has anyone NOT used a peg?
THanks,
Jen
Comments
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Hi Jen
I did not use the PEG tube and lost about 50lbs in the process, No joking the pain is like the worse sore throat you will ever have and it will not go away for a months. Toughing liquids like smoothies, high protein shakes down to keep muscles working is a great idea but will not always work for everyone, my wife had a hard time with me, all she could get in me was some watered down grits. If I knew then what I knew now I would have had a PEG from the beginning
Welcome to CSN take care and keep posting0 -
Hi,
I have Base Of Tongue
Hi,
I have Base Of Tongue SCC with mets to lymph nodes on both sides of my neck. Two surgeries before this entire mess started. My radiation oncologist recommended against the PEG. Turns out this was because she knew nothing about it. My chemo oncologist recommended for it. My treatment required eight weeks of radiation and three rounds of chemo. I decided to tough it out without one, in part because I was concerned about the PEG installation surgery.
An excess of throat mucus seriously interfered with my ability to swallow the thick shakes, and most soups don't provide enough nutrition. Four weeks into my treatment, I got to a point where I wasn't able to drink enough to maintain my weight.
I haven't seen mention of this elsewhere on this board, but I discovered after two rounds of chemo, that anything one eats during chemo, one immediately loses all interest in eating after that round of chemo is over. So, after drinking my ensure shakes during chemo, they were very unpalatable after. So, it became nearly impossible for me to eat anything.
I had the PEG installed after four weeks of treatment. It was an endoscopic outpatient procedure, that took an afternoon and did not even require anesthesia. I was able to begin using it almose immediately, and was sent home with a pump that allowed me to do slow feedings over night. It has been a real godsend. My weight has stabilized and is going back up.
I sip ice water, lukewarm green teas, and iced teas all day long. I have water on my nightstand, and typically get through about sixteen ounces during the night. My swallower is still fully functional, with 13 radiation treatments to go. I highly recommend the tube. My fears and concerns about it were completely unfounded.
Deb0 -
PEG is highly recommended
*Maybe* your husband will do alright without the PEG but the resistance to it is foolish IMHO. What will happen to your husband's throat no one here can describe in ways that will probably change his mind, but he will be in severe pain, he will have a lot of mucus, and he will have great trouble swallowing. He may lose enough weight that an emergency PEG procedure is required.
If he is that tough where, prior to knowing exactly how he's going to be affected, he feels he can take the worst the treatment has to dish out, my hat is off to him. My Dr said as much to me that I probably wouldn't need the PEG. I changed my mind when I could no longer eat and was losing a couple of pounds a day. I hope it does not come to that for your husband.
Best of Luck,
Mick0 -
Hi Jen, another thought and a hint on PEG
Hi Jen, (I just posted this reply in Flakey_Flakes thread, so for any of you who have seen it there, please feel free to move on, but it's more applicable and may be helpful for Jen)
Hi Jen, Because I don't take pain well--I'll take what pain I can't avoid, but only that. Due to the advice on this board I got my tube in two days before I started my run of 35 rads and 3 Cisplaten chemos. Base of tongue cancer with spread to two lymph nodes, same side.
Two problems with not having a tube: 1. It starts to get painful to the point you simply can't eat without one; 2. Once the taste buds stop working, the stuff you're trying to force down tastes like bad-tasting goo, regardless of what it is. Many thoughtful people have gone Hi Jen,to great lengths to create smoothies and shakes that combine the calories and nutrition of a Christmas turkey in a velvet smooth drink, only to find they or the person under their care just can't get it down.
My peg tube is very little trouble. First week of having it I would dress the area around it with gauze pad, and tape or cloth adhesive tape, then secure it to my torso with basic medical adhesive tape. After a short time my torso began to resemble a long negelected hiway billboard, with remnants of the standard tape creating a criss-crossed jumble of the securing adhesive. At that point I bought an extra-wide 4" roll of elastic Ace bandage. I measured a length that would snug itself around my torso just below my ribs, cut it, then folded it in half length wise. To finish I used two safty pins to attach the two ends. I still use the cloth tape and standard gauze pads to dress my PEG entry point, but simply lay the tube in the open-topped "pouch" I wear to make securing the tube and fitting easy--and none of the tough adhesive residue. Sounds like you are asking good questions and getting the answers.
