Handling Eating Difficulties

deba · Regular Joined: 28 Feb 2006 Posts: 28

My dad has extensive small cell cancer with mets to the brain. He has had 3 rounds of carboplatin and etoposide and 10 rounds of whole brain radiation. He is continually losing weight at a rapid pace because he won't eat. He says he is hungry, but that everything tastes too bad to eat. We have tried everything we can think of - liquid supplements like Boost and Ensure he just spits out, we have tried ice cream with and without Boost added to it, he won't eat peanut butter, jello, puddings, soups, cereals, meats of any kind, breads, potatoes ......you name it, we have tried it. Can anybody think of ANYTHING we can do??? Has anyone else ever faced this problem of actually being hungry, but the patient just won't eat??? The doctors have given him appetite stimulators and also anti-nausea medicines to take 30 minutes before he tries to eat and he says they don't help. I'm beginning to think he may be intentionally starving himself. Any ideas or thoughs?????

hoosier · Regular Joined: 17 Oct 2005 Posts: 15

try baby food, I used it and it was the only thing that kept me going, tell your husband that he must force himself to eat or die. That is the bottom line, His body has to have noursihment to fight the disease. I also have been surviiving SCLC, and Lymphoma for 5 years. Attitude and noursishment are and abosolute positive. Ask your Dr. if your husband coult be put on steroids. They increase appetite, energy, and attitude. Good Luck to you...please keep posting.
Hoosier
paulamsmith@sbcglobal.net

deba · Regular Joined: 28 Feb 2006 Posts: 28

Hoosier,
Thanks for answering me. This is my Dad, who is 66. We will try baby food, but Dad has always had an extremely strong gag reflex and he just gags when anything is put in his mouth.

I can't believe you have had SCLC for 5 years!!! That is an awesome inspiration, and does give me some hope for better days for my Dad after chemo. His oncologist thinks he has less than 6 months or so because of his rapid weight loss, inability to eat, and we can't get his white blood count up at all.

hoosier · Regular Joined: 17 Oct 2005 Posts: 15

I WAS ABLE TO RAISE MY WHITE CELL COUNT THROUGH NATURAL HERBS, ONE THAT YOU MIGHT CONSIDER IS A BERRY CALLED GO JI BERRY. I HAVE INCLUDED THE ADDRESS FOR A COUPLE SOURCES...THIS MAY OR MAY NOT WORK FOR YOU FATHER, IF HE HAS A DELICATE STOMACH HE SHOULD GO EASY AT FIRST, 3 TO 5OZ PER DAY AT MOST. IF HE CAN NOT TOLERATE THE JUICE, THERE IS THE BERRY ITSELF, IT CAN BE GROUND IN POWDER AND SPREAD ON DIFFERENT FOODS THE BERRY IS CURRENTLY UNDER FDA SCURTINEY. IT IS THE STRONGEST ANTI-OXIDENT KNOWN AT THIS TIME. PLEASE READ UP ON IT AND WHAT IT HAS DONE FOR CANCER PATIENTS.
Al Smith

WWW.FREELIFE.COM JUICE
WWW.CAOH.COM RAW BERRY

I WILL PRAY FOR YOU AND YOUR FAMILY, FEEL FREE TO CONTACT ME DIRECTLY IF YOU NEED. MY E MAIL IS BELOW
paulamsmith@sbcglobal.net

sherri · Posted: Wed Mar 15, 2006 9:56 am Post subject: Re: Handling Eating Difficulties

Hi Deba,

My dad was recently put on something called Megace? (sp) I think its some type of hormone pregnant woman produce that gives food cravings. It is helping some, but its only been a few days. We try and give him ensure, a nutritional supplement drink twice a day, and we make puddings using it as well. One thing Im begining to sadly learn though is that we can't force our loved ones to eat. My dad has wasted away very quickly in the past two months. I understand.

