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has anyone NOT used a peg?

j3rey
Posts: 56
Joined: Apr 2010

My husband has recently been diagnosed with SCC in left lymph node of his neck. MRI showed a possible primary in his throat. PET scan showed that it is contained to this area. He has had to have four teeth pulled prior to treatment and is scheduled for a neck dissection on Wednesday. His surgeon is supposed to be great at this. His radiation is to begin when he heals from surgery. Twice daily- I don't know the specifics but will sure find out. His rad.oncologist is associated with Moffitt here in Florida and is not promoting a tube. Says it is better to tough liquid (smoothies, high protein shakes whatever) down to keep muscles working. Will allow a certain amount of weight loss but after a certain point, will tube. My husband is a strong and willfull man. He does not want the tube. Has anyone NOT used the feeding tube and done oK? We are just starting out on this journey.
THanks,
Jen

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

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 posting

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I was tough and thought I could do with out it, it aaould have save alot of problems and time, but thought another hole. During one timme I was puking straight for 2 weeks and couldm't get any nutriention on, so i have lost a total of 68lbs, alot I agree/ I would have defitnetlty got the tube..Take Care Dennis

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

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.

Deb

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

*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,

Mick

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

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.

Hal

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

j3rey
Posts: 56
Joined: Apr 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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).

John

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

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

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

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
Stacey

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I like your new photo Patty....

Fire34
Posts: 350
Joined: Feb 2010

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
Dave

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

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))

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

It is a lovely picture!

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

kcass

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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....

JG

handl1983
Posts: 37
Joined: Mar 2010

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!! Lori

Rick2924's picture
Rick2924
Posts: 22
Joined: Jan 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Welcome Back to us Sweet.....hope all is going as well as can be with you..... ~John

Rick2924's picture
Rick2924
Posts: 22
Joined: Jan 2010

John:
They found my recurrance 14 months after I ended radiation. Before the radiation I had 3 cycles of induction chemo-72 hours each of Cisplatin, Taxotere and 5FU on an inpatient basis. I had 10 days off between each cycle. I had a selective neck dissection (levels II, III, IV). Path report looks good.
Rick

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

thanks, john. i am still having trouble posting. grrrrrrr. i am about ready to put my foot thru my lap top screen. @#$%^&*in thing! my sicilian temper doth boil over........

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Sicilian EH? Now I know what I like about you. Fuget about it.

Steve

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

LOL, you know my name is actually Guiseppi..although it's my last name some how....

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I went through 10 weeks of radiation with 10 simultaneous chemos without a PEG. I dropped from 230 pounds to 135 fully clothed. I am over 6'1" so it wasn't a good look. Because of the pain of swallowing, which I did daily, but even after radiation was over it was very painful and the amounts I was able to swallow were smaller each day. By the end I was taking in a single glass of Gatorade for a total of 70 calories.

I would agree that you would want to take in as much by mouth during treatment, but having the PEG as a backup when it is too painful is a good alternative. I wish I had it now that it is all behind me as I think I might have tolerated treatment a bit better if I was able to keep my strength up by getting in a decent amount of calories per day.

At one point one of the Rad Onc wanted to have the tube put in because I was losing too much weight, but I refused. If it gets to that point, please don't refuse and still get as much by mouth as possible but you can supplement with the tube. This will keep the muscles active but might limit the pain your husband may be while trying to swallow.

JULIA DRIVER
Posts: 1
Joined: Apr 2010

Hey JEN, I am currently in treatment for vocal cord cancer, SCC Stage 1. I have had 31 radiation treatments to my neck and I did not have a PEG. I have lost no weight and in my 7th week of treatment, I am still eating, just have to chew carefully and take it slow. I have not had to take much in the way of pain meds at all. Everyone reacts differently. I have a pretty high pain thresh hold and knew all along if I needed to, I could get a PEG at any time. I am aware that I fall in probably the 10% of people that breeze through this. My treatment is the IMRT, my lymph nodes in my neck were treated for 5 weeks, 5 days a week and now only my larynx is being treated in what is called the "boost". Feel like I am so close to completing treatment now, I would not put in a PEG and I have a few extra pounds I could afford to lose. A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Welcome, Julia. Glad to hear they caught your C very early, and you are doing so well. Reckon you woulda mentioned Chemo if you also got that, and you didn't- so you didn't. Must advise you that the standard of H&N is Chemo and Rads, and hope your ENT and Rad Dr. are correct in their diagnosis of your C condition. I truly do hope that is not due cause for concern with you going forward. Were you treated at a major cancer med center?

