Partners even more likely than survivors to experience fear and worry over long term, study finds
by bluesguy on Wed Jan 02, 2008 12:00 AM
my first post....
but wish i'd thought of this a few months ago....
anyway, i had the procedure 3/30/05, and have been clean since. several months of dumping miseries, but made some adjustments and have been eating essentially "normally" since. until about six months ago, that is...
although i'd been sleeping with my head elevated since the surgery, it hadn't seemed to make much difference. then one night i woke up with no airway- quite a frightening experience. apparently my head had come off the pillow and i had aspirated some stomach contents. got my airway back after a few sweaty minutes, but had a similar episode a couple of weeks later.
since then no airway crises, but frequent episodes of waking in the night with horrible nasty mouthfuls of, i guess, stomach acid. really unpleasant, yet this had never happened once during the first 18 months.
by frequent i mean sometimes 4 or more times per week, with occasional periods of almost 2 weeks with no occurrences. (yes, i have been taking various meds in the pariet/nexium family- my surgeon had me double my pariet intake- helped a little, but does not feel like a solution.) the initial experience is so freaky, one's first instinct is to somehow get rid of the acidity- drink soymilk or eat ice cream- anything to coat and soothe... but after a few weeks of this i began to realize that every episode's primary feature was heavy duty coughing, which eventually produced heavy mucus from the lungs... and then from the stomach (apparently)... sometimes followed by nausea, dry heaves. the whole thing kind of cycles back to normal over the course of an hour, although it often leaves me feeling greatly weakened, depending on the severity of the coughing, gagging, etc.
i had already learned (confirmed by my dentist) that this reflux was corroding my teeth... suddenly dawned on me that the coughing must be due to aspirating acid- into my lung tissues....
not pleasant to contemplate what something that eats teeth might be doing to lung tissue.
anyway, i've learned that aspiration is an for patients under anesthesia, but my GP and surgeon have both essentially been dismissive of my concerns, especially my surgeon, who suggests everything is normal, be grateful the cancer is gone, double your pariet, etc.
my GP is more interested, but still seems somewhat skeptical. i did see a naturopath who suggested a greatly modified diet to reduce acid production (essentially no-sugar, no-grains, no dairy). this helped but did not eliminate the problem- seemed a bit arbitrary and after 3 months i began to (rebel?) adhere to it less strictly, with only minor effect either way.
ending a stressful relationship seemed to give some relief- then a strenuous roadtrip intensified it, so there is apparently some correlation to stress.
most recently (in the last month) i've begun to experience quite severe shortness of breath, wheezing, during physical exertion that has never been a problem for me in the past. basic yardwork, digging, raking, etc. and also lengthy peformances with the harmonica (more of a concern, in a way). last week my GP agreed to have some airway tests done- waiting to hear from his office for an appointment date....
except for this baloney my quality of life has been pretty great- so it is pretty tough to contemplate having to accept this state of things as normal for the rest of my life....
and i am CERTAIN, given the increase in espohageal cancers worldwide, that i am not the only one going through this experience. or am i?
feedback, etc. would be swell. thanks in advance.
by Cyclist on Wed Jan 02, 2008 12:00 AM
I had an esophagogastrectomy, Ivor-Lewis, (basically the same as esophagectomy except possibly more stomach removed) July 2005. I have only had reflux a little bit recently. Before surgery, I did ask the surgeon what would happen after surgery since I would end up without a valve at the esophagus/stomach junction. He said that since I had reflux for so long that, for all practical purposes, I didn't have a valve left. He also told me that the part of the stomach that is removed is the acid producing part and I would not have acid like before.
The reflux I have is not like before. It is not burning pain. It is more of a horrible taste. I think the valve at the bottom of my stomach was surgically relaxed so the contents would pass through easier. I believe it works both ways and allows contents to come back up. I think what is coming up is bile. If so, I don't see how acid preventing meds will do any good.
