Decision on Feeding tube-help please

deba · Regular Joined: 28 Feb 2006 Posts: 28

Has anyone had experience with a feeding tube for someone with lung cancer? As previously posted under "Handling Eating Difficulties", my dad is not eating at all. 5 days ago he was admitted to the hospital for IV fluids because of dehydration and also for a blood transfusion. He is already dehydrated again. He has to have lasix to pull fluid off of his lungs and heart because of congestive heart failure, and he is unable to eat because nothing tastes right and makes him nauseaus to eat it. He is only ingesting about 8-12 oz. of fluid a day, so he is quickly getting dehydrated. After a call to his oncologist, he is to see him for an evaluation in 2 days and he told us to be thinking on if we wanted to insert a feeding tube or not. Dad has 1 chemo treatment left (etoposide and carboplatin), he has mets to the brain which he has received radiation for. I know his time is very limited, but Dad does not accept that. I hate to see him literally starve to death. Any advice?????

Michie · Regular Joined: 20 Mar 2006 Posts: 12

Feeding Tubes just prolong a persons life. Is your father able to tell you what he wants? How is the quality of his life?

I would put it in perspective of your father, and what he wants.

deba · Regular Joined: 28 Feb 2006 Posts: 28

That is the problem, really. If it were my decision I probably would not have it done. Dad is mentally capable of making this decision. He is up and going and still able to do most things - he just doesn't do anything because of lack of energy from dehydration and lack of nutrition. He just CAN'T eat. He wants to and is hungry, but the cancer and chemo have just made everything sickening to him to eat. I know feeding tubes just prolong life - and possibly suffering - but he knows he is literally starving to death right now. No good solutions, I'm afraid.

Michie · Regular Joined: 20 Mar 2006 Posts: 12

well i know with my soon to be father in law, he is/was having a hard time eating any kind of meat... but seafood tasted just fine.

I dont know what its called-- but there is "something" (not sure if its a pill , an injection, or what) but it helps with all the side effects of chemo. My fiances father took it before his first round of chemo and hasn't been sick at all. May mention it to your fathers doc, unless he was/is taking it as well. Of course, the med didnt' help with the taste of foods- but at least food wasn't nauseating to him.

So is the feeding tube going to be your fathers decision then? Or just something that the doc suggested? They can be put in where they aren't permanant - if that is what you are worried about. They can also do a nasal feeding tube if surgery is what worries you. There are many types of feeding tubes actually- just need to discuss your worries with the doctor.

marcosis

Hey Deb,
I have been wondering how things were going with your father. Apparently, not so good. I just felt like I would put in my 2 cents. When my Dad was diagnosed the thing I prayed for most was that he would not have to suffer. I have to say even given the horrible circumstances, compared to stories I have heard my prayers were answered. Sure, it was hard for him at the end but, his pain was controllable. I guess my point is... after a certain point the disease takes away the body and if it were up to me I would never prolong the pain I watched my dad go through. However, when he wanted to fight, I fought with him. I am sorry you are having to face this, it makes me sad. Know that my prayers are with you and your dad. The love lives on forever! I hope that made sense to you, it almost did to me.

deba · Regular Joined: 28 Feb 2006 Posts: 28

Marc,
Your post did make sense to me. Believe me, I certainly don't want to prolong any suffering. However, we have been fortunate so far in that Dad is in no pain what so ever. His only real problem is that he absolutely cannot ingest enough food to keep him alive.

We saw the oncologist yesterday. Dad was due his final round of chemo (carboplatin/etoposide) almost 2 weeks ago, but has been too frail to take it, even after a blood transfusion. In January he was nearly 170 pounds and now he is at 137. The oncologist said he cannot take any more chemo that he has been taking. He said IF Dad can get stronger through more nutrition he could possibly take chemo of topetecan. Dad had another MRI of the brain yesterday to see if any brain tumors were causing his inability to eat. We just got those results and the doctor said there was a dramatic decrease in his initial brain tumors from January, but that there were still some tumors present. He did not think, however, that they were causing the nausea and inability to eat.

Yesterday he put Dad on Marinol, which is made from marijuana, in hopes of quelling the nausea and stimulating his appetite. This is the last medication that we can try as we have tried all others. If this does not work, then Dad is going to have to make a decision on a feeding tube and whether or not to try more chemo.

It is a very difficult time. Although he is in no pain, he has no quality of life right now due to extreme weakness/fatigue/dehydration.