Please understand, Julia, that "real food," isn't an option for most of us during much of the time of our treatment, and some even beyond treatment. With my Chemo delivery, I wasn't given an option as to whether or not to get a PEG and Port- and they had to be installed before any treatment. I was told this with my very first Onco office visit, Julia, because of the Chemo delivery they had planned for me, with full H&N rads (20 places/session). I was also told I'd be on morphine. That was my very first office visit, Julia, and they had a real good idea where this would take me. And they were right. Real Food stopped being an option at the end of week #1. Pancakes did enter my life late in week #9, if I remember right. Nutrition is critical for all who go thru C&R, and the common sense of a PEG for the C&R of H&N is an easy thing to figure. Again, I am happy for you, and truly do hope your ENT is correct in his diagnosis of your C condition- as I'm sure we all are. As we all were happy for MaryRC, truly, we are happy for you, too, Julia.

kcass

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

I may end up with a PEG even at this late point, (6 weeks after rads)as it is SO hard to maintain nutrition. And I mean maintain in the wrong sense,as in not continue to lose weight. I was reading (did I see it here somewhere first?) that 20% of head and neck patients due of malnutrition rather than of their disease..
It is a lot harder than I thought it would be not to lose weight.
Stacey

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am thrilled that you are having minimal side effects with your radiation. That is beyond outstanding! I pray everyday that those in treatment are somehow spared the serious physical pain I went thru. I have never, ever in my life have been in more physical pain than when I went thru radiation. I am not a whimp. Prior to this experience I had never even taken anything stronger than an ibuprofen. I had a biopsy under my tongue that required 7 stitches and toughed it out without a pain killer. With my rads I was on 75mcgs of Fentanyl, and there were times I was delerious with pain.

I am not trying to be confrontational or anything, but I am sort of taking exception with:

"A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable."

Yes a great deal of surviving cancer is a great attitude and determination. I can assure you I am made of steel, and rocks; with everything I have been thru in my life I would have been toast years ago if I wasn't. BUT a body has physical limitations. People react different ways. When your throat closes because of radiation damage all the determination in the world will not help you swallow, believe me. There were times I had to stand over the sink because my mouth would not stop bleeding. I mean BAD. One day going home in the car the roof of my mouth slagged off in a sheet. Beyond painful. There was no way I could eat or drink.

I maintained my weight thru radiation and the complications came after. I tried like heck to gain weight before radiation, and ate like a madwoman, but did no good. I also put a ton of water in me, and still got dehydrated and also struggled with my potassium level.

My doctors said they never saw a patients mouth as bad as mine, period. I could not eat or drink for months. I am still unable to eat, and I will say I am pretty miserable about it. If I could eat because of my sheer will, grit and determination that I have in me, I would be nawing on a huge cheesesteak right now from my favorite Italian place. Trust me.

Apologies if I am coming off like an ass, but I have seen too many patients with great grit and resolve down to 88lbs like me. I just want to make the point again that too many head and neck cancer patients die of malnutrition.

I firmly believe we all make our treatment decisions, and if someone decides against a PEG, hey that's cool. But don't think that if you have serious grit, and determination to keep eating, that will be enough to be able to keep swallowing, because sometimes it isn't.

