Feeding Tubes- Smart, or weak
Comments
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Informed Decisions~
Kent Cass
You make valid points, and I don’t want anyone to suffer needlessly because they were either uninformed or misinformed (especially by me)…
I do support the PEG and also agree in a lot of cases the PEG could be beneficial, in some cases it could be critical, but also in some cases it’s not really a factor and shouldn’t just be stuck in there because you might need it.
Be informed, trust your MD’s or get one you do. Yes, some make mistakes as do some “informed” patients. I am at a comfort level with my ENT and Chemo MD, that I don’t second guess them. But those two are an exception to me (one that doesn’t trust anyone easily)….
I don’t want anyone to take away from these conversations that getting a PEG is weak…not taking in nutrition willingly is weak. You just do it, one way or another, you do whatever it takes….. If you can’t make a conscious decision, someone needs to make it for you, be that a caregiver or MD.
If you at all think you are at risk of needing one, get one. You need to be concentrating on getting through treatment and healing. Not second quessing yourself on the PEG. Yes, you always have the option after the fact, but I'm sure it's better to get it upfront. Never be so vain to to think you are now weak because you need one after the fact, do it...if you need it get it, it's that simple. If I would have needed one after the fact, you can rest assured I would have been in front of the line to be hooked up.
sweetblood ~ Dawn
There are no cookie cutter answers. There is no standard answers. There are only OUR TRUTHS. Our stories and our journeys. I share mine and relate mine openly and honestly, every time. Take from it what you will.
If I had to pick a side to come down on, to Peg or not to Peg??? I would probably come down on the side of caution and say to get one, but no, I don't think every one should get one all the time.
soccerfreaks ~ Joe
The responses to this post have been great. It is indeed a personal thing, it is indeed dependent on individual needs. But some folks need it and should not be concerned about vanity or toughness but about living.
These are both great responses, I don’t even have to add any of my own comments to re-enforce my own opinions….
Best,
John0 -
Kent ~ ExactlyKent Cass said:John
Your first reply highlights one of the reasons for this thread- you and your Dr. talked of the PEG, early-on (that's in the paragraph with the questions). I just wonder how many others had it on the table with their Drs before tx started. As in all cases, your Dr is supposed to know the specifics of your C and the tx planned, and your Dr made the right call. But I wonder how many other Drs ho-hum the PEG matter, because they don't realize how bad it can get for some of us; and, thus, do wrong by their patients. That is the real issue that, I think, Sweet and I have with those who speak of a PEG in boogety-boogety terms. I consider the PEG to be a matter of critical importance for many in H&N, though not all, to get thru it all as best they can.
The "smarts" thing is to stress the benefits of a PEG eliminating the involvement of the problem area(s) of ingestion. The "vanity" thing is to tough-crowd ridicule those that wanna think they're tough by not getting a PEG, then tell us they woulda been smarter if they had by describing what they went thru. That has nothing to do with you, John, as you are most humble in your self-appraisal. And, the focus of discussion should rightly be on how beneficial, or essential, a PEG can be for one in H&N tx, and beyond.
Believe
kcass
Being well informed is essential, communication and trust in your MD's (not blind trust, trust that has been earned and proven).
I was more lucky than informed, it just worked out for me because of the faith I had in my MD. Hopefully these discussions will be used to inform others just starting this journey. If nothing else to communicate with the MD's, especially if the PEG isn't brought to the table as you say.
I have to say that my MD's and facility is very impressive and progressive after my experience and especially reading experiences of others on here.
My ENT has always been the lead, the facility always kept myself and wife informed. They had chemo introductory classes. Giving me all of the details and specifics of my Dx, TX. What when and where's... Handouts on each of my chemo drugs giving origin, side effects, etc...(which I loved since I'm a trivia nut)...loved learning that Taxotere is a derivative from the YEW Tree, with medical history going back to mid-civilization times. Cisplatin is heavy metals based, Platinum, etc.... 5FU can't remember that one...LOL, the FU always stuck in my head as being appropriate.
Covering fevers, if you have a fever of 100.5 in the middle f the night, call-in, don't wait until in the morning, it might be too late for you...dang, I remember saying that I was going to stick one of those digital meat thermometers in my butt and set the alarm for 100....
Documentation on fevers, MD emergency call-out numbers....everything I could possibly think of, they covered....
Gee, I guess I was more informed than I thought.....
Best,
John0 -
Wait, wait wait....Kent Cass said:Thanks-
Deb, as your Dr appears to realize the difference a PEG can make. And yes, I got a G-tube.
