Newly diagnosed
Comments
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Caregivers perspective
Hey Mike,
Welcome to CSN. As you can tell from all the responses, there is a WEALTH of information, personal experiences to share and tons of support.
I'm the caregiver/life partner to Mike and he opted to get the tube and he is thankful he did it. He went into this journey knowing the feeding tube (PEG) would be his lifeline to nutrition. Similar to what your docs say, things start to get unpleasant around 3-4 weeks. We used the tube not only for nutrition but also for medications. He used a 6" ace wrap to keep it secure and flat against his body. Even though he had the tube he lost 63# (started at 283 and current stable at 220ish).
I hope you did ok with your mask fitting. I know it's not easy and if you need something for anxiety, ASK for it. Mike took something initially but eventually got use to it.
Again, I can only offer my thoughts and suggestions from a caregivers point of view but know this journey is difficult but you can get through it. No question is stupid and as you can tell, everyone on this board is open, honest and will provide support along the way.
My thoughts and prayers are with you...hang in there.
Chris0 -
Thanks for the input. ICLRRN said:Caregivers perspective
Hey Mike,
Welcome to CSN. As you can tell from all the responses, there is a WEALTH of information, personal experiences to share and tons of support.
I'm the caregiver/life partner to Mike and he opted to get the tube and he is thankful he did it. He went into this journey knowing the feeding tube (PEG) would be his lifeline to nutrition. Similar to what your docs say, things start to get unpleasant around 3-4 weeks. We used the tube not only for nutrition but also for medications. He used a 6" ace wrap to keep it secure and flat against his body. Even though he had the tube he lost 63# (started at 283 and current stable at 220ish).
I hope you did ok with your mask fitting. I know it's not easy and if you need something for anxiety, ASK for it. Mike took something initially but eventually got use to it.
Again, I can only offer my thoughts and suggestions from a caregivers point of view but know this journey is difficult but you can get through it. No question is stupid and as you can tell, everyone on this board is open, honest and will provide support along the way.
My thoughts and prayers are with you...hang in there.
Chris
Thanks for the input. I ended having to reschedule my mask fitting to this upcoming week because of the swelling i have from the oral surgery i had done. So mask fitting and pick line this week. Still undecided on feeding tube sorry.
Mike0 -
CLRRN said:
Caregivers perspective
Hey Mike,
Welcome to CSN. As you can tell from all the responses, there is a WEALTH of information, personal experiences to share and tons of support.
I'm the caregiver/life partner to Mike and he opted to get the tube and he is thankful he did it. He went into this journey knowing the feeding tube (PEG) would be his lifeline to nutrition. Similar to what your docs say, things start to get unpleasant around 3-4 weeks. We used the tube not only for nutrition but also for medications. He used a 6" ace wrap to keep it secure and flat against his body. Even though he had the tube he lost 63# (started at 283 and current stable at 220ish).
I hope you did ok with your mask fitting. I know it's not easy and if you need something for anxiety, ASK for it. Mike took something initially but eventually got use to it.
Again, I can only offer my thoughts and suggestions from a caregivers point of view but know this journey is difficult but you can get through it. No question is stupid and as you can tell, everyone on this board is open, honest and will provide support along the way.
My thoughts and prayers are with you...hang in there.
Chris
0 -
voting yes for the tubeRedwngs said:Thanks for the input. I
Thanks for the input. I ended having to reschedule my mask fitting to this upcoming week because of the swelling i have from the oral surgery i had done. So mask fitting and pick line this week. Still undecided on feeding tube sorry.
Mike
My husband had base of tongue and hypopharyngeal cancer.
Got the tube. Never had to use it.
Weight dropped from about 165 to 119, even though Jim was consuming at a minimum 3500 calories a day orally.
We both think the psychological boost knowing the tube was there was as important as if we had been forced to use it for nutrition.
Jim's tube was put in under general anesthesia which gave the gastro doctor a welcome opportunity to take a look at Jim's esophagus which, it turns out, was a mess. Jim started medication that had healed the esophagus by the time the tube was surgically removed (giving another chance to take a look) about 9 months later.
So, definitely voting yes for the tube, Mike.
From our perspective, you have nothing to lose and possibly eveything to gain.
Remember, NUTRITION is necessary for healing.0 -
Here neither...RushFan said:No tube here...
Hi Mike,
I'm almost two years post treatment for SCC. Radiation (35 days) and chemotherapy (once per week for seven weeks-cisplatin)
My first appt. with my rad oncologist, I was advised by a nurse during the initial interview that I "will need a feeding tube, plan on getting one put in before treatment".
I remember looking at my wife saying "I do not want one of those"...
Ten miunutes later...my radiologist said no I wouldn't need the tube.