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Sweetblood..when did your complications start after rads? About 3 weeks post rad are when things started getting worse for me. I will go in next week and see if we can ID anything fixable. I remember the big tongue slough--it came off it strips. As I was spitting it out in the sink, I though this does not make sense! I am up 2 pounds to 91..but I keep losing it again. It seemed that it had been been getting a bit better for you for a while. One day you mentioned eating a very tasty wrap..does it go up and down?
Thanks
Stacey

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

It might be tasty. i dunno. Everything still tastes like salty wall paper paste to me. Uhmm, somedays I can get a "whole wrap" down. Takes at least an hour. It is tough, lemme tell you. Not really enjoyable to eat. Painful. I choke and gag. But man I keep trying. I keep trying to eat different stuff thinking one day I will find the holy grail. Something "sweet" can eat and swallow that tastes good.

Lemme see I think maybe it started 3 or so weeks after I stopped? I had a wicked peak of pain and nasty side effects after they stopped radiation and I continued to cook. It was most unpleasant. I then got gaggy. Massive dry heaves. Then that led to nausea. All of a sudden every time I put in a can, right back out it came. I have no clue what happened, but it snowballed, and I went from 125-130 to 88lbs. They really should have gotten me that pump earlier. I do much better with it going in slowly. It is a pain in the ass to be hooked up for 12 hours tho.

Eeew. Your tongue peeled off? Woman, that is worse than the roof of the mouth I think. My tongue is still killin me. Feels scalded. So many foods still burn my mouth. My mouth is already in pain, and then you stick something in it and try an chew, and it just aggrevates it, and makes it more painful. It sucks. I used to love Vitamin water, cause I hate normal water. I cannot even tolerate that. Burns like heck. I drink Bolthouse farms Mocha Cappuccino, and Hazelnut drinks. They actually make my tongue feel better. I also get the Strawberry Banana, Blue Goodness, and the Berry Boost. When I drink the fruit ones I add a tiny Hagen Daz vanilla ice cream. 250 cals! Sometimes I get almond milk for something different. I like the chocolate.

I do better if I eat alone. I really have to concintrate. LOL. My dad made me come up and try raviolis a couple sundays ago. I warned them I could gag and cack at the table. Might not be pretty. They said fine. But then my neices friend was there. I am like, great. I could not get the ravioli down. I ended up choking on it. Then it kills me cause I can't eat it and I have to look at it. Sometimes I try to put stuff in my chopper, or emulsifier and puree it first. I have such a bad gag reflex with mushy stuff, that it usually doesn't work. Plus it is hard to find things that don't burn my mouth. It is really frustrating.

I just realized you said you had felt worse at three weeks. I'll tell you, it throws you for a loop that you continue to get worse before you get better after treatment. It's tough. Hang in there sweat pea. You will probably be okay in time. Don't forget, I was down a salivary gland before going in to radiation. Plus I have that stupid blood disorder, so I am sure that has made it harder for me. I think since it has basically been a year since I stopped treatment that this will probably be as good as I am going to get. Grrr.

I was up to 98 or 99, and then I dropped down to 93 cause I was so stressed about that stupid mamogram. I swear it takes forever to gain, and three days to lose. WTH?

Keep trying Stacey. If you need to get the peg, then you get it. You do what you gotta do kiddo. You know I am pulling for you. You can always feel free to vent to me. Anything I can do to help. Sorry for the long babble. I think I am over tired. LOL me and my little monster went to PetCo today. I got Noah a front carrier. We then went shopping at my old store to see my former employees. Have not seen them forever!!!! Then I put a blanket over him, and he looked like a baby, and we went into Wallyworld. LOL But then he got hot, and stuck his head out, and it was so funny when people saw him. LOL I know that they must have thought I was insane. He got too hot, and I had to take the blanket down. I figured screw it what are they gonna do kick me out? It said companion dogs were welcome. He has been my THERAPY for the last year. LOL. The check out lady thought he was so cute. I could see he was getting cranky at this point, and a bit growly. So I smiled at the lady and said, "Yes he is. He is my therapy dog. Can't pet him while he is working." LOL. I am tired from lugging his chubby keister for three hours. Maybe I can sneak him in the movies next time I go. Then I won't be by myself. I am so lame.