By the way, the insertion is a piece of cake. Maybe you could ask your radiation oncologists the value of "toughing it out." Barring atypical surprises, I can't think of any.
My toughts are with you and your strong and willfull guy.
Hal0 -
Not advisable j3rey
I refused PEG, was treated for 2 Lymph nodes in the neck. Three months rads and cysplatin.
I could not eat anything, the smell of food was sickening, thrush (4X), no saliva, metallic taste. Although I finished TX in October 2009, the side effects continued through the holidays. January 2010 -119 lbs. February - 110lbs. I am 5'9" tall.
Looking back, I would have gotten the PEG. Hindsight is 20/20. It would have saved me from also losing all my muscle mass. I spent many days in bed, because if I did expend any energy, it exhausted me because I was living on H20, and Ensure.
I just recently gained 13lbs in 5 weeks, because I realized, after this weight loss, your organs will begin to shut down. So I saw a nutritionist, and am eating allllll day!
I hate to paint a gloomy picture, but I don't want you to see your husband waste away, and you feel helpless.
I wish you well in your decision, and may God bless you through this journey. Patty0 -
I didn't have a PEG & MOFFIT CENTER QUESTION
Hi Jen,
I didn't have a PEG, it wasn't really discussed with me other than they felt that I didn't need to worry about having one. I think a lot probably has to do with your condition, weight, medical history, etc....going in to this ordeal. I am 6' tall and was 275# going in, so I was generously nourished to start, LOL.
That was always my joke at the time, "Other than having Cancer, I'm in perfect Health".
I had STG III right tonsil and a lymphnode SCC HPV+. I went through a similar regime' as most here. Nine weeks (3 week cycles) of Cisplaten, Taxotere and 5FU, then seven weeks of concurrent Carboplaten and 35 rads...
I lost about 35 - 40#, the last few weeks of rads and the few after being the worse. Like HONDO, I was mainly getting my calories a that time though Ensure Plus. That and even water was only doable after using some numbing solution, liquid meds, or crushed meds with a little water after the initial numbing solution.
Some here swear by a PEG, but for me I didn't have one and it didn't bother me. I had faith in my medical team, if it would have been requested/suggested by them, I would have had it done.
I saw your reference to Moffit Center (Tampa I presume). Where are you located, I'm in Lakeland and had my treatment here with The Center for Cancer Care & Research Watson Clinic....they are also affiliated with The Moffit Center.
Good Luck, God Bless,
John0 -
I should have gotten a pegpattyanny said:Not advisable j3rey
I refused PEG, was treated for 2 Lymph nodes in the neck. Three months rads and cysplatin.
I could not eat anything, the smell of food was sickening, thrush (4X), no saliva, metallic taste. Although I finished TX in October 2009, the side effects continued through the holidays. January 2010 -119 lbs. February - 110lbs. I am 5'9" tall.
Looking back, I would have gotten the PEG. Hindsight is 20/20. It would have saved me from also losing all my muscle mass. I spent many days in bed, because if I did expend any energy, it exhausted me because I was living on H20, and Ensure.
I just recently gained 13lbs in 5 weeks, because I realized, after this weight loss, your organs will begin to shut down. So I saw a nutritionist, and am eating allllll day!
I hate to paint a gloomy picture, but I don't want you to see your husband waste away, and you feel helpless.
I wish you well in your decision, and may God bless you through this journey. Patty
I should have gotten a peg and still might.
It has been 6 weeks since radiation stopped and for a few weeks I could nibble on a few things here and there, gradually it has gotten worse. I am getting sleepier and sleepier and colder all the time. Today I took off work for the first time since rad week 6. I am drinking 1 boost a day, maybe some jello. I am exhausted and 89 pounds. I am too tired to try to figure out what to do. Seems to be a vicious cycle.