He felt that with my age (48), weight (210), good physical condition and attitude I would be fine without a tube. My doctor was correct. After week three I was drinking ensure / boost exclusively. I did drop to 175 lbs. It was not easy...toward the end of treatments my doctor warned me if I lost more weight a tube might be necessary.
I'm back to 200 lbs. now...and really don't want or need to gain anymore weight back.
All the best to you and your family during this difficult time.
You can do it!
Chuck.
Hey Chuck good luck with keeping off the weight! I was enjoying the new thinner me but it just keeps creeping up to where it was, also 210.
The doctors take ANY weight loss personally but I am convinced that my extra weight going into the fight helped me. I also refused a peg. At the time I was just sick of being opened up like an advent calendar and ANY chance to put off more surgery was good for me.
Mind you BOT probably comes with a different set of oral problems than tonsil and lymph node cancer.
Larry0 -
Voting no for the tube...provisionallyNoellesmom said:voting yes for the tube
My husband had base of tongue and hypopharyngeal cancer.
Got the tube. Never had to use it.
Weight dropped from about 165 to 119, even though Jim was consuming at a minimum 3500 calories a day orally.
We both think the psychological boost knowing the tube was there was as important as if we had been forced to use it for nutrition.
Jim's tube was put in under general anesthesia which gave the gastro doctor a welcome opportunity to take a look at Jim's esophagus which, it turns out, was a mess. Jim started medication that had healed the esophagus by the time the tube was surgically removed (giving another chance to take a look) about 9 months later.
So, definitely voting yes for the tube, Mike.
From our perspective, you have nothing to lose and possibly eveything to gain.
Remember, NUTRITION is necessary for healing.
Just to balance things out a bit. I made it through without, as did a lot of others. It was not easy and I lost about 40 lbs off of 175 in very very good shape. (A few days before starting I played five games in the weekend in the Natl Senior Olympics.) I never totally lost the ability to swallow though it wasn't easy and was basically down to liquids only by the last weeks. And despite being, on the whole, anti-tube here at Georgetown, the drs did offer it eventually.
However, we refused because the problem of losing weight was from not being able to keep anything down, not from not being able to get it there in the first place. We just felt that the tube would just be supplying more ammunition until we could solve the vomiting problem. This we eventually did by stopping trying painkillers I didn't really need. We found that I am, alas, allergic to most of them.
Again, there are several much longer discussions of this on the Superthread and I hope that this will cause you to read them. I am not anti-tube; I am anti-automatic-tube. If there are other factors like already being underweight or malnourished or if there is already great damage to the mouth and throat (I was tonsil and lymph node, not BOT) then I would say yes. But if there aren't these other factors, consider it very carefully. I just didn't want another hole in me and another chance at infections and everything else.
Besides, even my chest protector wouldn't have allowed me to play hockey while it was in and I wanted to get back playing just as soon as I could. I am either a lunatic or a goalie which is being redundant, I know.
Doug0 -
Get the tube put in
My doctors told me it was very important to keep my weight up because once you are fitted for the mask, if you lose weight (especially in the face) the mask won't fit properly and the laser beams won't be directed on their targets. I kept my weight up by having the tube. You will get tired, food just doesn't taste the same and it's so much easier using the food tube.0 -
DITTO DOUG...Goalie said:Voting no for the tube...provisionally
Just to balance things out a bit. I made it through without, as did a lot of others. It was not easy and I lost about 40 lbs off of 175 in very very good shape. (A few days before starting I played five games in the weekend in the Natl Senior Olympics.) I never totally lost the ability to swallow though it wasn't easy and was basically down to liquids only by the last weeks. And despite being, on the whole, anti-tube here at Georgetown, the drs did offer it eventually.
However, we refused because the problem of losing weight was from not being able to keep anything down, not from not being able to get it there in the first place. We just felt that the tube would just be supplying more ammunition until we could solve the vomiting problem. This we eventually did by stopping trying painkillers I didn't really need. We found that I am, alas, allergic to most of them.
Again, there are several much longer discussions of this on the Superthread and I hope that this will cause you to read them. I am not anti-tube; I am anti-automatic-tube. If there are other factors like already being underweight or malnourished or if there is already great damage to the mouth and throat (I was tonsil and lymph node, not BOT) then I would say yes. But if there aren't these other factors, consider it very carefully. I just didn't want another hole in me and another chance at infections and everything else.
Besides, even my chest protector wouldn't have allowed me to play hockey while it was in and I wanted to get back playing just as soon as I could. I am either a lunatic or a goalie which is being redundant, I know.
Doug
Even though some think they know what is best for everyone... I trust my MD's more, and they didn't prescribe one for me....