Dr. Mary- it seems your Dr kinda lumps all H&N patients together, by what you state. And I kinda think that's wrong, as most will likely agree. We are all different- where our C is, and how advanced, and what kinda C we have, as well as the specifics of the treatment we get. I seem to remember your saying Doug had three really bad weeks with almost no Nutrition, but did get hydrated. Might his treatment experience have been less extreme to the bad if he'd had a PEG and had no obstacles from the lips to the stomach? Or was his only problem nausea? More to the point- did his throat condition make the getting of Nutrition and water so difficult that he suffered relatively needlessly for those three weeks, compared to how he woulda suffered if he was getting the Nutrition and water? If you answer Yes to the last question, then perhaps he woulda been smarter to get the PEG, and not suffer so much, or run the risk of the problem landing him in the hospital.
Again, like Sweet, I was not given an option. And, yes, my Onco put me on Morph at the start of week #2, without my asking for it. My Profile page kinda explains why. The real issue is how many fall into the borderline of a PEG making a definite Positive in getting thru treatment as best one can, and how Drs might be correct in deciding on the side of caution to better help their patients get thru treatment with the PEG path that is unobstructed by the damaged mouths and throats. Having lived the PEG experience for 15-months, I am of the opinion that all who are borderline with their specifics should opt for the PEG, as many Doctors seem to do.
kcass
Have to clear up a few things. I was going to stay out of this one, but I need to jump in for the sake of accuracy.
I did have a choice. My RO recommended a peg for me because I was so tiny, and because (I found out later) I had previous issues with my esophagus and needing to be dilated before I even had cancer. I couldn't swallow and food was getting stuck farther down than where my stricture is now tho. I had actually lost 20 lbs because of not being able to swallow because I was feeling full early because the food was sticking there. Hungry in my stomach but full and couldn't eat anymore. I know that sounds weird, but that is what it was like. Anyway, back to the peg tube.
So my RO here at Geisinger where I was treated recommended it. I told him I didn't want to. He said ok, but if I started losing weight he was going to make me. I went to get my second opinion at CTCA because I wasn't happy that Geisinger were reccomending chemo for me knowing that I was a Fanconi Anemia patient. I talked to a nutritionist there and she felt if I decided to go with treatment that I needed one. Also the hematologist onc recommended it for me too.
Then I went to Cornell, and that RO said that I was too tiny and HE recommended it. He said with unknown primary i would be getting a lot of rads and he is a fanconi anemia expert and told me that the odds were more that i would die from rads than live. I needed to give my body every fighting chance. I was still unconvinced, and frankly scared and VAIN. I did not want one. I went home and then I was trying to figure out what to do, and started researching radiation and came across the statistics for how many patients who go thru rads for HNC die of malnutrition. That scared me. I read on how I should insist on a nutritionist on my team if I was going to do rads. I was rethinking my position of no peg at this point. So, I called Geisinger and told them I wanted a nutrtionist. I started thinking about all the stressful times I had previously in my life, and how I lost a lot of weight in each one of them. How at 120 pounds there wasn't much to play around with. Then the nutritionist recomended it too. I decided I'm my case I better be pro active about it than reactive. So they wore me down. Thank God.
Do I think everyone should get one? No. Do I think most should, probably. In my case, even if my mouth was ok and not as bad of a train wreck, the radiation still ended up damaging my esophagus and swelling and scar tissue and I have that stricture. So, if I didn't put it in before I started rads, I don't know what would have happend. I was at the point when I was trying to eat yogurt I couldn't. It was blocked.
Here is what annoys me:
1. People saying if you need a peg, you are weak and you should just be able to take pain meds and or numb your mouth and chow down.
2. People saying that patients are 'refusing' to eat. Like they just don't want to. Like they are just being difficult.
3. People saying that you just need to man up and not whine about it.
Those of us that have had the sh!t end of the stick on the side effects train will never understand what it was like to be able to swallow ok and have less pain during treatment. Those who thank God, had less side effects or could tolerate pain better or had less rads, whatever it may be, that had and easier time, will never understand the pain and frustration of having more severe side effects. And I hope they never do! With all my heart I hope no fellow HNC patient ever has to endure what I went thru. This is my prayer EVERY night!
There are no cookie cutter answers. There is no standard answers. There are only OUR TRUTHS. Our stories and our journeys. I share mine and relate mine openly and honestly, every time. Take from it what you will.
If I had to pick a side to come down on, to Peg or not to Peg??? I would probably come down on the side of caution and say to get one, but no, I don't think every one should get one all the time.
Hey, chemo was recommended for me and I 'refused' that. We all need to make our own decisions.
Meanwhile, I am hoping that each and every one of us will respect eachothers journey, truth, and experiences. None of them are right or wrong.
And that's my .2 cents.0 -
Yes-Skiffin16 said:Informed Decisions~
Kent Cass
You make valid points, and I don’t want anyone to suffer needlessly because they were either uninformed or misinformed (especially by me)…
I do support the PEG and also agree in a lot of cases the PEG could be beneficial, in some cases it could be critical, but also in some cases it’s not really a factor and shouldn’t just be stuck in there because you might need it.
