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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?


Age 57
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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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.


Age 57
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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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


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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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.


Age 57
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Feb 2012
Posts: 22
Likes: 2
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Posts: 22
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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.


Age 57
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Mar 2002
Posts: 4,860
Likes: 27
OCF Founder
Patient Advocate (old timer, 2000 posts)
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Posts: 4,860
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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


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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