1 (edited by positivity Wed, 12 Jul 2017 08:35:11)

Topic: Tough! Giving up!

Hello,
All of us as patients and caregivers have experience the times of toughness and not having any options available.
I am in that state with two serious medical conditions and really no cure or treatment.
It's at a point when the caretaker has done everything to help by attending appointments, doing research, getting opinions, helping with diet and emotions and support.  I am at the point where it's day to day for better or worse.  I can't do anything else and nature takes its course. 

My mom has lost more weight and hardly eats, and complains why she loses weight. 
Has anyone tried an appetite stimulant or its pointless with this condition?  This is also without chemo and radiation which reduces appetite.  Obviously people with CC with or without treatment just lose weight and their appetite.  I don't know what in the bile duct area controls appetite which doesn't make sense.  It's not in the stomach. Or if the stents give the patient a full feeling or somehow the restriction of the bile ducts reduces the appetite.

Anyway, how have you dealt with appetite changes?  Does the stents have anything to do with this?  This weight drop and appetite change started with the first stents and continued.  She didn't have it before the stents or ERCP and had a normal weight and appetite.

Re: Tough! Giving up!

All I can do is tell you what I did for Teddy. CC has a mind of it's own as you have learned. A patient cannot be made to eat. Sometimes they are just too tired and other times "something" else seems to take over and says...do not eat! As care givers for loved ones this is one of the hardest things to comprehend.
I resorted to comfort foods like pasta, mac & cheese, homemade soups (hard to resist), eggs and etc. I  gave Teddy very small portions. When he would see a plate full of food he could not eat as he would choke up.  Then when Hospice started they recommended a Nutrient shake. We tried several and ended up with Carnation Instant Breakfast-vanilla- and I would blend in a banana. This can take the place of a meal or have it with a meal and even 3 X a day. It has all the needed nutrients and he loved it.
You are also at a point where you have to be kinder to yourself. We all get there. I found  it therapeutic to get in the car and drive around my neighborhood for about 20 minutes and I would put the "MaMa MIA" CD in and sing LOUD until I thought my throat would crack. Know what? I went home after the 20 minutes and was able to resume what I needed to do. I am still amazed I was not arrested for singing so loud!
Teddy had 3 stents going on and they were never considered to have anything to do with food unless they were clogged or had an infection. Since Mom has 2 serious conditions it may not be just the CC. I am wondering if the ONC has suggested Hospice. You know they will come out for a year and possibly you and your Mom could take advantage of what they offer.
I hate to disillusion you but none of us are super heroes. Comes a time we need some extra help too. I know you are a loving and devoted daughter  but you also need to conserve yourself for what may come. Sad but true. And BTW no matter how Mom may talk and feel she DOES know all you are doing for her!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Tough! Giving up!

Hello Lainy,
Great to see you again on this board and I appreciate your experience and advice.  We are at the palliative care stage and once we approach hospice, hopefully I can set it up at home.  At least we have ruled out stents which are an unfortunate undertaking forever.  I have accepted this nasty condition and glad many people show up to share and get this into the light of researchers.  I will continue to offer support and recognize there is a limit what can be offered.

Thank you.

Re: Tough! Giving up!

positivity.....Appetite loss is common among cancer patients, and can be directly caused by cancer, particularly cancers of the gastrointestinal tract like stomach and pancreatic cancers.  Have you considered consulting wih a Dietitian?  Also, who is your Mom's primary care physician, who is in charge of her care?    Is she depressed?  Are there certain foods she can be enticed with?  What happens if she eats foods not on the allowable list due to her underlying disease? Does your Mom have access to a palliative care team? Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

It's very difficult to regain weight when on a downward spiral and eventually, no matter how hard we try, cachexia (wasting syndrome) may set in.  When that happens nothing helps with weight gain,  food simply becomes the fuel for cancer growth.  http://www.cancercachexia.com/what-is-cancer-cachexia
I don't have the answer to what is causing your Mom's lack of apetitite, but have you spoken with her?  What does your Mom want? Does she want to continue to fight or is she doing it for you only?
I thinks it's really important to have these questions answered, because without a common goal neither of you will obtain positive results. 