Believe it or not, I didn't get by on just minimal nutrition, I lost a total of 42#. On average, I took in close to 2000 calories most days just from Ensure, not to mention the extra from the sliced peaches...
Like you Doug, I've never been anti PEG, and endorse them when prescribed. Unfortunately some can't be as open minded and feel that everyone must mandatorily have a PEG inserted regardless of the MD's...or even for those that make their own choice.
As mentioned on here already, there is obvious benifits to many people having the PEG.
As for losing weight and having to have the mask refitted. I'm pretty sure that goes with and without having a PEG.
Best,
John0 -
Luke, I am your father...Skiffin16 said:DITTO DOUG...
Even though some think they know what is best for everyone... I trust my MD's more, and they didn't prescribe one for me....
Believe it or not, I didn't get by on just minimal nutrition, I lost a total of 42#. On average, I took in close to 2000 calories most days just from Ensure, not to mention the extra from the sliced peaches...
Like you Doug, I've never been anti PEG, and endorse them when prescribed. Unfortunately some can't be as open minded and feel that everyone must mandatorily have a PEG inserted regardless of the MD's...or even for those that make their own choice.
As mentioned on here already, there is obvious benifits to many people having the PEG.
As for losing weight and having to have the mask refitted. I'm pretty sure that goes with and without having a PEG.
Best,
John
or was that a different thread?0 -
Obi-Wanlongtermsurvivor said:Luke, I am your father...
or was that a different thread?
Won't you be wan tu......
I felt a great disturbance in the force.
OH, and to save everyone some typing....here's two threads of the many, ummm debates concerning everyone's feelings itereated many times on the PEG;
When is it time to give in and get the peg?
PEG Tube
Just trying to save a lot of typing that's already been there done that before.
Just copy and paste the parts you don't feel like typing again....
~John0 -
What does your team say
What does your team say regarding a tube? Every doctor I saw, recommended that I get one before treatment started. I am petite. I was about 125 or so when I was diagnosed, and I'm 5'2". During treatment, 1500 calories was not near enough for me. I was getting 2200-2400 per day just to maintain my weight. I worked with a nutrition team. I did not lose any weight at all during radiation. I did get very sick afterward, and the peg tube did end up saving my life. I started treatment on 4/6/09 and I ate my last meal on 4/19.0 -
Mikesweetblood22 said:What does your team say
What does your team say regarding a tube? Every doctor I saw, recommended that I get one before treatment started. I am petite. I was about 125 or so when I was diagnosed, and I'm 5'2". During treatment, 1500 calories was not near enough for me. I was getting 2200-2400 per day just to maintain my weight. I worked with a nutrition team. I did not lose any weight at all during radiation. I did get very sick afterward, and the peg tube did end up saving my life. I started treatment on 4/6/09 and I ate my last meal on 4/19.
Sweet asks you the big question- what does your Med team say about it? John, on the other hand, uh...LOL. Seriously- this is a very important decision, and a number of factors complicate it. And, yes, perhaps the mostly controversial matter of discussion over the years. Your C Med team knows the specifics of your C, and your treatment, so they are the ones to best advise. Just keep in mind that in virtually every case that one gets a PEG well-into treatment it is a case of the C Med team having been wrong about the need for one, and that the patient has already suffered more than would have been necessary- in some cases resulting in significant hospital stays. And, you must realize that going thru an Op to get the PEG installed during treatment is far from the better option of getting one before treatment, and the compromised immune system and not exactly feeling up to fishing in Florida, or any place else (uh!). Still- your Med team is who has the best advice (rather than a Florida fisherman of questionable repute, or a Midwestern factory Inspector with 2 belly-buttons and ill repute).
Thing is- if they admit you might end-up needing one, or if they have doubts about the matter- might be the smartest move for you to say you want one. Sweet and I swear by the PEG, as having been critically important to us. I started my battle at 142 lbs, and even with the PEG was down to 117. And did spend 4 nights in a hospital in week #6. A bigger person might do a lot better, but the bottom-line is that to best make it thru the rigors of treatment one must get Nutrition and water into the stomach for the body to be able to fight the best fight possible.
Yes, PEGs can be a hassle, but most of us do get accustomed to it rather well, and they make the getting of liquid food and water into the stomach a non-issue in even the worst of times, as the PEG allows one to bypass the problem area(s) in the mouth and/or throat. Simple as that, really.