My thoughts are with you and your family.
Keep strong!
Sherri

hoosier · Regular Joined: 17 Oct 2005 Posts: 15

have they tried steroids? They will definitley increase his appetitie. Of course ask your Dr first on wheather he can take it. Tell your dad that weight loss is the enemy now, not the cancer....the body has to have calories in order to recover. I would be more that happy to send you some raw Berries (free of course) Just give me an address and they will be on their way. you can also call me if you contact me directly through my email address. I feel safer giving personal info that way. I truly care about your situation, and your fathers...I am a grandpa x5.

deba · Regular Joined: 28 Feb 2006 Posts: 28

Sherri and Hoosier,
Thank you so much for your help and suggestions. Dad has been on Megace to increase appetite and Reglan to suppress nausea. Neither has helped much, but Dad seems to have lost the will to even try anything. He has been in the hospital for the last 3 days getting IV fluids because of severe dehydration. He has also taken 2 units of packed red blood cells. He feels absolutely terrible today, but is going home. I know that without eating, he is just going to be back in this shape really soon.

I have baby food at his house to try, so we will try that when he gets home. He won't drink the Boost or Ensure, but I'm sneaking it into everything we can!

Hoosier, Are you talking about GoJi berries??? I have some GoJi juice, but would the berries be better???

Sorry that I haven't gotten back with you all sooner, but I've been with Dad at the hospital, and then I was in the hospital ER for a stress induced migraine - my first migraine ever! This certainly is a stressful time!

winnymac · Posted: Sun Mar 19, 2006 4:09 am Post subject: RE: Handling Eating Difficulties

Deba,

My dad was diagnosed with non-small cell lung cancer in 10/04. He had chemo and radiation and was doing really well. Then in October of 2005, he had a seizure casued by a tumor that had mets to his brain. It has been a roller coaster ever since. He went into a nursing home from the hospital since he was unable to transfer on his own. He had brain radiation and got PT at the nursing home and at one point was walking again. However, about the time they tapered him off steriods, he got a flu bug and after that we couldn't get him to eat. He started staying in bed more and more and we tried everything to get him to eat and drink. We had so many doctor appts and calls to doctors that I have lost count. The cancer wasn't killing him any longer but he was starving and dehydrating. My sister is a dietician and this was the hardest on her, she tried everything she could think of. She did finally get him to drink some whipping cream, which was high calorie and liquid and sometimes a little soup or cereal but it was not enough to keep a child alive. He came home for about 2 weeks before the doctor put him back in the hospital for more tests and while there he got some much needed IV fluids. They didn't find anything and sent him home on hospice. I guess when you are 78 years old and not eating, they don't know much else to do with you. However, they started him back on a low dose steroid and low and behold, he started to eat again. After three months of him wasting away, they had the drug to get him to eat all along. I realize there are side effects but hey he was starving! We had tried megace, reglan, nausea meds, all to no avail. The not eating has been the hardest on the family of all the trials so far. It is hard to watch a loved one waste away and it seems voluntary. My family loves to eat so it was hard. However, this last week, he seems to be back to not eating much so not sure what that is all about. I am hoping it is temporary but we just take it a day at a time and try not to take it personally. My dad also said that food just didn't taste good and sometimes he wouldn't even try, he would just spit it out or refuse. He has always loved chocolate and can't handle it now. Sweets seem to be out, except some fruit. My sister and I equated it to a mental thing almost like anorexia. When he went back in the hospital the nurse said what can I get you to eat and he said, "I don't eat", like that was a part of him, it was scary. We still can't seem to get past the thought that if he would eat and drink really well, he would get strong and heal and better for at least awhile longer.
Sorry for this extremely long post but I really related to your story.

Linda

deba · Regular Joined: 28 Feb 2006 Posts: 28

Linda,
Your Dad's situation sounds just like my Dad's!!! Dad is home from the hospital where he received the IV fluids and blood. He has again gone back to eating nearly nothing. Like you said, it isn't enough to keep a child alive. I am a dental hygienist with nutritional training and also a teacher of a healthy eating program at church, and this is hard for me to watch too! I have racked my brain for things for him to try. I'm going to ask about the steroids, but I do know that this is a rough time on us all and that Dad doesn't have much time left. Thanks for your post - it helps so much to be able to relate to someone!

winnymac · Posted: Sun Mar 19, 2006 2:00 pm Post subject: RE: Handling Eating Difficulties