Be informed, trust your MD’s or get one you do. Yes, some make mistakes as do some “informed” patients. I am at a comfort level with my ENT and Chemo MD, that I don’t second guess them. But those two are an exception to me (one that doesn’t trust anyone easily)….
I don’t want anyone to take away from these conversations that getting a PEG is weak…not taking in nutrition willingly is weak. You just do it, one way or another, you do whatever it takes….. If you can’t make a conscious decision, someone needs to make it for you, be that a caregiver or MD.
If you at all think you are at risk of needing one, get one. You need to be concentrating on getting through treatment and healing. Not second quessing yourself on the PEG. Yes, you always have the option after the fact, but I'm sure it's better to get it upfront. Never be so vain to to think you are now weak because you need one after the fact, do it...if you need it get it, it's that simple. If I would have needed one after the fact, you can rest assured I would have been in front of the line to be hooked up.
sweetblood ~ Dawn
There are no cookie cutter answers. There is no standard answers. There are only OUR TRUTHS. Our stories and our journeys. I share mine and relate mine openly and honestly, every time. Take from it what you will.
If I had to pick a side to come down on, to Peg or not to Peg??? I would probably come down on the side of caution and say to get one, but no, I don't think every one should get one all the time.
soccerfreaks ~ Joe
The responses to this post have been great. It is indeed a personal thing, it is indeed dependent on individual needs. But some folks need it and should not be concerned about vanity or toughness but about living.
These are both great responses, I don’t even have to add any of my own comments to re-enforce my own opinions….
Best,
John
I thank all of you who've responded in this thread. And, yes- I stand corrected, Sweet, and I apologize. Still, with what became of your mouth and esophagus, your Doctors would have taken your choosing in the matter away, girl, so please give me a 7% okay for your not really having been given a choice.
And Bob, I am sorry to hear you fell into the 1%. I know Sweet, and others, have expressed complaints with the experience, and nobody much cares for how they physically are, including me. Still, I gotta tell you my G-tube was just about the best friend I've ever had, there for a couple months.
And John, as always- thank you. I agree with all you say. I got no problems being branded the PEG Advocate, but I'm not saying everyone should get one, either. The ENT and Rad/Onco should be the ones to best advise the individual patient, as I've said, because they're the ones who know the C and treatment specs that said patient will have to live with. And it is good for you to be here to let people know that it is possible some will truly not need one, and at the same time telling people that if their Drs advise that it's the smart thing to do, then get the PEG. We are all different, to be sure, and all Drs and patients should be open-minded on the PEG matter, and if the need be there- do it.
And, as Dr. Mary alluded to in her post, Lord knows how harsh H&N treatment can be for some people. I know this thread will not close the matter as being somewhat controversial, but I do hope maybe a new patient might stumble upon it and venture to ask their ENT or Rad/Onco Dr about it before treatment starts, and get the danged PEG installed, and it will make the same kinda difference as it did with me.
Again, thank you all. And-
Believe
kcass0 -
To PEG or not to PEGKent Cass said:Yes-
I thank all of you who've responded in this thread. And, yes- I stand corrected, Sweet, and I apologize. Still, with what became of your mouth and esophagus, your Doctors would have taken your choosing in the matter away, girl, so please give me a 7% okay for your not really having been given a choice.
And Bob, I am sorry to hear you fell into the 1%. I know Sweet, and others, have expressed complaints with the experience, and nobody much cares for how they physically are, including me. Still, I gotta tell you my G-tube was just about the best friend I've ever had, there for a couple months.
And John, as always- thank you. I agree with all you say. I got no problems being branded the PEG Advocate, but I'm not saying everyone should get one, either. The ENT and Rad/Onco should be the ones to best advise the individual patient, as I've said, because they're the ones who know the C and treatment specs that said patient will have to live with. And it is good for you to be here to let people know that it is possible some will truly not need one, and at the same time telling people that if their Drs advise that it's the smart thing to do, then get the PEG. We are all different, to be sure, and all Drs and patients should be open-minded on the PEG matter, and if the need be there- do it.
And, as Dr. Mary alluded to in her post, Lord knows how harsh H&N treatment can be for some people. I know this thread will not close the matter as being somewhat controversial, but I do hope maybe a new patient might stumble upon it and venture to ask their ENT or Rad/Onco Dr about it before treatment starts, and get the danged PEG installed, and it will make the same kinda difference as it did with me.
Again, thank you all. And-
Believe
kcass
I was never offered the uses of getting a PEG tube and believe me it was to me the very hard way. Just wish I knew then what I know now.
Good post Kent
Hondo0 -
Thanks-Hondo said:To PEG or not to PEG
I was never offered the uses of getting a PEG tube and believe me it was to me the very hard way. Just wish I knew then what I know now.
Good post Kent
Hondo
Tim. Compliment from you is high praise, indeed.