Thanks for your prayers and concerns!

Deb

frazierld · Posted: Sat Mar 25, 2006 6:36 am Post subject: Marinol?

Deba,
How did the Marinol work for your father? It worked wonders for my mom after they increased the original dose. We joked at what a pothead she was.
Lynne

deba · Regular Joined: 28 Feb 2006 Posts: 28

Lynne,
Dad has only had the Marinol since Thursday afternoon, so he has only taken 4 doses so far. I do believe that it might be helping, although there had been no huge breakthrough from it yet. But we are hopeful. What dose was you mom on? Dad is taking 5 mg before lunch and 5 mg before dinner. I read that the dose can go as high as 20 mg a day, but side effects are usually worse. We too have had a good laugh over dad being on pot! At least we can laugh about something!

Deb

frazierld · Posted: Sat Mar 25, 2006 8:07 am Post subject: Marinol

Deb,
My mom was on the full 20mg per day. 10mg before lunch and 10mg before dinner. She had terrible trouble eating as well. Everything tasted like metal, she said. The marinol helped. It gave her cravings--and I made lots of trips to McDonalds for vanilla milkshakes anytime she wanted one! She craved bread pudding, too--I had to learn to make that Smile

She started to eat much better during the last 2 months but for some reason she didn't gain any weight. She went from 185lbs to 130lbs during her sickness. At first, she didn't like the "stoned" feeling the Marinol gave her but she certainly got used to it! I hope your dad does well with the Marinol.
Lynne

frazierld · Posted: Sat Mar 25, 2006 8:15 am Post subject: Nausea

Deb,
One more thing. My mom was also sick because the chemo caused massive acid buildup in her stomach. Doctor had her on Protonix--which didn't work and was VERY expensive. We bought plain ol' Prilosec and it helped immensely. It took about 3 days to build up in her system but it really helped.
Lynne

Michie · Regular Joined: 20 Mar 2006 Posts: 12

So does Marinol help with the metal taste of foods? or just help to induce cravings so they'll eat regardless? My fiance's father can eat most seafood just fine, but red meats seem to have that metal taste to him.

frazierld

Hi Michie,
No, I don't think Marinol helps with the metal taste. It helped my mom immensely with nausea and stimulated her appetite (gave her the "munchies").
Unless you have great prescription coverage, Marinol is very expensive. My mom was sick before medicare paid for prescriptions but we filled out the paperwork for pharmacy assistance and the company sent the medicine to her for free every month.
Lynne

Michie · Regular Joined: 20 Mar 2006 Posts: 12

thanks Frazier. My fiance's father doesn't have a problem with appetite. He is taking or took some medication before the chemo that lessens the side effects. Just most foods have that metal taste- except sea food.

Thanks again!

deba · Regular Joined: 28 Feb 2006 Posts: 28

Lynne,

Sounds like my dad is experiencing exactly what your mom did. The marinol is starving him now!!! He is so hungry, but he still can't stand the taste of anything at all. He said everything tastes like he has a mouth full of metal, so he just doesn't eat it. I'm afraid that he is just more miserable now with being even hungrier than he was. He isn't craving anything yet at all. He also says that he doesn't feel any "stoned" effects from it, but sometimes he talks my leg off now! hee hee

Thanks for telling me about the prilosec. How did you know about the build up of stomach acid? Did your mom have indigestion, or some other symptom? Dad hasn't mentioned anything like that, but that could be a thought.

Deb

frazierld · Posted: Tue Mar 28, 2006 10:04 pm Post subject: Decision on Feeding Tube

Hi Deba,
I'm sorry it took so long to get back to you. I didn't realize you had replied. I hope your dad is doing a little better????
To help combat the metal taste my mom ate Mentos and lots of other mints. She said the peppermint Altoids were the best because they were really strong. She had them in the pockets of her bathrobes, on the end tables, in her nightstands. Nothing ever really got rid of the taste until she stopped the chemo. Maybe you could try the mints? They even have ginger flavored Altoids--which helped with nausea. There are also licorice flavored Altoids.
As far as the acid buildup, mom complained that her stomach burned and sometimes she had pain. She also threw up A LOT! The gastroenterologist(sp?) looked in her stomach with a scope and said she had lots of acid. Her oncologist said acid buildup could be a side effect of chemo. Mom also had some heartburn. The Protonix was $90 per month and didn't work at all and the Prilosec was $25 and worked wonders! Go figure.
Lynne

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