Deba,

I think one of the hardest things on my family was that the doctors kept saying they had no idea why he wouldn't eat, no medical reason. However, the more research we have done it does appear to be a problem for people with cancer. We feel like we lost 3 months that he could have had better quality of life and time to heal or repair. Since you know about nutrition, you realize how many things are affected by a lack of it. We kept thinking how can he make good decisions about his health when his brain has been radiated and now is lacking nutrition! We thought about a feeding tube at one point, not a permanent one but a nose tube to see if it would jump start his body and maybe his taste for food would return. However, doctors are very reluctant to use them unless it is a last minute life saving treatment. We didn't want that to be the only thing keeping him alive, we wanted it as a treatment to get him over this particular hurtle. However, by the time we came to this conclusion and he had agreed to try, it was to the point where if it didn't work like we had hoped, then taking it out might be a huge issue because it might be the only thing keeping him going, which he did not want, and the hospital doctor (not his doctor, she was on maternity leave) said, he would not do that to his dad.
The frustration factor with the doctors not being concerned enough about the eating issue until way too late and the frustration on the family of trying to find the one food he would eat (lettuce and cucumbers, zero calorie items! meats and carbs forget it.) was very very stressful. I can totally understand how you ended up with a migraine. Also, our dad got upset with us and tired of us asking, telling, pleading with him to eat and drink. We also wondered if he was intentionally starving himself. I mean if you know that you will die if you don't eat and it is just that eating is not real pleasant anymore, can't you force yourself? We struggled with that so much. Obviously, there is more to it than what we understand. Now that he is on hospice we are supposed to just keep him comfortable and not nag, still hard for us! Mom is 76 and in surprisingly good shape, however, we worry about her quite a bit too, it is a lot to go through.
I really think the steriods could be a help to your dad. Even the hospice nurse told us, oh yeah, they will make people eat like crazy. They also make them a little more alert, some of those anti naseau meds make them so sleepy all the time that it is hard to have quality time with them.
Take care,
Linda

deba · Regular Joined: 28 Feb 2006 Posts: 28

Linda,
You are my shining lifesaver! I feel like you have been through exactly what my brother and I are going through. At times we too have wondered if Dad is intentionally starving himself, but then it almost seems like that would take too much thinking on his part given the fact that he has mets to the brain and has had whole brain radiation. He too gets frustrated with us asking, pleading, etc. There are times when he is still able to stay alone for a few days, but I call all the time asking what he has eaten, etc. and I know he gets so tired of me asking that he just tells me what he thinks I want to hear!! I'm definitely going to ask about the steriods just to help improve his quality of life and get some energy for him. I feel for you and anyone else having to go through cancer of a loved one. Thanks so much for helping me to know that we are not the only people going through this eating situation!

winnymac · Posted: Mon Mar 20, 2006 1:10 am Post subject: Re: Handling Eating Difficulties

Deba,

I feel the same way about you! You have no idea how re-assuring it was to read your post. I feel for you that you have to go through all this also, but yet it was good to know that dad is not the only one.
Does your dad live alone then? That must be difficult for all of you.
My dad too, would exaggerate the amount he was eating each day. We started tracking it when we could and then realized it was much less. It has been easier to track now that he is home, the nursing home was not helpful with that at all.
My sister and I live very close to my parent's home and dad is now pretty much bedridden although we still have hope that he will start to get up in his chair again, with our assistance. We take turns each evening trying to help out as best we can. I have no children but my sister has two so it can be challenging at times.
The liquids are very important too. I couldn't believe how dry dad's skin and mouth got when he wasn't getting enough fluids. So, something else to watch for, but yet unable to really enforce. Sad

Keep me posted and hang in there,
Linda

deba · Regular Joined: 28 Feb 2006 Posts: 28

Linda,
Yes, my Dad lives alone and I live 3 hours from him and my brother lives 6 hours from him. We take turns each week traveling to stay with him. It is becoming a very hard financial burden on both of us because we aren't working much and have travel expenses. We do have a half sister, but she is just 16 and lives several states away. Her mother and my Dad have been divorced for 4 years, but since their child is so young, he still has to have quite a bit of contact with the child's mother. His ex-wife is very mean to my Dad and has made this illness difficult for us all.

I'm so glad that you have your Mom to help and be with you and your sister. I truly do feel for you. My step-dad died 2 years ago with CJD which is Creutzfeld Jacob Disease. It is a very, very rare disease that is similiar to "mad cow" in cows. It was a horrible disease to go through, but having my Mom to help with him made a big difference for me, and being close to them (5 minutes away) made an even bigger difference.

Hang in there and keep me posted on how your Dad is doing. You can email me personally also. I check my emails daily and I would love to keep up with how your dad is progressing as it sounds very much like we are going through the same thing.

Deb

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