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Sometimes I feel her slipping away

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

Over the last two weeks my mom has lost 6 lbs. She has now gone from 135 lbs to 88 lbs. The doctors say don't get caught up in the numbers such as CA 125 levels (Mom's lowest is 3,300) but it is so hard not too.
The doctors changed her meds two weeks ago and other then the acid reflux medication i don't feel like they are making her any better possibly worse.
I keep telling mom she has to fuel the machine by eating even when she doesn't want to but she isn't and i feel myself getting annoyed. I want to ask her if she wants to die then just keep doing what you are doing but i know that won't help the situation.
The doctor has said on mom's last two visits that her stomach is smaller and softer. I am assuming this is a good thing. Lately, I just keep hearing the doctor say she only has a year to eighteen months which is what we were told September 4th. Wow, six months of that time has gone already......
Thankfully Mom has had zero pain of discomfort. I hope the clinical trial is making a difference but I guess we won't know for sure until her March 8th CT scan.
Thanks for listening.
Kelly

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Sorry to hear that your mom is not doing as well as she might be doing. I was diagnosed with ovarian cancer (8/10) and have experienced the same problem that you mother has: anorexia or no appetite. Maybe it will help you deal with her if you have some more information about this symptom.

There is something that the body makes called "tumor necrosis factor" that helps the body to destroy the cancer AND it also causes anorexia. There is also something that the cancer makes that can cause the person to waste away even if they do have a good appetite and eat a good diet.

Something that helped me improve my appetite was using medical marijuana--this is also available on prescription (called Marinol). I never got high from using it but I made me hungry and the food tasted GREAT!

Because I had a bad case of C. diff (a hospital-acquired intestinal infection) and the cancer was very aggressive, my physicial prescribed IV feedings of amino acid and lipid (pre-digested protein & fat). There are no carbohydrates in the feeding because carbs are easy to digest. Even though I have a good appetite now, I am still having the IV feedings done 3 times/week and I think it is making a difference (I stopped losing weight). I am almost at the end of my treatment plan and the fluid has been gone from my belly for 3 months now.

I get the IV feedings at home through an infusion port in my chest. The insurance is paying for RNs to come to my house and change the IV needle once/week. The feedings have to be given over 8 hours and I hook up the feedings myself. The IV fluid is pumped in and I have a back pack to carry the solution and the pump so I can go out to shop, eat, or whatever.

I don't know if you can find a doctor who will agree with this treatment for your mother but it is worth a try. Good luck.

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

My mom is on cesmet which is a form of medicinal marijuana but it hasn't done anything for her except made her tired. Mom was on an iv drip for two months but that has been stopped since she is drinking more.
My mom had surgery Sept 4th (unsuccessful due to the location of the tumour) and they drained 2 litres of fluid from her stomach then and her belly has not grown at all since. I find this a little odd.
On Thursday's appointment the doctor did tell mom that her belly felt softer and smaller. I am praying this is a good sign.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I hope so too Kelly.

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