CancerCompass message board discussion started by Daves Wife on 3/28/2007 http://www.cancercompass.com/message-board/message/all,10786,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ my husband is going through radiation treatments. he had a malignant tumor in his neck and it spread to 3 lymph nodes. the prognosis looks promising, but everything tastes bad, he has trouble swallowing, and he's nauseous. needless to say, he's lost a lot of weight. i'm so worried about the amount of weight he's lost and the fact that he's not eating very much. he gets annoyed with me when i try to get him to eat. what can i do? Daves Wife Wed, 28 Mar 2007 00:00:00 GMT make sure your doc knows about your concerns.  A dietician may be able to help.  One option is some of those liquid supplements like Boost.  They have calories, vitamins, protein and actually taste pretty good.  You can get them in most grocery stores. Oncrx Wed, 28 Mar 2007 00:00:00 GMT Radiation treatments affect the saliva and tastebuds (if the tongue is treated)  Good news is it usually comes back after treatment.  This is why for Head and Neck tumors I try to get the feeding tube.  It is hard to eat when you are sore and it tastes bad.  Keeping yourself hydrated and well nourished makes the patient feel better and tolerate treatments better.  You can still eat by mouth with the tube as well. Witchdoctor Wed, 28 Mar 2007 00:00:00 GMT thanks for your replies. the doctors know about his eating habits or lack there of. my husband has been drinking 1 or 2 boosts a day and trying to eat, but i still don't think he gets enough calories. they are trying to avoid the feeding tube because he is so young (he's 28). do you think they will make him get a feeding tube if they think he is losing too much weight? Daves Wife Wed, 28 Mar 2007 00:00:00 GMT Youth has nothing to do with a feeding tube.  As a matter of fact I think they do worse without it.  Two boosts a day is not enough and I can almost guarentee he is dehydrated which is potentially life threatening. Witchdoctor Thu, 29 Mar 2007 00:00:00 GMT he's definitely drinking water though. he brings a bottle with him to radiation in the morning and keeps a glass by the bed. why would you say he is dehydrated? i understand he needs to eat, but he does drink water. Daves Wife Thu, 29 Mar 2007 00:00:00 GMT Have you measured how much he drinks, he is carrying the water to rinse his mouth and keep it moist.  Many patients only drink small amounts and sometimes spit it out.  I repeat, he would do much better near and long term if he is getting nourishment.  The side effects won't be as bad and the recovery time less, in any age patient. Witchdoctor Thu, 29 Mar 2007 00:00:00 GMT i know he would do much better if he were eating more. i'm not sure why you think you can give an accurate opinion about what he is doing with the water if you are not here to see him. i talked to his doctor today, so i've received an opinion i trust. i'll no longer visit this board as i don't think i received much constructive advice. in fact, i think it is pretty destructive in terms of actual support. Daves Wife Thu, 29 Mar 2007 00:00:00 GMT I am sorry that you were ill served by one person who was not particularly sensitive to your needs. These message boards are somewhat erratic, true, but you carried on a correspondence with one person only. I see that their attitude wasn't helpful to you. Still, that was one person. It's not like all of us who visit here are available to monitor every message 24/7. We are patients and caregivers and have many competing priorities. One reason, in my opinion, that the boards seem so lacking in true support is that people don't understand this medium very well. As well, everyone is so sure that their opinion is going to be of value to someone else that they may be overbearing instead of helpful. Hey it happens. And it's challenging. I only reach out to you to remind you that condemning all of us in your message is another example of how someone (you) speaks out with emotion and honesty and winds up being hurtful to others without considering how that might happen. I could ignore you (that is what most people do most of the time around here) or I could take some of my time and vitality and reach out. Anyway, trusting your doctor is nice if it works for you and your husband. There are many of us who don't have that option, did you know that? When their poisons don't work, they toss the patient out into a hostile, confused world in which they don't even allow people to discuss healing alternatives rationally. My partner's doctors have decided that since chemo doesn't work, she should lay down and die in their mandated medicinal haze (keeping comfortable) now. It's silly, particularly since there indeed are other approaches to healing besides those that benefit the profits of pharmaceutical companies. But that is the reality of the system that remains entrenched PARTLY because we are so unable to create meaningful dialogue with one another or to create powerful coalitions of the afflicted who could demand a change in this insane cancer industry. Whatever, Daves Wife, I wish you and Dave lots of luck and years of happiness. I am sorry to have bothered you with information that you probably have no interest in, but since I just spent all this time writing it, I guess I will send it out. On 3/29/2007 Daves Wife wrote:i know he would do much better if he were eating more. i'm not sure why you think you can give an accurate opinion about what he is doing with the water if you are not here to see him. i talked to his doctor today, so i've received an opinion i trust. i'll no longer visit this board as i don't think i received much constructive advice. in fact, i think it is pretty destructive in terms of actual support. Nutri-girl Sun, 01 Apr 2007 00:00:00 GMT i didn't mean to offend anyone. and you're right, it was one person's opinion that truly bothered me. but not many people responded to my actual message. the main response i got was not supportive and put me into a tailspin of worry and angst. as if i don't have enough of that. thank you for your well wishes and i'm sorry about what you are going through. i just don't think this is for me. thanks for your response though. Daves Wife Fri, 06 Apr 2007 00:00:00 GMT  On 3/28/2007 Daves Wife wrote:thanks for your replies. the doctors know about his eating habits or lack there of. my husband has been drinking 1 or 2 boosts a day and trying to eat, but i still don't think he gets enough calories. they are trying to avoid the feeding tube because he is so young (he's 28). do you think they will make him get a feeding tube if they think he is losing too much weight?Hi Daves wife, I have been giving my husband Eddie a supplement called Polycose. I was using Ensure but that is full of sugar so I stopped and tried this and its working.it is tasteless so he does not even know its in his meals.. You can mixed it in anything and 1 tablespoon full is 23 calories. Its very good and he is now putting on weight , its worth a try. I put it in his cereal or soupsand anything else I can get it in.I got it from the dietician but you can buy it in the chemist and its not expensive.I do hope Dave improves. I am trying to get Eddie ready for his operation on the 29th May and now I am worried him may put on too much weight.Good luck my thoughts and porayers for you both.Mary   Marymint Mon, 14 May 2007 00:00:00 GMT