9 | Jun 17, 2020

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.

Becky, Volunteer Mentor | @becsbuddy | Jun 17, 2020

In reply to @kj9 "Dear Kittymom, your story also moved me. I read these stories and tears come to my..." + (show)

@kj9. Just to reassure your mom: there is nothing in megace that could make her high. Oncologist have been using it for a long time!

Merry, Alumni Mentor | @merpreb | Jun 18, 2020

In reply to @kj9 "Hi @mjkrr2, thank you for sharing you story. the doctors here have suggested Megace, but my..." + (show)

@kj9- I had a similar problem with my mom but about giving up driving. We finally had to take her in hand and go to the doctor who phrased things in a way that hit home. She didn't have to give up her license but she couldn't drive anymore because she didn't ever want to kill anyone. I truly believe at times like this it's important to have her talk to someone she trusts and who will listen other than family. Sometimes with mothers and daughters it can get sticky! What do you think?

Merry, Alumni Mentor | @merpreb | Jun 19, 2020

In reply to @kj9 "Dear Kittymom, your story also moved me. I read these stories and tears come to my..." + (show)

@kj9- Am wondering how you and your mom are today. Have you and your sister talked to her doctor? Has she become a member on Connect?

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