Realize that caregiving is enormouly taxing on the individual not only emotionally but physically as well. Be kind to yourself. We want to have a definite answer to our questions, but the reality is that too many things are not explainable and the answer may be floating around somewhere in the Universe.  That's when our  focus shifts to symptom control.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Tough! Giving up!

Oh dear Positivity, I am sorry your mother is not doing well, your presence here has been huge and you have a caring, thoughtful way of approaching every challenge, Kudos to you. The human appetite is a delicate, yet normally automatic mechanism, if you study it there are many communications in the GI tract that use hormones and amino acids and it is complex. My appetite is still abnormal almost 11 and a half years past surgery, I can either not be hungry for the day or become incredibly hungry at the drop of a hat. Things that stimulate my appetite, wonderful smells of food cooking, cannabis, preparing a dish, especially a favorite dish, is stimulating. Also things that digest easy like soup is appealing usually. I have problems on and of with an appetite 'swing' of too little or too much appetite, My weight can fall quickly so I eat as much as I can, I don't own a scale. I am weighed at dr. appointments and that is it. I try to pig out before appointments so there are no red flags. I know how you feel, it is hard to be powerless, I have offered the things that help me,yet we are all different,hopefully something will help, remain positive....we have loved your presence here and just be strong in this difficult time, try the smell of a roast chicken , that usually gets me, I wish you the best, Pat

Senescence is a beautiful thing....

Re: Tough! Giving up!

I have been monitoring this site for quite some time, but have not done a "formal" introduction yet (but will soon), BUT, have you considered a feeding tube?

By "accident" (read "know it all" doctor who assumed I had "all this cancer in my stomach"- NOT!) while I was getting a metal bile duct stent put in, he also put a metal, non-removable stent in my duodenum, which created a blockage, where my stomach didn't empty. I went from having no problems eating, to losing 15lbs in a little over 2 months (I only weighed 105 to start). I simply could not eat enough, and my ONC said 5 Ensures a day (Oh good, sugar and corn syrup), would at least keep my weight up, but even liquids couldn't get through. I was on Cis/Gem chemo at the time and was spending 75% of my time in bed. When I hit 89 lbs, I knew I had to do something. I asked about a feeding tube. My brother is a Dr, and he said YES! My ONC, said NO! worse mistake ever (not sure why), anyway since getting it, I have gained back the weight, plus. It was the best thing I ever did, (even though it is kind of a pain), I get 1400 calories  of GOOD nutrition everyday (Nestles "Compleat", which is REAL food).

The key is to get a "jejunal" tube that bypasses the stomach and puts the food directly into the small intestine. This way you CAN still eat by mouth (I eat anywhere from 300-600 calories a day depending on nausea, or lack of appetite. The "feeding" takes place starting about 6:00pm and runs overnight. Less food = less time, and if your "motility" (speed of processing food) is better than mine, you can probably do it faster.

I am doing very well with my stage 4, extrahap CCA. It's been a year, and my scans still don't show any progression (still too small to show up??), BUT part of me thinks good nutrition has to be helping. How can you fight a cold, much less cancer, if you don't eat well??

For me, its major surgery to remove that stent, basically a Whipple, so I don't know that I will ever be able to eat normal again. BUT for the rest of you, a feeding tube could be a good way to fight this disease while maintaining your strength and energy. My insurance does cover it.

I have learned a lot about "motility" the past seven months. A lot of things slow down your digestive process, which effects your appetite. Ironically, the anti-nausea pills they give you? Are the WORST. Better to get your anti-nausea drugs by IV with your chemo, as that doesn't effect motility. Contrast drugs given prior to CT scans will slow your motility. Mirolax or similar stimulants can help speed things up which will also increase your appetite.

I'm amazed that this is not something that is even mentioned by ONC's, I first heard about it from a gastro dr, who gave me a quick course.