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Sweetblood,
Thanks so much for the info..
Your dog sounds very sweet!!I used to have a siamese cat that I carried in a front pack in the house because she would meow and meow if you didn't carry her around. At least I could use my arms when she was in the snugli and my kids thought it was hysterical..
The tongue (it was only the underneath part) was much more disgusting than painful, although the throat made up for any pain I might be missing! Sorry about the ravioli, I grew up in an Italian neighborhood in Brooklyn and hope to eat ravioli again some day.
I will try the almond milk.
What was your old store?
Thanks again
Stacey

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I missed your post. Oops. Siamese are funny, they are so vocal! They are cool cats.

I managed a shoe store called, The Shoe Dept. They also have Shoe Show, Alteir Shoes, and Shoebilee.

Today I kind of tasted my food. :) I softened a 6" corn tortilla in butter in a skillet, sprinkled with montery jack and colby cheese, a little bit of pureed pinto beans, a bit more cheese, guacamole, and rolled up. Topped it with a coleslaw salad I made with cabbage and carrots, sour cream, curry powder and a tiny bit of ranch dip. It was hard to get down, took 45 minutes, but i did it. :) Noah got one bite. he is lucky, cause he usually gets nothing. I have found that a little sour cream seems to coat my tongue and make things bearable instead of burny.

I also bought other new things to try. I think Kent i think it was, said pancakes were good for him. I am going to try one with a big glass of milk. I actually also had a treat of some chocolate cake! A couple of bites. I also had some zucchini. I want my dad to cook it for me. It will taste better. lol.

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

I LOVE shoes!!
Your lunch sounds FAB! I am glad you were able to taste it.
I might try some sour cream on things. How long was it before ranch dressing did not burn? I have not been able to have any dressing yet. Of course I am still mostly eating jello, so the dressing hasn't really been a factor!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

oh sweetie, you and I would get along fab! I wish I had my own house and not crammed in one tiny beroom. Most of my things are in my storage shed. A lot of my shoes are there. :( I probably have 250? pairs??? I have a shoe fetish. There are people who when they see me automatically look at my feet to see what I am wearing. LOL. One man I know gave me a tiny book on shoes. GORGEOUS! Louboutins, Dior, LV, and beautiful shoes thru the ages. Amazing.

When I was in treatment and would go thru the RO's office the girls would look over the counter to check out my shoes and outfit every day. Even the docs and nurses. One time I went "casual". (my usual style is smart casual, if I go casual, I am mostly dressy. I love skirts and dresses and lady like clothing.) Anyway, I wore a pair of camo pants, they tie at bottom, and I pulled them up a little, just below knee, a pair of straw and leather wedge thong sandals, a fushia t shirt and olive military style jacket. Anyway, the staff did not approve. LOL. I walked in that day, and passed out! LOL. They had to give me potassium and fluids that day. The one nurse said it was because I wasn't dressed to the nines like I always was. She said my body rebelled. They all were so nice there. A couple of the nurses gave me gifts on my last day! I was so touched! My step mom made TONS of cookies trays for everyone. They loved us. :)

Actually, the ranch dressing still burns. I can't eat jello at all, that burns really bad for some reason. Water burns. Actually everything burns. I tried a sweet pickle the other day. That was stupid!

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Shoes are great--
I love to go thrifting and find fun shoes. Every now and then, I buy a new pair of shoes. The ones in the picture are from Poetic License (check out their website-they have the coolest shoes) and they were a completing radiation gift from my aunt.
I will take whatever cheering up I can get right now!
I hope the pickle was good--I am not even close to brave enough to try.
I would love a real sour pickle..we do not have any here in Montana.
Also we had 3 inches of snow today-Fabulous!!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Those shoes were yummy. Thank you. had to check the whole site. the one you posted is cute and very retro.

http://www.musthaveshoes.com/mhs/products?shoes=dress-shoes&page=2&shoe=georgi-red

these ones are very similar to the first pair I have bought in over a year! I got them a couple weeks ago. Mine are Madden Girl, "kizzler" and they are blue. Very close, but mine are cuter, and probably a little higher??

http://www.shoes.com/Shopping/ProductDetails.aspx?p=EC1221314&pg=5122679

these are mine. i got mine on sale @ macy's last pair for like $39.00

The pickle was a stupid idea. I won't do that again for quite a while.