I don't know if our surgeries were the same. But I would also be interested in what people have to say about the post-surgery reflux. Mine is not nearly as bad as you describe, but if it starts later I may have that to look forward to.
by Gerri on Wed Jan 02, 2008 12:00 AM
I had EC and esophagactomy in April 04. I had the "dumping" that we all experience, but have also had reflux and have aspirated stomach bile many, many times. My instances have been fewer and further between since I bought an electric bed that forces me to sit up further, I make sure that I do not eat three hours before I go to bed and I take Previcid in the morning and if I do screw up and eat too late I take a Zantac before I go to bed. Once I do aspirate, it takes me about a week or two to get over the congestion, and believe me the pain when you aspirate stomach bile is almost unbareable, as you well know. I no longer have the "flap" over the stomach. My cancer was midway up the esophagus and they did a stomach pull up to create an esophagus. So far I am cancer free and I work everyday. This situation is the biggest problem I have, but I am grateful that this is my main problem and is not cancer returning. I also mentioned the thought of damage to my lungs to my doctors and they tell me that this can go on a long time without permanent damage and I have had breathing tests and my lungs are functioning normal. When I have this aspirating problem, I have shortness of breath until I get rid of the congestion. I hope this helps you to know that this is a common thing. I had surgery and chemo and radiationat Duke Medical Center, NC and I have had very good doctors.
Best wishes, Good health for 2008
by tongrenhealer on Wed Jan 02, 2008 12:00 AM
by bluesguy on Thu Jan 03, 2008 12:00 AM
On 1/2/2008 Cyclist wrote:bluesguy,I had an esophagogastrectomy, Ivor-Lewis, (basically the same as esophagectomy except possibly more stomach removed) July 2005. I have only had reflux a little bit recently. Before surgery, I did ask the surgeon what would happen after surgery since I would end up without a valve at the esophagus/stomach junction. He said that since I had reflux for so long that, for all practical purposes, I didn't have a valve left. He also told me that the part of the stomach that is removed is the acid producing part and I would not have acid like before.The reflux I have is not like before. It is not burning pain. It is more of a horrible taste. I think the valve at the bottom of my stomach was surgically relaxed so the contents would pass through easier. I believe it works both ways and allows contents to come back up. I think what is coming up is bile. If so, I don't see how acid preventing meds will do any good. I don't know if our surgeries were the same. But I would also be interested in what people have to say about the post-surgery reflux. Mine is not nearly as bad as you describe, but if it starts later I may have that to look forward to. Good Luck,Steve
hi, steve (which is also my name....)
thanks so much for the feedback. and to the others- looks like i have to do separate replies, which is probably good... i may be less likely to do my rambling thing...
i'd never heard of the ivor-lewis procedure. i had a transhiatal job with gastric pull-up, but apparently the top third of my stomach was removed in the process, and the vagus nerve was severed (which i gather is unavoidable... but that is what controls valve action (at both ends?).
it's funny, the taste i get is what i always imagined bile would taste like, but you are the first person to suggest it might actually BE bile. i don't actually know a dang thing about bile- is it normally in the stomach? is it part of the stomach's digestive mechanism? looks like i have a little (further) research to do
but i can add that not only does this whatever-it-is taste totally nasty, i also experience major burning sensations throughout the reaction (which i omitted to mention in my first post). because of the generally distressing nature of the aspirating experience, it took me a few episodes before i could sit with it and try to determine exactly where i was experiencing the burning. i had a general sense that it was in my throat, but once i actually checked it out (and had another cycle of deep nasty coughing leading to vomiting gobs of mucus) i knew it was in both my neck/throat area and in my chest/lungs.
it does seem that the mucus is a mixed blessing, it's gross, but it also seems to be the body's attempt to ease the burning and general nastiness. it is usually a marker for me that the episode has maybe a half hour to go before i can go back to sleep or at least relax and try to get some of my strength back...
i would really like to end up in a zone where i can control all this without the use of meds... at least they are covered by my blue cross, although i do have to pre-pay... ionly take the pariet at night, since i only experience this crap at night.
another note... the aftermath is almost identical to the fatigue, weakness, dehydration, etc. that follows a classic dumping episode...
okay, going to reply to the other two now- presumably this will all be visible in the greater thread....
steve (no, not you-- the other steve)
thanks a lot for your thoughtful and very helpful reply. again, clearly had i done this forum thing months ago i'd have felt like less of a weirdo. as i mentioned in my reply to steve, the nasty taste is what i always imagined bile would be like- but then how would anyone know what bile tastes like? never heard of "aspirated stomach bile" before today.
