I’ve never started a thread so please forgive me if I’m not being helpful.

I was wondering why we don’t hear more about Cachexia?

I was diagnosed with Cachexia roughly 5 years ago and was told I’d be lucky to survive a year or so. I truly don’t know how they came up with that prognosis since Cachexia is not a very well understood syndrome.

The docs (all of them -my entire care team) had only a vague understanding of this condition.

It’s been an incredible journey trying to treat what isn’t clearly understood.

Since you received this diagnosis have you radically lost lean body mass? Has your weight, strength, or any other muscle issue been dramatically changing?

The name describes a process, which is caused by some underlying condition. The list of what can cause this is pretty long. Obviously cancer is one if the most dangerous causes. What are they doing to work through the list of differential diagnosis possibilities? It sounds from your post that they know it’s happening, but they are not actively pursuing cause. If they are not, I guess I’m curious why since there may be some mitigating ideas that could be applied to some of the possible reasons this is happening. B

Hello and thanks so much for your interest and inquiry. I have indeed lost lean body mass. I went from 130 pounds to 90 pounds in an incredibly short period of time. My Care Team had determined I was suffering from cachexia because I lost over 40% of my weight over 3 months. That set me on a journey of a myriad of testing, which showed I lost not only regular fat, but “brown” fat as well. My bones became incredibly brittle and despite all attempts to address the issue nutritionally, I continued to decline. Multiple imaging studies showed that my muscles were also severely atrophied. I remained unable to gain weight regardless of any diet or feeding attempts I tried. It’s an extremely dire situation because cachexia is poorly understood and to date there is no viable treatment. I have progressed to the point where my heart (which is a muscle) has been affected.

Because they believe I am cancer free now they cannot determine the etiology. It is assumed that it is a long term effect of the chemotherapy and radiation therapy I underwent.

I have spent over 5 years battling this wasting syndrome yet none of the best specialists in the country can come up with a treatment plan.

No matter how much I eat it is a constant battle to maintain weight. No physical therapy has helped me regain strength or rebuild lost muscles. I am literally “skin and bones”, and ironically those bones are crumbling apart. I have numerous spinal issues, constant stress fractures in my feet and am so weak I sustain injured muscles just from moving the blankets on my bed.

Another distinguishing feature of this disease is temporal wasting. I truly look like a starved and emaciated person.

I should add, at this time they are simply providing palliative care. I’m assuming that means they’ve given up on any attempt to “cure” me. I’m only 57 yet I’m so frail I appear to be in my 90s.

I’m sorry to hear how advanced this has become. I wish you the best possible future. While I also have had difficulty maintaining body weight, I’m nowhere near in your situation and would not put out there that I can relate to your situation.

My situation was more sarcopenia and while quite thin and not super strong, I have pushed back from my lowest weight and being in a wheelchair unable to stand or walk, to graduating to a walker, and now pretty much walking on my own, but slowly. That was all accomplished though a PEG tube diet of my own creation in a blender, and several times a week physical therapy to build back some lean body mass. I wouldn’t say that things are normal, but they are manageable where I am. However progress plateaued a few months ago though I continue to try and pushback against all this. It takes a lot of effort and time. But I need to at least maintain the place that I have fought to get to.

Wish you better answers in the future. I’m going to reach out to some researchers I know in allied areas. If they say anything fruitful I will post it here. I wish I had something more insightful to contribute, and absent that something better stated for my desires to see you improve. I hope that your ability to manage the emotional aspects of this situation stay strong.
Brian

I would like to thank you at the start for taking the time, extending your experiences and personal insights to reply to my inquiry. I have come to understand how sharing your experiences can put you in a vulnerable position and become a catalyst for re-living traumatic experiences. It’s a very hard thing to do based upon my personal experiences, yet you have elected to do so, in the hopes it will help others.

I’m also ashamed that, being a 16 year (old timer) I have in no way come close to the level of support and dedication you have given.

I understand we should never assume we can (put ourselves into) or totally understand and hence empathize with others, I appreciate your etiquette. I do believe though that the level of “shit” with witch you have had to abide gives you an entirely clear comprehension of the level of “shit” with which I have contended.

“My situation was more sarcopenia and while quite thin and not super strong, I have pushed back from my lowest weight and being in a wheelchair unable to stand or walk, to graduating to a walker, and now pretty much walking on my own, but slowly.”

I applaud your perseverance and strength. Although you may not realize, your achievements are to me a nearly a miracle. Do not undervalue your achievements for what you have successfully accomplished many of us still struggle to achieve.

“Wish you better answers in the future. I’m going to reach out to some researchers I know in allied areas. If they say anything fruitful I will post it here. I wish I had something more insightful to contribute, and absent that something better stated for my desires to see you improve.”

I truly hope you understand the answers you have given me are worth more than the purest gold.

I can relate to you struggle and your achievements are inspiring.