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Rochelle’s letter: “Cancer cachexia has made life as I knew it unrecognizable.”

Dear Scientist,

At the age of 48, I was diagnosed with incurable breast cancer. Ten months later, I was informed that I had also developed “wasting syndrome.” Over time, this cancer cachexia (as it is medically known) has made life as I knew it unrecognizable.

After starting treatment for breast cancer, I immediately noticed my desire to eat fading each day. It took every ounce of energy to eat because I was exhausted and nothing tasted “normal.” 

When I went for treatment in January, my doctor noticed I had lost weight and encouraged me to eat whatever I could. And I did try, but I couldn’t hold down my food.  

During treatment in February, I was pulled aside and told that I had developed “wasting syndrome” AKA cancer cachexia. My first thought was, I have WHAT??? At this point, I had gone from 130 lbs to 100 lbs from December to February. Not another thing to think about and fight against!  

Eating became a chore. Everything about it was hard — preparing meals, smells, the look of food, tasting it. It felt like I was eating paper. I knew something was drastically wrong because I was a bona fide foodie! 

Then, eating hard solids began to hurt my throat and chest so I started a liquid diet. I began to have issues with my teeth. So now, in addition to everything else, I have to see a dentist every 3-4 months for a specialized cleaning so that I don’t lose my teeth!  All of the “particulars” that I needed to think of and consider felt like a full time job! How can I do all of this and try to maintain a “regular” lifestyle? 

Needless to say, the idea of eating, or should I say not eating, has further made me feel isolated and caused significant anxiety and depression.  

Socially, things are totally different. I’ve lost friends, the career that I knew, and some of the activities that I love most, which are traveling and community service. We don’t go out much because I’m tired and not comfortable doing the things I used to do. 

I hit my rock bottom in March 2021 when I got down to 94lbs from 130 lbs in less than four months. 

My biggest fear is the impact that cachexia will have on my overall cancer diagnosis. I wonder about having complications to my illness, dying, leaving my husband, my family and friends, but I’ve realized that I can’t focus on that. My focus is on healing and ensuring that I eat so that my treatment will work! I refuse to give up and I’m determined to rebuild my “new” life!

I am the beneficiary of medical advances that have extended my life and continue to provide options for me to manage my cancer. I am eternally grateful and would ask scientists to continue to do whatever you can to develop potential medicines that can help with the physical and mental changes experienced with cachexia.

Sincerely,

Rochelle

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