And, if I might, I wanna highlight something Bob said in regards to the Dr's relating to just what we go thru, as that might be very much part of the PEG issue. Yes, it does pad the wallets of all involved in the placement, and feedings, but it does make one wonder if they really do understand just how difficult intake of food and water the traditional way can get. Kinda makes one wonder about Drs who have gone thru H&N, and what they had done in regards to the PEG, or really would make sure is done for them if there was any chance the PEG would be needed, or even just to make it easier.
kcass0 -
Car Payment....Kent Cass said:Thanks-
Tim. Compliment from you is high praise, indeed.
And, if I might, I wanna highlight something Bob said in regards to the Dr's relating to just what we go thru, as that might be very much part of the PEG issue. Yes, it does pad the wallets of all involved in the placement, and feedings, but it does make one wonder if they really do understand just how difficult intake of food and water the traditional way can get. Kinda makes one wonder about Drs who have gone thru H&N, and what they had done in regards to the PEG, or really would make sure is done for them if there was any chance the PEG would be needed, or even just to make it easier.
kcass
Actually I use to tease my rads MD, especially at the two follow-ups (six months and one year) post rads....tease him of needing a car payment.
As a side note, my ENT was the one that talked with me about the PEG...making me aware, and also that if things went south, that was always an option.
MY rads MD, never mentioned it once...he just saw me once a week and asked me, "well on a scale from 1 - 10, where are you and the pain in your throat, swallowing etc"....
While I'd never wish this on anyone, it always brings to reality that nobody truely relates or can understand what we go through without going through it yourself.....
Best,
John0 -
Waiting for DougKent Cass said:Yes-
I thank all of you who've responded in this thread. And, yes- I stand corrected, Sweet, and I apologize. Still, with what became of your mouth and esophagus, your Doctors would have taken your choosing in the matter away, girl, so please give me a 7% okay for your not really having been given a choice.
And Bob, I am sorry to hear you fell into the 1%. I know Sweet, and others, have expressed complaints with the experience, and nobody much cares for how they physically are, including me. Still, I gotta tell you my G-tube was just about the best friend I've ever had, there for a couple months.
And John, as always- thank you. I agree with all you say. I got no problems being branded the PEG Advocate, but I'm not saying everyone should get one, either. The ENT and Rad/Onco should be the ones to best advise the individual patient, as I've said, because they're the ones who know the C and treatment specs that said patient will have to live with. And it is good for you to be here to let people know that it is possible some will truly not need one, and at the same time telling people that if their Drs advise that it's the smart thing to do, then get the PEG. We are all different, to be sure, and all Drs and patients should be open-minded on the PEG matter, and if the need be there- do it.
And, as Dr. Mary alluded to in her post, Lord knows how harsh H&N treatment can be for some people. I know this thread will not close the matter as being somewhat controversial, but I do hope maybe a new patient might stumble upon it and venture to ask their ENT or Rad/Onco Dr about it before treatment starts, and get the danged PEG installed, and it will make the same kinda difference as it did with me.
Again, thank you all. And-
Believe
kcass
I was waiting for Doug to answer your question about his weight loss, but he's been busy. He was mostly unable to eat because of throwing up all the time ("extreme nausea" just sounds too mild - we had barf cups in every room and the kids would just grab one automatically for him when they saw the signs). His first week after chemo was bad - he did not do well even with the best of the antinauseas taken with clockwork precision. He had a reasonably good week and then started trying out pain drugs - the pain from radiation was not that bad, but his doctor wanted him to find out what worked best before it did get bad. They all made him throw up - there went another week as we did, "this one should work" every day or so. Then he had blood clots and spent 2 days in the hospital - they are surprisingly bad at coming up with high calorie soft foods. Then low WBC - a lot of time spent getting tests, getting shots and waiting in offices. . . and not eating much.
At this point he'd lost about 5-8 lbs - mostly his love handles and no one was worried. Then it was time for the second chemo. Worse than the first. He pretty much threw up for 2 weeks straight and then for another 2 weeks he could barely keep more than a few ounces down at a time. He lost about 20 more lbs - we tried a few days in the hospital but that just made it worse (he had an allergic reaction to the IV feeding). We finally hit the right combo of antinausea drugs (both of them as last resorts) and he was able to start keeping food down again.
The PEG really wouldn't have helped during most of that. He ramped up to 2800 calories/day over a period of 2 weeks by mouth once he stopped throwing up - it would not have been safe to do it any faster anyway. I won't spill the beans about just how much weight he gained back in the last 6 months, but I highly doubt he could have done it faster with the PEG.