I don't know how you live there! I HATE snow!

Ibuild4u
Posts: 5
Joined: Feb 2010

Jen,
My husband has NPC/SCC/T1/N2/MO Stage 3...We fought for two weeks NOT to have the PEG installed..until his weight started dropping drastically.. We are through Chemo and Radiation and 5-FU as of April 12th? Thank God we had a "proactive" Radiation Oncologist..!!. My husband has lost 85 pounds to date,and still has the feeding tube. The 5-FU Treatment totally reaks havoc on his mouth and takes 2-3 weeks to even swallow without Morphine,and Carafate Rinse.We stick strictly to the Nurtren #1, and #2 being feed through the tube due to a clogged tube and another having to be installed (painful)..I do add protein powder to the nutren trying to boost his muscle repair...But we FLUSH..FLUSH..FLUSH..with water after each feeding.Please know we did not want the tube either...But if you take care of it..It will be your Husband"s second "best friend" (besides you)..We are hoping our Journey is coming to an end"God Willing".. You will find this site a respite those long nights at the Hospital when you need a "friend"

He began with 35 straight days radiation...Mixed with (3) rounds of concurrent Chemo ( I think they try to bring you to the brink of dying to kill the Cancer)...It has been brutal...We had Cisplatin until he lost 50% of his hearing,and Oncolgists said one more round and he could lose 100%. Third round was Carboplatin..

If I can give you any advice..It would be to tell your Husband he MUST be his own "medical advocate"..ASK what and why,at the Dr's Office,as well as while he is in the Hospital..Sometimes the Nurses might get frustrated..But a Good Oncolgist" does NOT..

OUR prayers are with you as you begin your Journey..May you be blessed with BEST Medical Team to make this journey more tolerable..!!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Couldn't agree more...

I know I was blessed with not having such a terrible time considering I didn't have a PEG. I did have 5FU pumped through me 24/7 for three separate weeks. Also had three rounds of Cisplaten, with three rounds of Taxotere thown in for good measure. Then seven rounds of Carboplaten, Oh and don't forget the 30+ injections of Amifostine before each of the 35 head shots of radiation from the IMRT rotating to nine different locations to my throat as I was strapped to the table....LOL.

I asked questions, seeked experience from others (CSN H&N is awesome), gave most of the doctors and nurses a fit...(when I could get away with it).

When I go in (as like yesterday - port flush), they laugh and say, "OH NO, here comes trouble", and the newbies just going though treatment look at me strangly....LOL. I know what they're in for, where they're heading, been there, done that....ask me about.

Cheers to all of us Survivors....

John

turtle08
Posts: 2
Joined: Jan 2008

hi jen.i'm almost three years out of treatment.i really wasn't given an option about having a peg.it was also about the last thing to be removed.having said all that-it was the right way to go.i hated it,but it was the best for me.lots of hurdles ahead of you-so if the drs. think it will help-then that's the way to go.i know how your husband feels-i was the same way.best of luck to you both.wish i had found this site when i first started my little adventure.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Also not given an option, that does make the "three years" exceptionally sweet to read, turtle08. Would like to know of your Chemo delivery- which Chemo(s), and how were they delivered- drips? And what was the time involved in the Chemo delivery?

And which were you- NPC, tongue, tonsil, larynx, etc.?

Still have my PEG (had since 1/29/09), but am seeing a Surgeon on Tuesday about getting it yanked- by either him, or me. Kept my mask, as so many others also have, and am thinking I'll take the PEG home with me, too. Best friend there for a couple months, you know.

Glad to hear of your success, Turtle08.

kcass

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