Anyone experience CACHEXIA?

[MyMiracle13]

Hello all. As you know I was recently diagnosed with brain Mets and progression of my lung nodules. I noticed too that I have been losing weight and muscle mass quite fast. Around 10 pounds in the last 3 months. Anyone experience Cachexia and is there a way to mitigate or reverse it? Special shout out to Anne and Sandra as you are our “go to “ resource persons.

[Hidden]

Sandra...I've run into similar problems...I think the site times out if you don't send quickly enough or pause to get a cup of coffee. So what I do sometimes is either copy/paste before I step away or write in "notes" (apple) or Word to avoid the heartbreak of having to start over, especially since I find that the second shot at it is never as good as the first!

[Hidden]

Wow! I had no idea what this was, but just searched on Cachexia and learned that it's very common in people with MBC (one NIH study said "more than 50%" and an article in Nature said "the majority of patients with metastatic cancer" develop it!!

Thank you so much for raising the topic/bringing it to our attention!

I'll definitely do more research and hope that others with knowledge/experience chime in!

[MyMiracle13 in reply to Hidden]

Thank you Lynn. Can you send me the links where you searched on Cachexia? And please let me know what else you find in your research.

[Hidden in reply to MyMiracle13]

Here's the Nature article... nature.com/articles/s41568-...

[Hidden in reply to Hidden]

And here's an NCBI article, not 100% certain it's the one I read (scanned):

ncbi.nlm.nih.gov/pmc/articl...

My take on this, based on very little knowledge, is that it might apply to people "further down the road"? Like, when I first read about it, I thought, "My gosh, is THIS why I've lost five pounds??? I've been exercising, and I do IF to kill cancer cells, so I attributed my weight loss to these activities. I've sort of taken a breath now and concluded that I've lost weight (roughly 4% of my body weight) for good reasons, not anything serious and foreboding (sp?) like cachexia? I'm thinking this might be more of an end of life thing? I'm certainly interested to know...

Be well,

Lynn

[MyMiracle13]

Thanks Sandra. I understand the problem. I think I tried a few times before my post went through. I really do appreciate all the help you have given and are giving me.

[hopefulinadks]

Can you do Radiosurgery on the brain mets? I have notice my right thigh is losing muscle mass because I have cancer in my foot and can't walk well. I have been trying to ride an exercise bike as I can't do walks anymore. I will be getting stereotactic radiosurgery on my foot starting next week. I lost 25 pounds in 3 months on the keto diet and IF so you aren't doing too badly with weight loss. My weight has stabilized and I hope yours does as well.

[PJBinMI]

Excellent point! I'd underline your first sentence about five times in red ink if I could! It would be helpful to our discussion(s) here if we would all remember to differentiate what our oncs (and other specialist docs) have told us and what we read elsewhere and wonder about.

[MyMiracle13 in reply to PJBinMI]

Sometimes what we wonder about comes true.

[MyMiracle13]

Thank you Sandra and I’m sorry this reply is a bit delayed. I am getting ready for my brain radiation (will post about this separately) so I’ve been quite busy getting an MRI, COVID test, etc.

Regarding your question whether my oncologist officially knows it’s Cachexia, the answer is no. I last saw my oncologist on August 3 and previous to that, July 14. On my July 14th visit, his secretary weighed me and I was 43. 5 kilos. She made a comment that I had lost weight since my last recorded weight was 45 kilos. On August 3, my oncologist gave my orders for my Fulvestrant injection (but I wasn’t weighed at his clinic)and when the nurse weighed me at the OPD, she mentioned that my weight was 41.5 kilos. Since this was at the OPD, I don’t think she was able to mention this to the secretary of my oncologist. However, just prior to my Faslodex injection, I noticed in the mirror in the comfort room that my buttocks had lost muscle and looked almost flat as pancakes! Fast forward to August 13 when I had my MRI and the nurse weighed me and I was 40. 5 kilos. Since this was done at the MRI and not at my oncologist’s clinic, I doubt they would have informed him. Bear in mind that the Philippines is still under strict lockdown so I don’t see my oncologist regularly. Last time we had a teleconsult, it was about my brain Mets and I didn’t yet realize if my weight loss was serious or not. So yes, part of my observation was from Dr. Google.

But thank you for explaining it further. I am now taking Prosure that was prescribed to me but officially, I don’t know if it is Cachexia though I do have loss of muscle mass and wasting (notably on my right arm where I experience numbness and tingling.)

Maria

[Duffles in reply to MyMiracle13]

I lost over 20 pounds in less than two months. From 108 to under 85 ! My oncologist kept encouraging me to eat, drink protein shakes...but I lost all my weight and muscles. I couldn’t take meds for it due to two spine surgeries and a femur rod! Had to stop Ibrance after one dose, then Xeloda off and on because of the surgeries. I brought up the cachexia and she agreed, saying I have to find a chemo treatment that worked...turns out my tumor became triple negative! So now on Abraxane and keeping my fingers crossed! Taking Glutamine for neuropathy...and read helps with this type of weight loss, so trying!

[MyMiracle13 in reply to Duffles]

So sorry that you are having trouble with your weight too. I am trying to ask my oncologist to find a lesion that can be biopsied so that we will know if my tumor receptor has changed. He said we should deal with the brain Mets first and after the radiation therapy, we will deal with the lung Mets. I’m still on hormone therapy now.

[Duffles in reply to MyMiracle13]

Good luck you you in this weird MBC life of trial and error (or so it seems to me😉) seriously, thanks for your thoughts!

[MyMiracle13 in reply to Duffles]

What kind of glutamine do you take? And does it help with the neuropathy?

[Duffles in reply to MyMiracle13]

I take L -glutamine powder. When I first had my stage 3 breast cancer about 17 years ago I took it through my intensive chemo treatments and only got a little neuropathy, so I asked my onc if ok. Not really prescribed but said wouldn’t hurt. Then I read about recent studies that said it is given to Aids patients or for anorexia so another reason I’m trying! I told her about that and she is going to look that up. It’s tasteless...I think 10 mg 3X day is suggested....hope it helps if you try!

[MyMiracle13 in reply to Duffles]

Thanks so much for this suggestion. I will ask my oncologist about it too. Will let you know how I get on.