So, I'm glad he didn't have it - it would not have saved any unnecessary suffering.0 -
My Meds....DrMary said:Waiting for Doug
I was waiting for Doug to answer your question about his weight loss, but he's been busy. He was mostly unable to eat because of throwing up all the time ("extreme nausea" just sounds too mild - we had barf cups in every room and the kids would just grab one automatically for him when they saw the signs). His first week after chemo was bad - he did not do well even with the best of the antinauseas taken with clockwork precision. He had a reasonably good week and then started trying out pain drugs - the pain from radiation was not that bad, but his doctor wanted him to find out what worked best before it did get bad. They all made him throw up - there went another week as we did, "this one should work" every day or so. Then he had blood clots and spent 2 days in the hospital - they are surprisingly bad at coming up with high calorie soft foods. Then low WBC - a lot of time spent getting tests, getting shots and waiting in offices. . . and not eating much.
At this point he'd lost about 5-8 lbs - mostly his love handles and no one was worried. Then it was time for the second chemo. Worse than the first. He pretty much threw up for 2 weeks straight and then for another 2 weeks he could barely keep more than a few ounces down at a time. He lost about 20 more lbs - we tried a few days in the hospital but that just made it worse (he had an allergic reaction to the IV feeding). We finally hit the right combo of antinausea drugs (both of them as last resorts) and he was able to start keeping food down again.
The PEG really wouldn't have helped during most of that. He ramped up to 2800 calories/day over a period of 2 weeks by mouth once he stopped throwing up - it would not have been safe to do it any faster anyway. I won't spill the beans about just how much weight he gained back in the last 6 months, but I highly doubt he could have done it faster with the PEG.
So, I'm glad he didn't have it - it would not have saved any unnecessary suffering.
Can't remember for sure what you guys tried, and I didn't really have any of that go on either...one small bout of being slighly de-hydrated (only took once).
EMEND, awesome drug for the three big rounds of multiple chemo meds. I never got sick at all....the in-between was primarily Zofran if I did feel a little qweasy.
Neulasta, anothe really good med, given the week after the heavy doses of mulitple chemo meds. Neulasta helps to stimulate the bone marrow and promote the growth of white blood cells (neutrophils) in your body, helping your body fight against infection.
JG0 -
Did both and moreSkiffin16 said:My Meds....
Can't remember for sure what you guys tried, and I didn't really have any of that go on either...one small bout of being slighly de-hydrated (only took once).
EMEND, awesome drug for the three big rounds of multiple chemo meds. I never got sick at all....the in-between was primarily Zofran if I did feel a little qweasy.
Neulasta, anothe really good med, given the week after the heavy doses of mulitple chemo meds. Neulasta helps to stimulate the bone marrow and promote the growth of white blood cells (neutrophils) in your body, helping your body fight against infection.
JG
Did the Emend both times - I hate to think of how bad it would have been without it. The nausea got lots worse day 5-6, which is when the Emend stops being effective, so I'm assuming it did help. Did Zofran and lots of others - pretty much everything available, including Marinol. At one point, we were spending a good 20 minutes each day discussing drugs with his doctors (I do sorta miss that part). It was fairly frustrating, as you can imagine - I had always felt anything could be fixed with the right drugs. I read the posts of the folks who were able to control their nausea, and am envious; I'm sure glad that time is over.
He got the Neulasta shot after the low WBC showed up - it did work (just sucked up lots of time because of various administrative/insurance issues). His doctor seems to only give it as needed.
Nope, not really missing those days.0 -
ExpenseDrMary said:Did both and more
Did the Emend both times - I hate to think of how bad it would have been without it. The nausea got lots worse day 5-6, which is when the Emend stops being effective, so I'm assuming it did help. Did Zofran and lots of others - pretty much everything available, including Marinol. At one point, we were spending a good 20 minutes each day discussing drugs with his doctors (I do sorta miss that part). It was fairly frustrating, as you can imagine - I had always felt anything could be fixed with the right drugs. I read the posts of the folks who were able to control their nausea, and am envious; I'm sure glad that time is over.
He got the Neulasta shot after the low WBC showed up - it did work (just sucked up lots of time because of various administrative/insurance issues). His doctor seems to only give it as needed.
Nope, not really missing those days.
The Neulasta is somewhere in the neighborhood of $1500 - $3000 per injection.....0 -
Up the Down StaircaseDrMary said:Did both and more
Did the Emend both times - I hate to think of how bad it would have been without it. The nausea got lots worse day 5-6, which is when the Emend stops being effective, so I'm assuming it did help. Did Zofran and lots of others - pretty much everything available, including Marinol. At one point, we were spending a good 20 minutes each day discussing drugs with his doctors (I do sorta miss that part). It was fairly frustrating, as you can imagine - I had always felt anything could be fixed with the right drugs. I read the posts of the folks who were able to control their nausea, and am envious; I'm sure glad that time is over.
He got the Neulasta shot after the low WBC showed up - it did work (just sucked up lots of time because of various administrative/insurance issues). His doctor seems to only give it as needed.
