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.

Jump to this post