Sister Losing Determination?

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Sister Losing Determination?

by Tracy06 on Tue Apr 28, 2009 12:00 AM

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Hi All-  I have posted on here a few times about my younger sister battling stomach cancer.

She went into the hospital on 3/1 (day before she was to start a new regimen) with a bowel obstruction and had part of her colon removed and now has an ileostomy. Unfortunately, she was at the hospital closet to where we live and her oncologist doesn't have privileges there so he was not able to oversee her care. 

During her stay in the hospital, her kidneys almost shut down and they had to put tubes directly into her kidneys to drain the urine out into bags that are attached. She then ended up with a small bowel obstruction (took the docs 2 days to decide... yes, no, yes).  They put an NG tube in and were hoping it would decompress the obstruction and it would pass. She spent about 27 days in that hospital.  They called every specialist in for everything and were not the least bit concerned that she had cancer.  As a matter of fact, we were told their oncologist disagreed with the treatment her oncologist was giving as it was "too aggressive".  I don't know about you but I'd want an aggressive oncologist if I'm battling for my life.  She barely ate for this whole time.  The surgeon bruntly told her with the extent of her disease she was not curable. Pissed me off as who is HE to make that call.

We finally moved her to the hospital where her oncologist has privileges once we realized that the other docs weren't going to do anything.  Once at the other hospital, they actively worked to resolved her small bowel obstruction and were successful. They also started her on IV nutrition.  Thank God.  Her bile duct became obstructed and she ended up having a biliary tube placed directly into her liver to drain to a bag (once again) outside her body.  The oncologist started her on chemo in the hospital and told her he'd be as aggressive as he could as long as it wasn't hurting her.  He did move her to Stage IV though as her time in the hospitals allowed her cancer to spread. 

She ended up staying in the hospitals a total of 50 days and was just released a week ago.  She is at home getting IV nutrition at night.  She is on chemo as well.  Unfortunately, it is making her nauseated and she is having dry heaves come in waves.  Her legs are so swollen from all the fluids and the fact that she was malnourished. Hopefully, that will resolve but she is not eating hardly at all. 

It seems that it has been bad news after bad news for her. First all the hospital stuff, ileostomy, nephrostomies, etc..  We tested her tumor against some chemo drugs and all were non-responsive except for one that was barely responsive.  However, it wasn't a test of all drus or drug combinations. We also did a test to see if her tumor was HER2 positive and it wasn't.  One good thing is that it did test KRAS for wild type which means she should respond to Erbitux.

I am so worried about her. I know she feels awful. Oncologist says this is her low point (counts and all) from chemo.  She is getting 2 units of blood today. She seems really down in the dumps and I am afraid she is losing her determination and fight and I don't know how to encourage her.   She has GOT to eat but we can't force her so what do I do?  Her circulating tumor cells were at 140 before she began treatment again and are now down in the 80s so that is positive. (anything 5+ is not good).

Any ideas... suggestions... how do you cope seeing your loved one like this? How do we get her to eat?  We've tried all the stuff... small meals, soft foods, shakes, etc...  she has no interest usually.

Tracy 

 

 

RE: Sister Losing Determination?

by shanda39 on Wed Apr 29, 2009 12:00 AM

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Hi Tracy,

 I can totally relate as can everyone on this board. My dad has stage 4 stomach cancer and they told my mom it is inoperable, my father is also getting alot of blood almost everyday it seems like. 4 pints to be exact because his tumor is bleeding and they can't get it to stop.

 

He also has severe hiccups that makes him out of breath very fast. I don't know what you can do for your sister other than let her know that she has alot to live for. I don't know about you but I believe that god can work miracles because I have seen him do it with my own eyes. Just like you said who are the doctors to tell you that? they have no idea what god can do that is how I feel. This disease can be beaten it can, I imagine that it is only natural for your sister to be feeling the way she is. Afterall, it is her going through this. My grandmother died on monday from Liver cancer so I completely understand what you are going through my supervisor asked me today is I have any good news? I said no, not today.

 

I live in Maryland and my family is in Illinois so it is really hard to be so far. I'm going there on friday for my grandmother's funeral and I will spend some time with my dad. Just pray Tracy that your sister will find the resolve she needs to fight this awful, awful disease. That's what I'm doing praying.

 

Shanda     

Nutrition Formulas

by Tham on Tue May 05, 2009 12:00 AM

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I would suggest giving your sister Peptamen AF,
which we have ordered for a lung cancer patient
friend in another forum.

The reason I chose Peptamen AF is because it is
elemental nutrition in peptide form (hence the high
cost) for very easy digestion/absorption, a good
source of energy from medium chain triglycerides,
2 grams of fish oil to help him fight the cancer
cachexia (wasting) as well as fiber from FOS to help
with constipation.

Most importantly, it is a complete standalone food with a
full range of nutrients.

This is the cheapest source I found on the net.

http://www.allegromedical.com/dietary-supplements-c522/pepta


The second choice is Prosure by Abbott. Half the
protein is also in hydrolyzed peptide form, but this
is from casein rather than the whey in Peptamen AF.
It also has fish oil, but only 16% MCTs compared to
50% for Peptamen AF. You can find Prosure in
pharmacies. It's about half the cost of Peptamen AF.
It is a low fat formula, though, to improve digestion.

Another good elemental nutrition option is an amino acid-
based formula such as Vivonex TEN or Nestle FAA, but
these sometimes cause diarrhea. They are easily digestible
like peptide formulas.

http://www.allegromedical.com/dietary-supplements-c522/vivon

http://www.greatmedicalsupplies.com/supplybrand~enteral-supp






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