by the way, had a really crappy night last night, one of the worst ever (guess it is what led to my joining this site, so it's not a total loss)... and not only have i been feeling wiped all day (barely able to stay at work), a chunk of tooth came out in the small amount of breakfast i tried to get myself to eat at work. more damage due to the erosive properties of the bile or acid or whatever it is (sigh...).
i have elevated the head of my bed, hope i do not have to resort to an electric bed- but that possibility is looking less far-fetched as this seems to be progressing.
i often get sloppy with the 3-hour thing, but i don't always pay the price, either. the closest to a dead-certain outcome i've encountered was in the early stages of my last relationship- i'm an ex-smoker (since the surgery) but she smokes a pack a day, and at first i would try the occasional after-dinner smoke to be sociable, less rigid, whatever... and EVERY night i had a smoke or two i would have an episode. regardless (it seemed) of the elevation of my head or when i last ate-
but clearly it is a lot more than smoking that's involved, since i totally stopped doing that after a couple of weeks of bad experiences.
it is so weird (and frustrating) to me that both my surgeon and my GP essentially deny the possibility of my aspirating. has the news not reached the wilds of canada yet, or something?
"Once I do aspirate, it takes me about a week or two to get over the congestion,"
could you tell me a little more about what you mean by this, by "the congestion"? do you mean the shortness of breath and wheezing due to aspirated stuff in your lungs? or just the genreal feeling of having been through a war? one way or another, it is slowly starting to take its toll on me, that is clear.
i wonder what your doctors mean by a "long time" when they are discussing your body's ability to endure the aspiration....
as i mentioned earlier, i will be having a breathing/airway assessment soon... that should be interesting- it is true that sometimes a day or two later i will have a major coughing episode in the middle of the day, and sometimes enough gunk comes up (is this the congestion you are talking about?) that i do feel better after... but there is still stuff left behind for more wheezing,etc.
i am lucky in that my cancer was detected very early (was only type 1), and they got it all and i did not need to have chemo or radiation. but i am still not willing to just shut up and resign myself to this stuff. but at the same time i often wonder exactly what it is i am expecting my doctors to be able to do about it... another procedure? not really, although the fact that this has developed so long after the surgery makes me think something in the mechanism has changed, maybe deteriorated....
more meds? different meds?
hopefully it will make more sense after i compare notes with more of you- and maybe get my doc to read some of these posts from others like yourself.
thanks again, gerri-
On 1/2/2008 Gerri wrote:I had EC and esophagactomy in April 04. I had the "dumping" that we all experience, but have also had reflux and have aspirated stomach bile many, many times. My instances have been fewer and further between since I bought an electric bed that forces me to sit up further, I make sure that I do not eat three hours before I go to bed and I take Previcid in the morning and if I do screw up and eat too late I take a Zantac before I go to bed. Once I do aspirate, it takes me about a week or two to get over the congestion, and believe me the pain when you aspirate stomach bile is almost unbareable, as you well know. I no longer have the "flap" over the stomach. My cancer was midway up the esophagus and they did a stomach pull up to create an esophagus. So far I am cancer free and I work everyday. This situation is the biggest problem I have, but I am grateful that this is my main problem and is not cancer returning. I also mentioned the thought of damage to my lungs to my doctors and they tell me that this can go on a long time without permanent damage and I have had breathing tests and my lungs are functioning normal. When I have this aspirating problem, I have shortness of breath until I get rid of the congestion. I hope this helps you to know that this is a common thing. I had surgery and chemo and radiationat Duke Medical Center, NC and I have had very good doctors. Best wishes, Good health for 2008Gerri
On 1/2/2008 tongrenhealer wrote:Husband had Ivor Lewis and about a year later started to have reflux. Gastroenterologist wanted him to take Reglan before bed but he reacts to it with neurological side effects, so he prescribed domperidone at bedtime (same as reglan but does not cross blood brain barrier so doesn't have same neurologics with it). Domperidone is not legal in US, but can be gotten through web pharmacy out of US with prescription. Also can get in US as experimental for gastrointestinal purpose but must go through baloney with FDA or some such thing. Easier to order online and it has worked really well for him.
hi tongren- (holy smokes, i know what tong ren is- i even had a few sessions of it shortly after the surgery.. still use an aspect of it- a cd- but that's another story)
as i mentioned in a reply to someone else, the term "ivor lewis" is a new one on me, but sounds like it is pretty similar to the general re-arrangement i experienced- the reduced stomach size and gastric pullup.