Nope, not really missing those days.
OK, as my lovely wife, "love of my life" has said, the problem for some weeks was not that I couldn't get anything down but that I couldn't keep it there. It wasn't fun, but I continued to be able to swallow and chew. Believe me, it then hurt more coming up than it did going down. We found that magic mouthwash was also very good ex post vomito and not just as anesthesia for eating. I was throwing up so much that a tube would only have assured a continuous supply of ammunition which I didn't need.
As Mary mentions, when I was hospitalized, they tried to feed me with an IV. The reaction was so immediate and severe that I had to scream for the nurse to pull the plug or I would pull it out myself and to please give me the anti-allergic shot now. I was starting to go into shock and it was one of those "Doctors to Room 401. Emergency!" situations. So that day we found another way in which I wouldn't be "fed". Eventually, only by controlling the nausea could we get me nutrition.
Mary also wants me to tell you that today is six months from treatment (rads and chemo) for me. In February I had a neck dissection (26 lymph nodes) which set me back a bit but yesterday I weighed myelf and could proudly say that I have re-gained more than 25 pounds from the lowest point and it is pretty much all muscle. I am back to playing hockey three days a week and working hard outside and traveling overseas for work to boot. Sure, I am still "foobricating" for lack of saliva. Life is not perfect. But life is good and getting better. Doug0 -
verySkiffin16 said:Expense
The Neulasta is somewhere in the neighborhood of $1500 - $3000 per injection.....
What a battle with the insurance company to get it. I even had to be briefly "admitted" to the oncology ward on a Sunday just so they could give it to me.
(Neverthless, I have to say that, perhaps with that one exception which took a lot of cajoling, my insurance company was "marvelous". We paid lots of co-pays and this and that but even after getting the discounts they paid enormous sums for my treatment and they never gave us a hassle. We mostly got showers of Explanation of Benefits but no grief we didin't need. YMMV, obviously.)
Doug0 -
ExpenseGoalie said:Up the Down Staircase
OK, as my lovely wife, "love of my life" has said, the problem for some weeks was not that I couldn't get anything down but that I couldn't keep it there. It wasn't fun, but I continued to be able to swallow and chew. Believe me, it then hurt more coming up than it did going down. We found that magic mouthwash was also very good ex post vomito and not just as anesthesia for eating. I was throwing up so much that a tube would only have assured a continuous supply of ammunition which I didn't need.
As Mary mentions, when I was hospitalized, they tried to feed me with an IV. The reaction was so immediate and severe that I had to scream for the nurse to pull the plug or I would pull it out myself and to please give me the anti-allergic shot now. I was starting to go into shock and it was one of those "Doctors to Room 401. Emergency!" situations. So that day we found another way in which I wouldn't be "fed". Eventually, only by controlling the nausea could we get me nutrition.
Mary also wants me to tell you that today is six months from treatment (rads and chemo) for me. In February I had a neck dissection (26 lymph nodes) which set me back a bit but yesterday I weighed myelf and could proudly say that I have re-gained more than 25 pounds from the lowest point and it is pretty much all muscle. I am back to playing hockey three days a week and working hard outside and traveling overseas for work to boot. Sure, I am still "foobricating" for lack of saliva. Life is not perfect. But life is good and getting better. Doug
Total billed (before my company contract price) was in the neighborhood of $260,000 for 2009. Negotiated price was $96, 000, my total out of pocket....$3,750.
Definitely can not complain about my insurance.... When I hear people where I work complain about insurance I let them know of my expereinces with it.
Also, sick time...weveral burn their sick time as soon as the earn it... I had over 1200 hours on the books...definitely something good not to be abused.
JG0 -
HmmmmSkiffin16 said:Expense
Total billed (before my company contract price) was in the neighborhood of $260,000 for 2009. Negotiated price was $96, 000, my total out of pocket....$3,750.
Definitely can not complain about my insurance.... When I hear people where I work complain about insurance I let them know of my expereinces with it.
Also, sick time...weveral burn their sick time as soon as the earn it... I had over 1200 hours on the books...definitely something good not to be abused.
JG
Well, I'm not sure about the direction this has headed, but I did ask if Doug's condition had been because of nausea, and I thank you both for answering that. In a way, this is another example of how different we all are. I, too, was also given the Emend before both of my 96-hour Chemo sessions with the two pumps/session, and also think there was another something they did, and was also prescribed Compazine in the two forms. Can honestly say that nausea was not a problem for me, which is the difference between us. Twice I woke in the morning with the heaves after sleeping around 4-hours early in tx, and it was obvious that bad mucous was the cause. Did take the Compazine pills for a couple days, but that was about it for the nausea. Did make adjustments, which likely helped in prevention, but it's hard to say if such was significant.
