Continued nausea

TrueBrit, I forgot to tell you that I was cold for the first six months which was due to the weight loss and I also sweat for no reason. I had low grade fevers on an off for the first two months but the chills were my worst problem. I honestly feel it was dehydration at times and my nurse pushed Gatorade on me and other juices. Sorry, I did not post this on my first super long post. Phil A.

Phil, I did not receive your private message, could you resent your response. Many thanks. TrueBrit. 

TrueBrit, I posted the message after Evelyn's message to you. I never sent a private message. Phil A.

I sent this privately, but don't think you got it. I have been wondering about you. Glad he is home, but it sounds like you are having a very rough time. It really will get better.

It's okay that he needs the tube, especially where he is having a hard time with food.  Pat did not tolerate the Vicodin at all, but was able to use Roxicet liquid (it's oxycodone/acetominopen so it's like Percoset only liquid). Pat did much better once I realized he couldn't tolerate the vicodin. I think the liquid works much better and gets into the system faster. We only used the pump at night for the tube, but if he had been less able to tolerate food, I probably would have run it more. It's been a few years since the surgery now, so I don't remember how fast we ran it. Different people tolerate different formulas to different degrees. They have different components of milk in them. One of the few things Pat can't tolerate is milk, but he's okay with yogurt and cheese. 

Is there a nutritionist working with you who can help sort through this? Some folks recommend baby food to start (very small portions without a lot of work for the new stomach). If things aren't really moving out of his stomach (what's left of it) it can cause a lot of nausea. His system has really been traumatized. We got a very comfortable recliner to come home from the hospital, and he spent quite a few weeks there before he found his way back to a real bed at night. Laying too flat on the sofa could be causing your husband's aspiration. It would help to clear his lungs and get him off the meds for that. I took Pat for short rides to lift his spirits (usually shortly after pain med to start), and got him out for brief walks on flat ground. We added a few more minutes a couple times each week to work our way up. You've had a bunch of complications, so things will be slower. Is he on reglan (metoclopramide)? Sometimes that messes them up mentally. We have better results with domperidone which helps with motility like reglan, but will not cross blood brain barrier so it tends to have less side effects (one of which can be depression). Domperidone is only available in US through some compounding pharmacies, so we order online from Canada, but have gotten it compounded locally when we upped dose and I was in a pinch. FDA will not approve due to secondary use for lactation, but it is okay for gastrointestinal use.

What about you? Is there anything I can offer? Caregiver is a very tough role.

I too am a caregiver to an ec victim who is struggling terribly. Pete just turned 46 this month. Was diagnosed last Aug and rushed into chemo/radiation - 6 weeks of rad with cisplatin/5FU for two of those weeks. He was hospitilized for about 3 1/2 weeks in Oct due to relentless vomiting ultimately caused by the placement of the peg tube which kept the flap between esophagus and stomach from closing all the way. Surprised he made it through surgery which was hell in itself. He was sent home a week before surgery for some psychological boost but when he got to the hospital for surgery, there were delays on the hospitals side which totally destroyed him emotionally. Finally surgery took place, he seemed to be recovering somewhat and now 8 months later he is worse than ever. He cant tolerate the feeding tube as it gives him major diarrhea can barely eat and is constantly retching. He has gone from about 265 lbs in the beginning to now about 145.   He is suffering so much and cant seem to get any answers. Has had a CT and PET scan followed by endoscopy this past week.  We get the results tomorrow and I can tell you he is scared. We know they found a couple of live lymph nodes, but what he is really worried about is the pain in his lower abdomen. His stomach is so tight it feels like a rock. I will come back to this board for a follow up. Thank God I found this sight. I need to communicate with others going through this.