funny how this "domperidone" sounds like dom perignon- at first i thought you were just making a joke, that your husband was finding a couple belts of cognac before bedtime therapeutic.
i actually live in canada, so it might be an option (not the cognac, the domperidone) . funny also because (although i have no idea what the stuff is) yesterday i suddenly thought of checking out the medical marijuana angle- something i would have totally rejected months earlier. but i need to check out the possibility that it might somehow mellow out my digestive process...
my GP (meanwhile) won't even refer me to a gastroenterologist, despite my request that he do so ("no, no. we need to work on this together, you and i" is his kinda weird response..) ironically it was a gastroenterologist who detected the cancer in the first place... i wanted to see him because i thought he might have at least heard a little something about all this aspirating and bile and post-op reflux, etc.
i am assuming that when you guys ARE able to get the domperidone, it makes a significant difference for your husband?
meanwhile, i will research it online tonight....
thanks so much for your helpful response....
by tongrenhealer on Thu Jan 03, 2008 12:00 AM
On 1/3/2008 tongrenhealer wrote:Hi-We laughed over the domperidone because it sounded like champagne, and Tom Tam always makes comments about cognac in tongren class. It really has helped. He totally stopped with the reflux thing, and like you he aspirated it into his lungs a few times which really freaked him out. Also seems like once the cycle starts it is hard to knock down again. Although I hate to admit it (since it is not legal here), I would highly recommend the medical marijuana angle because it does seem to relax the digestive tract when it's in distress. If we were to move,one of the things that would seriously play into our decision would be the stance on medical marijuana. I would also recommend trying tongren for the reflux (I'm guessing vagus nerve point but I can check my books for other points)-we didn't work with it a lot for that since we were usually trying to prevent the cancer from returning or clearing out bad effects of chemo and radiation, etc. I actually tap on him daily and do vagus nerve as part of my daily regimen on him. They do conference call lines now for long distance work and I hear it is very powerful. Have a friend in Nashville who has been doing the metabolism group call (20+year stomach cancer survivor). She can't believe the difference in her digestion after years of misery, and her restless legs vanished too. She's never been to class, seen it done, or watched the CD series, but got a doll a few weeks ago to explore it further. Don't know what to say about your GP-we fought for the gastro referral with my husband's ex primary care, (he thought he could figure it out without any real diagnostic testing) and paid for it dearly because he was Stage 4 when diagnosed. I don't understand why doctors can't just give it up and recognize that someone who specializes is more appropriate at times. Good luck with it.
just woke up from a good night (slept on the couch- figured less room to wander off the pillow...for now, i'll take it...)
i hesitated to mention good ol' tom tam in my last post, because i couldn't remember how specifically the term 'tongren' is tied to him.
my own tom tam history... i the had surgery, suffered a lot from dumping in the first month. a friend in nanaimo (50 miles north of victoria, where i live) who is a tongren practitioner, basically FORCED me to accept a "loaner" copy of the "pi gu" cd. i'd say that last night would be getting close to the 1000th time i have heard that little voice saying "let's all be lazy bums for 5 minutes..."
there is no rational reason for it (in the western sense of rational, anyway), but i experienced great benefit from the dang cd the first time i listened to it. and it is always and still is my go-to resource when i am experiencing digestive distress, and even when i know i just need to have an hour of solid rest.
two months after starting to use to the cd, she (my friend roz) phoned me to tell me excitedly that tom tam was actually coming from boston to offer two days of workshops in nanaimo, and that she had signed me up as a "guinea pig"... which would mean i could attend for free. so i did go... i will never forget my first few minutes in that classroom- as i took my seat in my little gradeschool-type desk i looked up and saw close to 20 practitioners, almost all women, lined up across the front of the room, each with a little doll in one hand and a maxwell's silver hammer in the other, all beaming at tom tam as he stood there giving prompts, to which they would always respond by shifting to a new area of the doll they were already furiously tap-tap-tapping on....
i was among people with parkinson's, several kinds of cancer, chronic fatigue sydrome, endometriosis, palsy, PTSD... some pretty heavy stuff. and despite my good experiences with the cd and my general willingness to go through life with an open mind, i was having a hard time keeping a straight face.
