CancerCompass message board discussion started by bensisco on 5/3/2008 http://www.cancercompass.com/message-board/message/all,23705,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Good morning all. For those of you who are on a feeding tube or have a loved one on one, please tell me a little about the experience. Can you be too weak to go on the feeding tube? Is the stomach tube better or worse than the nasal tube? How long does the procedure take and is it very involved? How and when are feedings done and is the process very intrusive?My mother is about to be discharged from the hospital (Stage IV lung cancer metastasized to the spine at this point) and her doctor wants her to go on hospice. She never had a chance for a second opinion because her oncologist kept lying about her progress and then delaying her release from the hospital when we insisted on getting her to another hospital for a second opinion. Apparently, after he originally tried to get us to put her on hospice in February (which she personally declined), he decided to treat her hospital stay like she was on hospice and not do anything for her nutrition wise except Megace and an IV. They would bring her three meals per day, but she was so heavily medicated that she couldn’t stay awake and eat if she wanted to. So, she is at a point where she has zero interest in eating and is heavily medicated. If we coach and nag her, she might eat a bite of something a couple of times per day or she will eat an Ensure pudding. So, she is very weak. When she’s discharged we’re thinking of taking her to the emergency room of the local research hospital/comprehensive cancer center for a final desperate attempt at having someone else look at her.  Any advice would be appreciated.   bensisco Sat, 03 May 2008 00:00:00 GMT I am sorry to hear about your mother's illness.  I lost my husband to stage IV stomach cancer on February 22.  He did have a J tube which had to be inserted surgically; his malignant stricture prevented the doctors from inserting a G tube endoscopically.  He was so weak at that time that he really did not recover from the surgery.  In fact, the doctor questioned his having the tube inserted and made sure that is what he wanted.  He lasted about 8 days with it, declining all the while.  At that point, hospice came in and said the feeding tube was only prolonging the dying process, making it more difficult for his body to shut down.  I had them remove the feeding tube that day and he passed 13 hours later.  It's a nightmare.  Hope this helps.  Remeber, every patient is different and responds differently.God bless you and your family,Diane Anniedips Sat, 03 May 2008 00:00:00 GMT Thank you Anniedips. I'm sorry to hear about your husband. I'm praying for my mother. This is the weakest she has looked. bensisco Sat, 03 May 2008 00:00:00 GMT Hi,My mother had no interest in eating, but was able to drink.  She lived on Boost Plus for months.  The plus versions of both Boost and Ensure have a lot more calories so you might want to look into that.  Sometimes we could get my mother to have soup or a little something else as well.  Good luck to you and your mother.    Roz Rosalind Mon, 05 May 2008 00:00:00 GMT I am so sorry to hear about your mom. Have they talked about putting her on TPN? My dad has been in the hospital for 40 + days at this point and he has been on it the whole time. It is an IV that gives them all the nutrition that they need. He hasn't eaten and they just recently put the feeding tube in but the whole time he didn't drop weight and his blood work shows that he is not malnurished. Might be something to ask about? Good luck you and your mom are in my thoughts and prayers. Sarah herefordad Mon, 05 May 2008 00:00:00 GMT Hello, herefordad,I asked her doctor about TPN this morning and he said do you want to prolong her agony? He admitted that he took her off of any nutritional support awhile ago without informing my family. He seem to indicate that he was willing to put her back on and she would probably come out of the semi comotose state she has started slipping into, but he said the pain from the cancer in her spine was pretty uncontrollable and was only going to get worse. He also said he wouldn't do it to his own mother and that we should let her pass on this way.I was not happy about what he'd done. Especially, since I have been telling him for awhile that we planned to take her to the research hospital to see if they could help her while she still had some life and energy. My family all wondered over the weekend how our mother could have taken such a dramatic downward turn in the last few days. Now we know. I was for restarting nutrition, but my siblings wouldn't speak up, only saying they did not want her to suffer for weeks/months from the cancer in her spine continuing to progress while she was fully conscious.I guess there's a part of me that will always be suspicious of her oncologist's arrogance and motives for making decisions for my mother without regard to what my family was telling him. So, I will always wonder if she had gotten to the comprehensive cancer center across town would they have been able to help her. Now I feel guilty for not being able to get her that chance. I feel like they allowed themselves to be convinced to give up. I wish I knew what my mother would want us to do. She could have told us had her doctor not secretly stopped her nutrition and allowed her to go downhill instead of releasing her. So, now she is still in the hospital slowly but surely dying. I would advise you all to make sure you discuss every scenario with your loved one while they are still healthy enough to be clear about their intentions. A living will would be even better. bensisco Mon, 05 May 2008 00:00:00 GMT I am so sorry to hear about what her doctor did. That makes me so mad doctors are supposed to be there to help not hurt the patient. The one thing that I will say is that sometimes when everything thinks that death is around the corner...they are wrong. During the time that my dad has been in the hospital they have told us that it was the end 3 times. This last time was about 10 days ago and they called hospice in. We decided to delay hospice for 3 days and then evaluate the situation. In those days he took a turn for the better and now tomorrow he is moving out of the ICU for the first time in 40 days. He is doing wonderful and told us that he feels 100% better. Just because someone tells you that it is looking bad doesn't mean that they are right. I would fight as hard as you could for your mom, give her another chance and see what happens. Even if she does end up passing away(which would be horrible) atleast you can say that you tried and you gave her a fighting chance. I am sorry that I am strongly voicing my opinion I just want to help if I can. Good luck and I am praying for all of you. herefordad Tue, 06 May 2008 00:00:00 GMT