Topic: Articles on cachexia and nutrition: SENSITIVE

All,

I am posting links to some articles on cachexia and nutrition in cancer, as this is so very common in certain types of cancers, especially cholangiocarcinoma.

http://ascopubs.org/doi/full/10.1200/JOP.2016.016832

https://www.ncbi.nlm.nih.gov/pubmed/23354431

http://www.tandfonline.com/doi/abs/10.1 … ode=hnuc20

https://www.cancer.org/treatment/surviv … tment.html

If anyone would like the actual articles, I can email them you via the foundation. 

-Karen

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Articles on cachexia and nutrition: SENSITIVE

Thanks so much for these articles.  It's important for patients to know this information after the shock of diagnosis and sometimes we are so involved in the treatment that these side effects are overlooked.  Good to me informative, as this is the stage I am going through right now, but was aware of it.   It's tough, and you would think medical research can treat this symptom.

Re: Articles on cachexia and nutrition: SENSITIVE

Karen,

Thank you for this list. Keeping nutrition up can be difficult, but I would think oncologist would know what to look for and be aware of this and be looking for it? I'm assuming they do not.

Positivity,

What symptoms cause you to think this is the case for your mother? I am trying to keep an eye out and learn what I can for my mil and her case.

Thanks for your input.

Re: Articles on cachexia and nutrition: SENSITIVE

Hello Hopeseeker,
It is the rapid weight loss as the case with most individuals who get CC.  Overall since diagnosis she has lost 35 pounds and one doctor mentioned she cannot afford to lose anymore weight and for her to eat what she wants. Obviously doctors are not skilled or trained in nutrition and I feel if they have a view that a patient has a poor prognosis why bother with nutrition when the goal is to keep them alive.  As awful as this may sound.
I am always grateful that she has an appetite.  She has lost a lot of muscle.  The last weight loss was 10 pounds in two months!  More rapid weight loss the weaker the body to fight infections.  As you may know this is another issue with CC, especially if the person has stents. I feel the stents are just as dangerous as the CC, so it seems no matter what there is something.  Possibly have her eat what she wants in addition to some nutritious foods.  Try smoothies or boxed nutritious drinks, although doctors always say Ensure, I get a plant based chocolate or vanilla drink.  How is your MILs appetite? 
This is also a result of no chemo or radiation treatment.  People assume it's the treatment causing the appetite and weight changes which is a side effect, but can happen even without treatment.

Re: Articles on cachexia and nutrition: SENSITIVE

A few other links here as well from the UK -

http://www.cancerresearchuk.org/about-c … t-problems

http://www.cancerresearchuk.org/about-c … s/research

http://www.macmillan.org.uk/aboutus/hea … ancer.aspx

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Articles on cachexia and nutrition: SENSITIVE

Positivity,

I'm not sure how much weight my MIL has lost since diagnosis, but I'm going to try to find out. I know it's been a lot, and I would say 25-35lbs easily. She does have 2 stents also. Hard to keep up with everything since we live about 2 hours away.

I think that is right about the drs. They treat with chemo and not so much nutrition. My MIL's oncologist nurse was very helpful on the phone though and suggested some things. Problem is my MILs tastes have changed and she no longer like chocolate (which she used to love), she has never been a fan of vanilla and dairy give her gas, so we've given her a smoothie recipe for her sister to make for her and she likes that.

We bought her all the smoothie supplies so she could have them often. She seems to have early satiety also. Eating one piece of bacon, a tiny bit of eggs and 3 or 4 bites of a biscuit for instance. As long as she's eating though, that's good. She had stopped eating for about a week due to constipation, bloating and gas a week or so ago. She seems to have made it past that with just a little bloating here and there, I'm sure depending on what she eats. She does have an appetite, but she may doesn't eat very much.

I noticed at our last visit with her that the skin on her forearms just sort of hangs. I don't know how to describe it, but it's like she's lost so much weight (in her arms even) that her skin is sagging. She was wearing a house dress/moo-moo type thing for comfort (she can't stand to wear things that are up against her skin such a bra if she doesn't have to) It was odd to me and part of why I am looking for nutrition and supplement calories for her.

My MIL is now on Xeloda and we hope this treatment will be easier on her then the last chemo which was infusions she was getting. Hope her appetite increases and she can keep the constipation and bloating under control.

Thank you all for your input. I am glad I found this site to get info and vent when I need too.

Re: Articles on cachexia and nutrition: SENSITIVE

Hi Hopeseeker,

Sorry to hear about your MIL's weight loss and unfortunately this is quite common. I have another link here that you both might find useful and hopefully get some ideas as to extra things she could try with regards to nutritional supplements and help.

http://www.macmillan.org.uk/information … eight-loss

There are quite a lot of ideas on this page and you can click on the links within the page for more info etc. Macmillan are one of the major cancer support organisations here in the UK so no need to worry about where the info is coming from, just in case you were!

I would also add that yes, as long as your mum is eating then that is a good thing and if need be then eat smaller amounts more often. Also, eating things that are more easily digestable and broken down would also help.

My best to you and your MIL,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Articles on cachexia and nutrition: SENSITIVE

Another link here as well from CRUK -

http://www.cancerresearchuk.org/about-c … -on-weight

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Articles on cachexia and nutrition: SENSITIVE

Gavin,

Thank you for the links. I read a little of them and will go back and get more info to add to our arsenal of tips and ways to fight this.  My MIL isn't too keen on dairy but maybe some milk substitutes that are higher in fat like coconut milk or something?

We will keep pressing on and wish for the best!!

Hopeseeker

Re: Articles on cachexia and nutrition: SENSITIVE

Hopeseeker,

If looking for a mik substitute you could try almond milk. Rich went to our Chiro who does nutrition and supplements and made a smoothie recipe for him and it uses almond milk in it and he like its. He also uses it just on cereal because it is low in phosphates which he has to watch on the clinical trial that he is on.

As for gas pains have you tried something like Gas-X or Bean-o, I know for Rich those have worked too.

So far with Rich we haven't had a weight loss problem the smoothie he drinks does have protein powder in it and the supplements he takes have been working. I know when my mom had cancer it was a fight to keep the weight on her too.I wish you the best.

Kim

Re: Articles on cachexia and nutrition: SENSITIVE

Hi Hopeseeker,

Hope the links help. This one inside the Macmillan link has info about juice based drinks that you can get and maybe they would be okay instead of milk ones.

http://www.macmillan.org.uk/information … html#13787

My mum also has to take drinks to help keep her weight up but she preferred the milk based shakes like Ensure over the juice ones.  Hope some of the info helps and you can get some help for your MIL with this.

Best wishes,

gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Articles on cachexia and nutrition: SENSITIVE

Kim,
It seems she has been able to handle regular milk again as long as she is going to the bathroom. I think the switch from Gemzar/oxiplatin has been a very good change. I think it was too hard on her system, but Xeloda seems to be good for now.

Gavin,
Thank you for the links and input. She seems to be eating better and small amounts through the day.  Her sister is putting a yogurt in her smoothies and I know the extra protein and calories in those will help too. 

I am not sure she's eating enough calories, but I know she's eating and hungry so that is good. She may be able to increase her meals as she gains more strength? Fingers crossed that she is on the upward swing, and she won't have lost more weight at her next drs appointment!!

Thank you all for the great resources and info