Anyway, this post is way too long, Good Luck to you.

Re: Tough! Giving up!

Thanks so much for everyone's response.  The doctors have engrained in her mind about small portions of meals throughout the day, so that is set for her to be careful and not overeat.  I don't know if it's her actual appetite saying no more or her fear of feeling sick or getting a stomach ache to stop eating.  We worked on a healthy diet to increase her immunity and health, but it is to a point of allowing her cravings dictate what to eat, so she can just eat.  So, if she wants the cheese with white flour bread, so be it.  I was afraid that dairy and  meat aggravates the GI system and had her eliminate these foods.  Now it is what will make her eat and still eat healthy in small quantities throughout day.  It ends up being a few bites here and there.

Marion,
I am aware of cachexia and if it gets close to that, perhaps Molly's suggestion of feeding tube, which would not be something my mom would  not want. Yes, she does get emotional and cries.  She wants to get better, but it's that feeling of helplessness.

Hercules,
Thank you! Again, amazing where you are today!  I will entice her with food cravings she loves and not be concerned about, if it is healthy enough.  I was hoping to maintain a certain weight after the first initial weight loss, but results show more weight loss in one month!  My goal is to be realistic and try to get back 5 pounds, great if more! 

Molly,
Thanks!  I questioned the stents because that is when my mom had the first drastic weight loss.  She was of normal weight beforehand, so that's why I questioned is it the CC or stents?  She had CC almost three months before stents (who knows maybe more), but it just wasn't official as in a pathology report.  One of the stents was in your duodenum which can explain your weight loss.  I get the side effects of cancer, but just questioned the stents.

Thanks again everyone!

Re: Tough! Giving up!

Just to get a little more info out there....the feeding tube isn't as bad as it sounds. I have a horse, a dog, cats, property. I shovel manure, lift hay bales, walk the dog, ride, mow, shop, clean, whatever during the day. About the only thing I can't do is swim.

Once I connect in the evening, there is a battery pack, so I can go visit friends, or sit outside or whatever as long as I carry the battery and the formula bag.  I go from 6pm to 6am, but you could do 8 to 8 or 9 to 9, whatever works best for your schedule. I get a "food" delivery, once a month.

It is a overnight hospital stay to get it, and after that they change it every 3 mths, but its done as an outpatient, and takes about 20 minutes.

It does make noise at night (a little "whirling" noise from the pump). I wore earplugs for a while, but now I'm used to it (and the cisplatin damaged my hearing some).

Do I wish I didn't need this? Absolutely! But I really didn't have a choice, and it has allowed me to regain weight, muscle mass, strength, and helps keep my energy level up. I still have fatigue from the chemo, but I think its more mental than physical (chemo brain). And I do believe it is helping to keep my body in much better shape to fight this fight.

Re: Tough! Giving up!

Thanks Molly for sharing more details.   I wondered how this worked, if it is a device or something you have to carry throughout day.  It makes it more convenient since it's a device that can be activated only at night while asleep.  I can definitely consider sometime in the future.  All the best for your journey, and continue improving.

Re: Tough! Giving up!

positivity....it's really important to know why your Mom is fearful of eating.  Has she ever vomited due to overeating and if so,  how much food had she consumed?  Abdominal pain - is it caused by a certain type of food (carb's can be difficult to digest as is meat).  Does she have regular bowel movements? 
Have you discussed with her physician the use of stool softeners? 
Inactivity - is your Mom moving around and especially following her meal intake?
Years ago I attended a seminar on sluggish bowels treatments. In severe cases patients were advised eating meals while standing up. 

The more you are able to identify the more answers will come your way.

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Tough! Giving up!

Marions, Thank you for the very informative link. I have never heard of cachexia. Very interesting.

Positivity, I so hope you find something that helps. I do remember salty stuff seemed to go down the best, which may explain the cheese and bread (yes, I did that), and mac and cheese. I also drank a lot of apple juice with salt in it to cut the sweetness.  I've been following this site for a long time. You are very good at this, you will find something.