Another possibility for my lack of nausea, perhaps, is that I was getting all my intake thru the tube. Until now, I hadn't really thought of that. But, from the end of the 1st week to the end of the 8th of tx- all my intake was thru the PEG with Jevity 2.0, except for ice and sipping of water, and chopped-up pills and the liquid Morph. SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY, OR SIMILAR, VIA THE PEG? Again, the only vomits I got was right when I woke-up in the AM in bed. Of course, this is just my experience, but maybe one new truthful advantage to the PEG. Also, and I must stress this, like a lot of us I was spitting frequently, and carried a small bucket with me when I left the house, so I actually got very little substances in the stomach that had come into contact with the treated areas of my mouth and throat. Would be interested in other's experiences along these lines, so:
DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
Also, since the discussion touched on the cost aspects, my out of pocket for the PORT and PEG placements, two pre-tx biopsies, numerous Dr. visits, and the treatment, came to $1500! I kept the billings itemized on paper for my records, and the actual provider charges came to $178,000, but those providers were content with only getting around 1/3 of that from United Healthcare, which still blows my mind.
And, again, DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
kcass0 -
SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY,Kent Cass said:Hmmmm
Well, I'm not sure about the direction this has headed, but I did ask if Doug's condition had been because of nausea, and I thank you both for answering that. In a way, this is another example of how different we all are. I, too, was also given the Emend before both of my 96-hour Chemo sessions with the two pumps/session, and also think there was another something they did, and was also prescribed Compazine in the two forms. Can honestly say that nausea was not a problem for me, which is the difference between us. Twice I woke in the morning with the heaves after sleeping around 4-hours early in tx, and it was obvious that bad mucous was the cause. Did take the Compazine pills for a couple days, but that was about it for the nausea. Did make adjustments, which likely helped in prevention, but it's hard to say if such was significant.
Another possibility for my lack of nausea, perhaps, is that I was getting all my intake thru the tube. Until now, I hadn't really thought of that. But, from the end of the 1st week to the end of the 8th of tx- all my intake was thru the PEG with Jevity 2.0, except for ice and sipping of water, and chopped-up pills and the liquid Morph. SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY, OR SIMILAR, VIA THE PEG? Again, the only vomits I got was right when I woke-up in the AM in bed. Of course, this is just my experience, but maybe one new truthful advantage to the PEG. Also, and I must stress this, like a lot of us I was spitting frequently, and carried a small bucket with me when I left the house, so I actually got very little substances in the stomach that had come into contact with the treated areas of my mouth and throat. Would be interested in other's experiences along these lines, so:
DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
Also, since the discussion touched on the cost aspects, my out of pocket for the PORT and PEG placements, two pre-tx biopsies, numerous Dr. visits, and the treatment, came to $1500! I kept the billings itemized on paper for my records, and the actual provider charges came to $178,000, but those providers were content with only getting around 1/3 of that from United Healthcare, which still blows my mind.
And, again, DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
kcass
I only had rads. Cannot remember what anti nausea drug I was taking, but I did still have trouble with vomiting. I did hold my weight thru rads, but then a couple weeks out was when I had extreme nausea and everything I put in came right back out. That's how I lost the 40 lbs. Finally fixed the vomiting issue by going super slow with using the pump over night. I used nutren 1.50 -
hmmmKent Cass said:Hmmmm
Well, I'm not sure about the direction this has headed, but I did ask if Doug's condition had been because of nausea, and I thank you both for answering that. In a way, this is another example of how different we all are. I, too, was also given the Emend before both of my 96-hour Chemo sessions with the two pumps/session, and also think there was another something they did, and was also prescribed Compazine in the two forms. Can honestly say that nausea was not a problem for me, which is the difference between us. Twice I woke in the morning with the heaves after sleeping around 4-hours early in tx, and it was obvious that bad mucous was the cause. Did take the Compazine pills for a couple days, but that was about it for the nausea. Did make adjustments, which likely helped in prevention, but it's hard to say if such was significant.
Another possibility for my lack of nausea, perhaps, is that I was getting all my intake thru the tube. Until now, I hadn't really thought of that. But, from the end of the 1st week to the end of the 8th of tx- all my intake was thru the PEG with Jevity 2.0, except for ice and sipping of water, and chopped-up pills and the liquid Morph. SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY, OR SIMILAR, VIA THE PEG? Again, the only vomits I got was right when I woke-up in the AM in bed. Of course, this is just my experience, but maybe one new truthful advantage to the PEG. Also, and I must stress this, like a lot of us I was spitting frequently, and carried a small bucket with me when I left the house, so I actually got very little substances in the stomach that had come into contact with the treated areas of my mouth and throat. Would be interested in other's experiences along these lines, so:
DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
Also, since the discussion touched on the cost aspects, my out of pocket for the PORT and PEG placements, two pre-tx biopsies, numerous Dr. visits, and the treatment, came to $1500! I kept the billings itemized on paper for my records, and the actual provider charges came to $178,000, but those providers were content with only getting around 1/3 of that from United Healthcare, which still blows my mind.