 

On 7/19/2009 ColleenL wrote:

I too am a caregiver to an ec victim who is struggling terribly. Pete just turned 46 this month. Was diagnosed last Aug and rushed into chemo/radiation - 6 weeks of rad with cisplatin/5FU for two of those weeks. He was hospitilized for about 3 1/2 weeks in Oct due to relentless vomiting ultimately caused by the placement of the peg tube which kept the flap between esophagus and stomach from closing all the way. Surprised he made it through surgery which was hell in itself. He was sent home a week before surgery for some psychological boost but when he got to the hospital for surgery, there were delays on the hospitals side which totally destroyed him emotionally. Finally surgery took place, he seemed to be recovering somewhat and now 8 months later he is worse than ever. He cant tolerate the feeding tube as it gives him major diarrhea can barely eat and is constantly retching. He has gone from about 265 lbs in the beginning to now about 145.   He is suffering so much and cant seem to get any answers. Has had a CT and PET scan followed by endoscopy this past week.  We get the results tomorrow and I can tell you he is scared. We know they found a couple of live lymph nodes, but what he is really worried about is the pain in his lower abdomen. His stomach is so tight it feels like a rock. I will come back to this board for a follow up. Thank God I found this sight. I need to communicate with others going through this.

last two posts, I took a few days away from the site, for two reasons, my husband seemed to rally, i was starting to feel like a normal person again. Went back to work full time, but i call twice a day to check in, visitin nurse has been discharged, [Harry] is avoiding contact with medical folks, I don;t blame him. We cancelled two appointments for another barium series to figure out why the vomitting in the morning, I started giving him his Protonix at night, it worked...  for a while. We've stopped all pain meds, no more vicodin, it was responsible for sick feeling and the sweating, harry's emotional well being started to peak. We saw the local surgeon because he won't consent to giong to Boston - but i keep in email contact with his surgeon at BI, a great man, he has continued to consult with local doctors here, He did suggest Zophram to me, i am so vigilant of side effects and the heart med's he takes. Harry removed his feeding tube last thursday, yep, had a beer, I am not telling me no, he;s been to hell and back, and pulled it out himself, having got the okay from the doctors. It was twisted up like a pigs tail, an aha moment, being all kinked up like that probably caused the terrible stomach pain,.

He is drinking the enteral foods after chilling in the fridge. I have the frappe thing down pat, add Ice cream, add ENSURE add Whey protein and a little soy milk boost. He has been eating food at night, oh dear, that's probably what has made him so sick the last two days. EUreka. We seem to be making slow progress... Chicken noodle soup, hash out of the can, nasty but hey, its food. 

But he is depressed. Mostly about his body and lack of muscle, he was spectacularly muscular in a natural way before. It was the surgery that knocked the stuffing out of him, I can share that patient should only accept as much chemo and rad as they feel they can endure, I feel very, very strongly about that. Doctors do not know really, how much treatment works, they kist hope. a direct quote of our wonderful surgeon in Boston many months ago. how to get enough calories, how to stop the puking, I'll ask about the other med.

He's supposed to see the oncologist for a follow up tommorrow but I knkow he's going to be a cancellation.. he just doesn't want to have anything more to do with the medical profession, Its an old school yankee theory - again, i support his decisions for his own after care, within reason.

one thiing i am very very upset about is the drug he came home from Boston with for his heart, Digoxin, old worlde drug, we might as well eat the Foxgoves in the garden - I have to get him to his cardio. to re-assess. He is fluttery today, but it is very hot, we have a mountain view but no breeze today, I think he might be a tad dehydrated. 

Colleen, some people just can't tolerate feeding tubes, period. They do cause pain, inspite of what some may tell you, my husbands tube, he had two inserted over time, leaked stomach juices continually around the tube cuasing chemical burns on his stomach. He couldn't sleep at night because of the pain, moving around, caused pain, he just got sick of it. But you have to be assured you can get calories in via mouth, otherwise in serious trouble. I think most doctors have no clue about the after effects of the surgery,  they just don;t get it that one can't rearrange the geography asking a stomach to pretend to be an esophagus and think there will be no problems. I do think you should seek out gastric folks who do follow up with the surgery.... dieticians. I did link to one where we live who has been marvelous, and oh dear have i railed on these people. 

Today, July 29, life is a little  better. I feel able to try to offer help to others now, we travelled the valley of darkness, stared into the abyss, but the sunshine broke through last week when that confounded tube came out.

Bless you all for keeping track. i appreciate the information more than you know, well, actually, you probably do.

Truebrit.