Any thoughts on turning around cachexia (wasting syndrome)?

[Jim_S_Boston]

I was first diagnosed in 2005 and have had a number of treatments through the years. Starting with triple hormone deprivation (Lupron-Finasteride-Casodex), prostate radiation therapy in 2008, then in 2014 chemo (taxotere), 2015 cryoablation of prostate tumor mass, 2016/2017 Zytiga followed by Xtandi, 2017 Xofigo. In Dec 2017/Jan 2018 I had a second round of radiation for a recurrent prostate lesion. Pretty much covered the waterfront of available treatments, each of which had some success at delaying, but not halting the progress of the disease. My PSA is currently quite low (0.2) after the second round of rad, but doubling every 2-3 months. Bone mets have remained dormant since chemo in 2014 and 2017 Xofigo (Radium-223) (knock wood).

While I was dealing with the various cancer treatments over the last year, something slipped up on me...cachexia (wasting). In June 2017 I weighed 170 (I'm 5'10"--my normal weight) and over the course of the next six months I slowly drifted down to around 160, which I did not consider outside my normal weight range. However, in the first six months of this year, my weight has dropped from160 to 140 (!), even though I am not anorexic and still eat a pretty varied and extensive diet. When I noticed the weight falling below 160 I actually began eating more throughout the day supplemented with fat and protein rich smoothies between meals. Under normal circumstances, I would be gaining weight at the rate I am eating. But..I'm..not.

I didn't even know what cachexia was until I developed it, but researching it online is pretty discouraging. No effective treatment, responsible for 30% of late-stage cancer patients, etc. Apparently, the body decides it is an a starvation mode and shifts the metabolism in favor of catabolic (muscle/adipose consuming) processes while suppressing anabolic (muscle building) processes, even if you are actually well nourished.

Sorry for the long back-story. I'm curious if anyone has experienced this and been successful at turning it around or at least arresting the weight loss. I'm in the ironic position that my PCa is actually pretty well controlled, but this wasting process is threatening my health and certainly my quality-of-life as it leave me fatigued and too tired to participate in the activities I am accustomed to. (It may also preclude any future aggressive treatment because I have been weakened by the wasting condition.)

Any helpful tips from the experience of others would be greatly appreciated.

Jim

[ctarleton]

An article like this might give you some ideas to discuss with your doctors.

cancernetwork.com/oncology-...

Charles

[Jim_S_Boston in reply to ctarleton]

Thanks Charles. I had come upon this recent paper, too. Not very helpful or hopeful, is it? Bottom line is that the docs are flummoxed by this condition.

[YostConner]

I’ve had significant muscle wasting over the past year after going off Zytiga/prednisone and going on Xofigo. Upper body and legs were hardest hit.

[Jim_S_Boston in reply to YostConner]

For me it has been primarily my torso and arms. I’ve gone from size 38 pants to 34 and those are getting a bit loose. Wearing a belt AND suspenders now. lol

[MelaniePaul]

Hi Jim.

Paul used to take Megace (don't know if the spelling is correct). It is a steroid which stimulates appetite. However, because appetite is not your problem, I am wondering if the cancer is growing undetected somewhere and if you should request further scans? Usually weight loss is associated with more tumor growth, or I should say that often what we see when the cancer has become more aggressive is weight loss.

Mel.

[TommyTV]

Hi Jim

I’ve had muscle wastage now for over six years, due to the ADT of Zoladex, Zytiga and Prednisone. I haven’t lost any weight, in fact I struggle to keep my weight down. I am seriously affected in my thighs and upper arms, to the point where I’m registered disabled. I personally feel the weight loss needs greater investigation, as ADT is well known for weight gain.

[Shooter1]

Brother laughed at me this morning saying I looked like my 93 yr. old grandmother had. I had gotten warm and taken off my long sleeved shirt. Wattles hanging under my arms were I was muscular 18 mo, ago. No T and taxotere and Xtandi have definitely effected my body. Weight down 20#.

Doug-AZ

[Jim_S_Boston in reply to Shooter1]

Yes, I have them now, too, and so did my Granny. I’ve also heard them called ‘wings’ or ‘bingo wings’. Don’t sleep too near the edge of the bed or one my slide off and flip you on to the floor.

Its interesting how I can look in the mirror nowadays and variously see my Dad, my Mom, or one of my Grannies looking back at me (both my grandfathers were dead before I was born). Circle of Life.

[Avemariae]

Zytiga causes liver disease. Have 'complete abdominal ultrasound' by radiologist every 3 months for a diagnosis. Have 'AFP' blood lab for liver disease. Mayo Clinic rec having done 3 months apart. You need lots of protein equal to grams 1/2 your body weight. Take Silymarin or 'Siliphos' by Thorne Research. You can heal liver if not too cirrhotic, if that is your new problem.

[TommyTV in reply to Avemariae]

Zytiga DOES NOT cause liver disease. Wherever did you get that idea? It can affect your liver function, which is totally different.

[Josephaloysius]

Hi Jim

What’s your latest status dealing with CACHEXIA