I would get the tube if I were you
Stacey0 -
Patty Photo Changepattyanny said:Not advisable j3rey
I refused PEG, was treated for 2 Lymph nodes in the neck. Three months rads and cysplatin.
I could not eat anything, the smell of food was sickening, thrush (4X), no saliva, metallic taste. Although I finished TX in October 2009, the side effects continued through the holidays. January 2010 -119 lbs. February - 110lbs. I am 5'9" tall.
Looking back, I would have gotten the PEG. Hindsight is 20/20. It would have saved me from also losing all my muscle mass. I spent many days in bed, because if I did expend any energy, it exhausted me because I was living on H20, and Ensure.
I just recently gained 13lbs in 5 weeks, because I realized, after this weight loss, your organs will begin to shut down. So I saw a nutritionist, and am eating allllll day!
I hate to paint a gloomy picture, but I don't want you to see your husband waste away, and you feel helpless.
I wish you well in your decision, and may God bless you through this journey. Patty
I like your new photo Patty....0 -
Hi JohnSkiffin16 said:I didn't have a PEG & MOFFIT CENTER QUESTION
Hi Jen,
I didn't have a PEG, it wasn't really discussed with me other than they felt that I didn't need to worry about having one. I think a lot probably has to do with your condition, weight, medical history, etc....going in to this ordeal. I am 6' tall and was 275# going in, so I was generously nourished to start, LOL.
That was always my joke at the time, "Other than having Cancer, I'm in perfect Health".
I had STG III right tonsil and a lymphnode SCC HPV+. I went through a similar regime' as most here. Nine weeks (3 week cycles) of Cisplaten, Taxotere and 5FU, then seven weeks of concurrent Carboplaten and 35 rads...
I lost about 35 - 40#, the last few weeks of rads and the few after being the worse. Like HONDO, I was mainly getting my calories a that time though Ensure Plus. That and even water was only doable after using some numbing solution, liquid meds, or crushed meds with a little water after the initial numbing solution.
Some here swear by a PEG, but for me I didn't have one and it didn't bother me. I had faith in my medical team, if it would have been requested/suggested by them, I would have had it done.
I saw your reference to Moffit Center (Tampa I presume). Where are you located, I'm in Lakeland and had my treatment here with The Center for Cancer Care & Research Watson Clinic....they are also affiliated with The Moffit Center.
Good Luck, God Bless,
John
Robert and Carol Weissman Cancer Center is the name of our center in Stuart, Florida.
It is nice to know that someone got through this without a PEG. Thank you for your response. I am wondering how your swallowing is doing? It does seem to make sense that if you can do it (and I guess that's a big if), your swallowing mechanisms will fair better to keep them in use.
Thanks,
Jen0 -
Peg ?Skiffin16 said:Patty Photo Change
I like your new photo Patty....
Jen
I would have all the out patient surgeries done before treatment starts. I had my port put in and later after the weight srarted coming off did I have the peg put in. I would have it put in now and even if he can eat, he can supplement with ensures etc. To try and keep the weight up
My veins dried up after the third round of chemo, so my port was a lifesaver. Mine was a dual port for both chemo & hydration/blood draws. I still needed IVs for the CTs
Prayers & Best Wishes
Dave0 -
Thanks Skiffin!Skiffin16 said:Patty Photo Change
I like your new photo Patty....
Lol! The other pic was taken the month I was diagnosed.
We went to Ocean Grove Beach on Saturday, and me and my Sis took silly pics at the beach. Had a great day! Anyway, needed a new pic for the new me!
Thanks Skiffin ((hugs)) 0 -
It is a lovely picture!pattyanny said:Thanks Skiffin!
Lol! The other pic was taken the month I was diagnosed.