And, again, DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?
kcass
With respect to insurance, I am officially the million dollar man after head/neck cancer surgery, rads and chemo, and lung cancer lobectomy, a month in hospital for staph infection (MSSA), and more chemo, and my insurance has been sterling (it probably helps that it comes via my wife's employement as registered nurse, so we are essentially giving back to her company).
With respect to vomiting, etc, following my h/n surgery I was in radiation therapy AND chemotherapy (cisplatin) and as I indicated in an earlier response, I DID have extreme nausea following chemo (but not rads, as far as I can recollect). I, too, had compazine to rely on, along with phenergin, (sp?) I believe it was, and some other anti-nausea meds, none of which really worked all of the time, but some of which worked some of the time (to paraphrase Abe Lincoln, I believe). And when they didn't work, if I was quick enough, I had the valve on the end of my tube, as also indicated above, to relieve myself of that nasty through-the-mouth stuff.
I was not always fast enough.
I used Jevity 1.2 and Jevity 1.5, by the way, as well as a 2.0 called TwoCal that my nutritionist dissuaded me from, saying it did not have enough of what I needed (the TwoCal, that is).
By the way, I did not know there was some debate going on about to PEG or not to PEG. It seems a no-brainer. You either need it or you don't, and if you don't believe your doctor when he or she tells you that you do (or don't) then you should get a new doctor, one that you trust (but not, I submit, one that just tells you what you want to hear).
Take care,
Joe0 -
Thanks-sweetblood22 said:SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY,
I only had rads. Cannot remember what anti nausea drug I was taking, but I did still have trouble with vomiting. I did hold my weight thru rads, but then a couple weeks out was when I had extreme nausea and everything I put in came right back out. That's how I lost the 40 lbs. Finally fixed the vomiting issue by going super slow with using the pump over night. I used nutren 1.5
Sweet. Figured it was a bit of a longshot, and it was something that just crossed me weewittle mind, but it is something that always did confound me a bit- that I never really had much of a nausea problem, and only took a few Compazine pills early in treatment; whereas so many others have problems with it that it does become a major issue. Know both of our mouths took major hits, and your's was worse for longer than mine was. Maybe I was just lucky with the nausea thing. Would have been majorly cool if I'd stumbled upon a way to eliminate the N problem, though.
kcass0 -
I agree. I believe that the
I agree. I believe that the PEG is an essential part of treatment especially if the doctor has insisted that you have it. I need my husband to read these post. I would much rather him have it in case he needs it than to go to the ER for lack of nutrition and dehydration.
Thanks!0 -
Joesoccerfreaks said:hmmm
With respect to insurance, I am officially the million dollar man after head/neck cancer surgery, rads and chemo, and lung cancer lobectomy, a month in hospital for staph infection (MSSA), and more chemo, and my insurance has been sterling (it probably helps that it comes via my wife's employement as registered nurse, so we are essentially giving back to her company).
With respect to vomiting, etc, following my h/n surgery I was in radiation therapy AND chemotherapy (cisplatin) and as I indicated in an earlier response, I DID have extreme nausea following chemo (but not rads, as far as I can recollect). I, too, had compazine to rely on, along with phenergin, (sp?) I believe it was, and some other anti-nausea meds, none of which really worked all of the time, but some of which worked some of the time (to paraphrase Abe Lincoln, I believe). And when they didn't work, if I was quick enough, I had the valve on the end of my tube, as also indicated above, to relieve myself of that nasty through-the-mouth stuff.
I was not always fast enough.
I used Jevity 1.2 and Jevity 1.5, by the way, as well as a 2.0 called TwoCal that my nutritionist dissuaded me from, saying it did not have enough of what I needed (the TwoCal, that is).
By the way, I did not know there was some debate going on about to PEG or not to PEG. It seems a no-brainer. You either need it or you don't, and if you don't believe your doctor when he or she tells you that you do (or don't) then you should get a new doctor, one that you trust (but not, I submit, one that just tells you what you want to hear).
Take care,
Joe
I thank you for your response. Figured it was a longshot, but worth a try in our quest for progress.
Yes, I agree 100% with it being the Dr's decision with the patient's consent. Perhaps, Joe, the only real problem is if one of us tries to influence a new patient into choosing in the to-PEG, or not to-PEG, matter contrary to the advice the new patient's Drs have given them. And I must admit a bit of a bias on the pro-PEG side of this, but can see that it is not my place to advise on limited knowledge of the C specs of another- just as it is not for anyone to advise against a PEG on the same limited knowledge. Maybe that's what every one of us should take very serious, including me on the pro-side, as well as whomever on the con-side.
More than you probably know, Joe, I do thank you very much.
Believe
kcass0
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