but the truth is, during that first day, i witnessed clear improvements in poeple with several fairly extreme physical manifestations of their conditions- palsied limbs relaxing, a guy who entered the room barely able to navigate via a walker but who exited on his own (marvelling) steam... in my case, i experienced that mind-blowing warmth in the affected area that is felt instantly when the practitioner starts tapping the corresponding area of the doll (and especially when that tapping is multiplied by 20!)... i felt a little off in the sense that tom was focusing on what he called my esophagus, when i had made it clear that i have no espophagus, and so i think i may have balked a little and prevented my ten minutes of treatment from being more effective. he was probably simply referring to the function that my relocated stomach now fills... i have had several opportunities to stay connected through distance healing and further workshops but have just stuck to my use of the cd.
but your email reminds me that i don't have to stay stuck there. for one thing, my own condition has changed- what better time to re-explore the whole tongren/healing spectrum. hard to think of a more altruistically motivated (and less profit-driven) force for healing in the world today.
anyway, i have to get ready for another day of work... which seemed very sketchy as a possibility when i went to bed last night.
hey, even the support of others out there (wherever you guys are) has some concrete benefits. and i am newly determined to find a way to get to an internal medicine guy. and to make at least some initial inquiries into the medical marijuana. i actually do some harm-reduction work with the guy who is the head of the local "compassion society"- he has been urging the stuff on me for almost 2 years because of my hep C- and i have always turned him down... maybe not this time....
anyway, cheers for now (as they say in canada... ) and all the best to you and your husband, and especially continued good recovery.
oh yeah, the one thing that made me a little cautious about the domperidone (after reading about it last night) was that it works partly as a dopamine blocker, and i have just weaned myself off antidepressants because of their effect on dopamine receptors (partly for that reason anyway). so it does occur to me that marijuana might not include that effect. interesting, huh? we'll see...
by Gerri on Thu Jan 03, 2008 12:00 AM
I started typing this earlier, but hit the wrong button and apparently erased the whole thing. So I printed out your message and I am going to try to answer each question that you asked. So if you got two messages, I am sorry.
First I want to say to you that you are doing the right thing. If you have questions, you keep asking till you are satisfied that you have received the answer that makes you feel comfortable. You are in charge of your health care and eventually you will be satisfied with the answer you are getting.
When I had my esophagectomy, I was told by my surgeon that I would always have acid reflux. and that I could, thats the operative word, could, aspirate stomach contents and stomach bile. My flap was completely removed. Well he was right. I can and I have. When bile gets into my lungs the burning pain is unbareable. I usually start coughing and throwing up right away.
And I like you, don't always stick to the three hour thing like I am supposed to, and I don't always pay the price either. After all, my husband and family like to go out to dinner and I don't always get my meals when I should, and like you, I don't always pay the price. I have never smoked and I tried a half glass of wine a couple of times since the surgery, but I have never been a drinker either so that doesn't interest me so why drink. I never know what is going to set my system off. As far as your smoking and your lungs are concerned, it might be that it will take time for the lungs to totally recover from your years of smoking. I am sure they are getting stronger every day.
The congestion. I have shortness of breath, wheezing, feel like someone cut the bottom off my feet and all my juices and energy ran out on to the ground. Of course, the coughing. When I told my doctor about the foam and the aspirating, they told me that is the bodies way of fighting the foreign substance that the lungs are not accustomed to. ANd that it was a good thing. ???? I just took them at their word, I was satisfed with their answer. I don't know about the longtime damage, I just know that I have had a breathing test about once a year, and they tell me it is fine. I do not have any breathing problems, except when I am having an episode. I knew I was not going to come out of this surgery, chemo and radiation without some life changing effects and I haven't. Learning to live with them has been difficult, but most days I feel wonderful. If I have a bad night, it takes a few days to get over it, but I do.
However, my lungs are clear most of the time. In April I will be four years out from the surgery. Thank God for that.
And yes, I have learned to live with my surgery, and you will too. This is sssooooooo much better than cancer.
Rest today, and remember that as time has passed for me it has gotten better. Hopefully it will for you too. God Bless You.
I hope I have helped.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
Did you or your loved one seek a second opinion before starting cancer treatment?
No, but we got a second opinion after we started treatment
We care about your feedback. Let us know how we can improve your CancerCompass experience.