We went to Ocean Grove Beach on Saturday, and me and my Sis took silly pics at the beach. Had a great day! Anyway, needed a new pic for the new me! Thanks Skiffin ((hugs))
It is a lovely picture!0 -
Jen and PEGpattyanny said:Thanks Skiffin!
Lol! The other pic was taken the month I was diagnosed.
We went to Ocean Grove Beach on Saturday, and me and my Sis took silly pics at the beach. Had a great day! Anyway, needed a new pic for the new me! Thanks Skiffin ((hugs))
Bottom-line post, Jen. Yes, I am the advocate for PEGs, so I am somewhat pro-PEG biased, but I am also witness to the many experiences of others, and the common sense of it. H&N treatment, with the C somewhere in the area, means the ability to eat and/or swallow will be impacted, to whatever degree. Simply put- the PEG eliminates this impact by providing a different path for Nutrition to get into the stomach. Yes, it requires a surgery to install; and, yes, it is a bit of a nuissance; however, in the bad times of treatment there are many of us who realize the blessing a PEG is/was, and some of us have known it to be a critical part of our just getting thru treatment. To me- all who go thru H&N should have a PEG, but that is just my opinion. I got mine on 1/29/09, and still have- though on 5/4/10 I meet with a Surgeon to finally get it removed. Haven't used it in over a year, but still have in case of a return bout with the Big C- which is to say that though it is a nuissance, it is not that much of a nuissance.
This is my best advice to you, based on my experience, and common sense. You must understand that I didn't have a choice about the PEG, or Port, due to my Chemo delivery. And, yes, by the end of the first week of treatment I was getting all my Nutrition thu the PEG- all of it. And that lasted thru the end of week #8. But, my Chemo delivery was a little different than others here, in H&N, so put that in perspective to make the best decision possible for your husband.
You and he, Jen, are living a new Chapter in your life together. Historic, Jen. He can survive this, as we all have. The post-Chemo times do get rough, and the Drs. do need to provide what is needed to get thru those times, but those times are only rough times. He, and you, will get past them. Bring the only correct focus into the forefront- the Positive that he will survive the drive on this road he is about to travel. Stay focused on that one large fact, Jen. And to you, Jen- your husband's trial of survival is your test of love for him. Historic times, Jen, in your lives. Keep us informed, know that we are with you, and
Believe
kcass
kcass0 -
Hi Jen!
My rock head husband
Hi Jen!
My rock head husband has NOT used the tube. He was diagnosed with SCC stage IV last April.
They did induction chemo(which he did not tolerate well at all) then the neck dissection, then radiation. When he got to radiation, they decided to give chemo along with it, so they didnt want to give him a peg tube for fear of infection. This is where it gets confusing and frustrating- the dr.s always threatened him with the tube if he lost more that 40 lbs, yet sometimes they would ask us why he didnt have a tube!!! I finally went off on them and asked them to kindly get their act together and decide one way or another what they were doing. My husband opted not to get it. He had the neck dissection in July and there are 2 holes in his soft palate which hinders him from eating, because everything goes up his nose. If we had to do this over again, I would make him have the peg tube. You said that your husband is "willfull." Mine is too, and it has served him well with some issues, but he still looks like he is starving to death!! He has also had 1/4 of his lung removed at this point. His scans came up clear recently except for a spot on his tongue which they think is a radiation ulcer, not cancer. We wont know for another week about that. My advice to you is to keep proactive in your fight!! There are so many patients that these Dr.s treat daily that you can become a number quite easily. Dont let that happen! I would rather be known as a stickler for detail and have my husband alive than be a quiet little churchmouse and take what they give you. This may not be true of all Hospitals though. I dont mean to sound negative, but the hospital where he receives his treatment is so overwhelmed and busy, it looks like a beehive!! Hopefully, your husbands team of Dr.s are all on the same page and in agreement with the treatment.
I wish you well and hope you have a very short, positive journey!!! Feel free to vent- I wish I had known about this site a long time ago!- There are some wonderful people here and they will do their best to help and offer advice, prayers and support. Let me know how you guys are doing okay? God Bless!! Lori0 -
Swallowingj3rey said:Hi John
Robert and Carol Weissman Cancer Center is the name of our center in Stuart, Florida.
It is nice to know that someone got through this without a PEG. Thank you for your response. I am wondering how your swallowing is doing? It does seem to make sense that if you can do it (and I guess that's a big if), your swallowing mechanisms will fair better to keep them in use.
Thanks,
Jen
Everything is good to go. One thing that my doctors stressed was to utilize the swallowing muscles no matter how much discomfort. They felt and stressed that there are instances that if you tend to rely on not using those muscles or don't use them, that there is a possibility that you can lose the ability to swallow after treatment. I can only offer that which I was told.
So I made the effort to use my swallowing muscles. Even at my worst during the end of radiation and weeks after. When I was mainly surviving on Ensure Plus and water, I would still attempt to eat a few things mainly to use the muscles a little. I'd eat the jarred sliced DelMonte Peaches, and Canned Spinach (mainly because I like it)... Believe me, I'm not a stubborn fool either, I wasn't in extreme blood curdling pain. Did it hurt, yes. But I could manage it with preparatory meds, and warm showers worked wonders for me....
I didn't eat much else as I figured the Ensure Plus gave me more calories, minerals and vitamins than anything else I could consume in small amounts.
Since the pain solutions only lasted a few minutes, I wanted as much bang for the buck that I could handle in a short time.
In all honesty it really wasn't that bad for me.... I know there are some here that highly endorse the PEG. Since I didn't have it I can't say other than my experience. If I would have been so bad to not be able to consume any food or drink I'm sure it was always an option for my doctors. I was monitored very close during treatment as all of us are.
During the nine weeks of chemo, the first two weeks of each cycle I was in the center 2 - 3 times each week. During the concurrent, I was in everyday other than week-ends. Most of these days, other than chemo days, I drove myself there and back home.
Again, I can only speak for myself, and I have no problems or regrets on my treatment plan.
Like Kass, I also had the power port for all of my needs, chemo, hydration, meds, blood draws (although I had them use my vein if it was just for lab work).
John0 -
Patty Beach Photospattyanny said:Thanks Skiffin!
Lol! The other pic was taken the month I was diagnosed.
We went to Ocean Grove Beach on Saturday, and me and my Sis took silly pics at the beach. Had a great day! Anyway, needed a new pic for the new me! Thanks Skiffin ((hugs))
Glad you and your sis got out and about. It definitley looks like it did you good, great smile going on. I'm sure you had a great time, I'm happy that you could get away from everything and just enjoy the new you....
JG0 -
Wish I had
Hi Jen:
I was treated at MD Anderson Orlando for Stage IV SCC base of tongue and lymph nodes on both sides of my neck with 3 rounds of induction chemo and 35 radiation TX (at 70 cGy) concurrent with carboplatin. Understand what dose of radiation your husband will be getting, it's important to know. Over 55 cGY with concurent chemo will be tough. I was stubborn and refused the PEG. I was miserable at the end and swallowing was almost impossible. I started at 150 lbs and was 118 at the end and lost most of my muscle mass which at a year post tx I am still struggling to regain. There is no need to go through this. Get the PEG, I wish I had. Just because he has the PEG doesn't mean he can't continue to swallow and work those muscles.
By the way I had a neck dissection 2 weeks ago for a recurrence and I came back to work yesterday.
All the best,
Rick0 -
Rough RoadRick2924 said:Wish I had
Hi Jen:
I was treated at MD Anderson Orlando for Stage IV SCC base of tongue and lymph nodes on both sides of my neck with 3 rounds of induction chemo and 35 radiation TX (at 70 cGy) concurrent with carboplatin. Understand what dose of radiation your husband will be getting, it's important to know. Over 55 cGY with concurent chemo will be tough. I was stubborn and refused the PEG. I was miserable at the end and swallowing was almost impossible. I started at 150 lbs and was 118 at the end and lost most of my muscle mass which at a year post tx I am still struggling to regain. There is no need to go through this. Get the PEG, I wish I had. Just because he has the PEG doesn't mean he can't continue to swallow and work those muscles.
By the way I had a neck dissection 2 weeks ago for a recurrence and I came back to work yesterday.
All the best,
Rick
It's a rough road no matter, I also had 7000cGy or rads, whatever the unit is they measure, concuurent with Carboplaten. But in addition I had nine weeks of Cisplaten, Taxotere and 5FU.
Sorry to hear of your reoccurance, how long after the initial treatment did the reoccurance show?
Did you also have high or mulitple doses of chemo before or after the concurrent? Interesting the differing methods of treatment we all have for similar cancers.
Thanks for sharing your experience as well....
John0 -
PEGSkiffin16 said:Rough Road
It's a rough road no matter, I also had 7000cGy or rads, whatever the unit is they measure, concuurent with Carboplaten. But in addition I had nine weeks of Cisplaten, Taxotere and 5FU.
Sorry to hear of your reoccurance, how long after the initial treatment did the reoccurance show?
Did you also have high or mulitple doses of chemo before or after the concurrent? Interesting the differing methods of treatment we all have for similar cancers.
Thanks for sharing your experience as well....
John
Stacey, hang in there girl. Pattyanny love the new picture, you look awesome. Mick, I am glad to see your post, hope you are well.
As far as the peg tube goes, i had 30 radiation treatments and my side effects started very quickly. The pain I was in was unbearable at it's height. I could not eat or drink anything for months. I still have my PEG tube in for over a year. The radiation actually made my throat close and I have had two dillatations and I still can hardly swallow. I can drink some liquids, but I am pretty miserable because I will probably never eat normally again. My tongue still feels "scalded" and I am on 50mcg of Fentanyl.
I am sure I am pretty worse case senario, i am not trying to scare you, but I wish someone would have told me that this would be a possibility. When I went into radiation I was down a salivary gland due to the neck dissection, and then the radiation fried the other one.
I was down to 88lbs, and I have been struggling like mad to break 100lbs. I am 5'2" and was comfortable at 125 lbs before radiation. Not fat, but serious hourglass with tiny waist. I would recommend getting the tube. If you don't need it, you don't have to loose it. But the reality is a lot of head and neck cancer patients die of malnutrition. I was not going to get one. I was certain, till I read that fact. Then I decided I would rather be pro active vs. reactive in my approach. I am glad I put it in, I don't think I would have made it without one.
best of luck, glad you found the site.0 -
Sweets Back....sweetblood22 said:PEG
Stacey, hang in there girl. Pattyanny love the new picture, you look awesome. Mick, I am glad to see your post, hope you are well.
As far as the peg tube goes, i had 30 radiation treatments and my side effects started very quickly. The pain I was in was unbearable at it's height. I could not eat or drink anything for months. I still have my PEG tube in for over a year. The radiation actually made my throat close and I have had two dillatations and I still can hardly swallow. I can drink some liquids, but I am pretty miserable because I will probably never eat normally again. My tongue still feels "scalded" and I am on 50mcg of Fentanyl.
I am sure I am pretty worse case senario, i am not trying to scare you, but I wish someone would have told me that this would be a possibility. When I went into radiation I was down a salivary gland due to the neck dissection, and then the radiation fried the other one.
I was down to 88lbs, and I have been struggling like mad to break 100lbs. I am 5'2" and was comfortable at 125 lbs before radiation. Not fat, but serious hourglass with tiny waist. I would recommend getting the tube. If you don't need it, you don't have to loose it. But the reality is a lot of head and neck cancer patients die of malnutrition. I was not going to get one. I was certain, till I read that fact. Then I decided I would rather be pro active vs. reactive in my approach. I am glad I put it in, I don't think I would have made it without one.
best of luck, glad you found the site.
Welcome Back to us Sweet.....hope all is going as well as can be with you..... ~John0
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