That said, you're gonna get thru this all right, just like we all do. Tough times may come, but will be made easier by the Drs with meds, and you can honeslty know for a fact that you will survive this, just as we all have-
Believe
kcass0 -
LOL, I totally agree, and yes, I should have recognized early on in his post that he hasn't been advised as of yet.Kent Cass said:Mike
Sweet asks you the big question- what does your Med team say about it? John, on the other hand, uh...LOL. Seriously- this is a very important decision, and a number of factors complicate it. And, yes, perhaps the mostly controversial matter of discussion over the years. Your C Med team knows the specifics of your C, and your treatment, so they are the ones to best advise. Just keep in mind that in virtually every case that one gets a PEG well-into treatment it is a case of the C Med team having been wrong about the need for one, and that the patient has already suffered more than would have been necessary- in some cases resulting in significant hospital stays. And, you must realize that going thru an Op to get the PEG installed during treatment is far from the better option of getting one before treatment, and the compromised immune system and not exactly feeling up to fishing in Florida, or any place else (uh!). Still- your Med team is who has the best advice (rather than a Florida fisherman of questionable repute, or a Midwestern factory Inspector with 2 belly-buttons and ill repute).
Thing is- if they admit you might end-up needing one, or if they have doubts about the matter- might be the smartest move for you to say you want one. Sweet and I swear by the PEG, as having been critically important to us. I started my battle at 142 lbs, and even with the PEG was down to 117. And did spend 4 nights in a hospital in week #6. A bigger person might do a lot better, but the bottom-line is that to best make it thru the rigors of treatment one must get Nutrition and water into the stomach for the body to be able to fight the best fight possible.
Yes, PEGs can be a hassle, but most of us do get accustomed to it rather well, and they make the getting of liquid food and water into the stomach a non-issue in even the worst of times, as the PEG allows one to bypass the problem area(s) in the mouth and/or throat. Simple as that, really.
That said, you're gonna get thru this all right, just like we all do. Tough times may come, but will be made easier by the Drs with meds, and you can honeslty know for a fact that you will survive this, just as we all have-
Believe
kcass
But...LOL, in my defense, I did say that I highly endorse the tube if the MD's prescibe. He did ask for thoughts and opinions....LOL, and you know what they say about opinions, being like ummmm... and every body having one...ummmm, or in some of our cases maybe two.
I have always been open minded about the PEG and absolutely agree that it has saved lifes, and I'll leave it there.
My best to you Kent, and I hope all is going well in your part of the world.
Brothers (and Sisters) in battle,
John0 -
update on tubeSkiffin16 said:LOL, I totally agree, and yes, I should have recognized early on in his post that he hasn't been advised as of yet.
But...LOL, in my defense, I did say that I highly endorse the tube if the MD's prescibe. He did ask for thoughts and opinions....LOL, and you know what they say about opinions, being like ummmm... and every body having one...ummmm, or in some of our cases maybe two.
I have always been open minded about the PEG and absolutely agree that it has saved lifes, and I'll leave it there.
My best to you Kent, and I hope all is going well in your part of the world.
Brothers (and Sisters) in battle,
John
I decided that I did not want it to start. Did I make the right call time will tell. All I know is that I am now going into day 11 of treatment and can still swallow fairly well with very little to no pain.
I appreciate all the input on this subject.
Mike0 -
Good luck, RedRedwngs said:update on tube
I decided that I did not want it to start. Did I make the right call time will tell. All I know is that I am now going into day 11 of treatment and can still swallow fairly well with very little to no pain.
I appreciate all the input on this subject.
Mike
As we said, as long as you can keep your swallowing function throughout, you will likely make it without a tube. You will end up on Ensure or Boost (I don't like the new formula, btw) or similar and will end up with a whole lot of soup and, if you're lucky, light stews, but it is possible. It was the vomiting and nausea that made it hard for me and if I hadn't been doing chemo at the same time, this would not have been an issue.
Skiffin's reminder of Magic Mouthwash and numbing is a good one. In the last weeks (I got nine weeks of rads) it was necessary to do this just before eating but then I "ate".
BTW, I used to play for the Caps Alumni doing exhibitions and charity games and such. Believe me, this is not as illustrious as playing for the Wings Alumni but fun nonetheless. Thanks for letting them win one there at the Joe the other day; they need the points.
Doug0 -
Eatingosmotar said:Welcome
I finsished my main chemo treatments in Oct 2011, I was able to eaat solid foods thru out, then started 39/39 rad treatments with a 1 day aweek chemo treatment in Nov. I asked my rad doc about a feedinf tube and he said so long as I didn't loose more than 2-3 lbs of weight a week or a total 10% of my body weight he was not going to have one placed, since I had extra weight to loose I was ok. I lost some saliva functionand taste about week 4, but I continued to eat whether or not I could taste, plus I supplemented with ensure and boot, I never had any issues with swallowing. As for the mask the fitting isn't bad, but if your the least bit claustophobic they can perscribe something, my rad doc gave me a script for ativan, I used it once. The only issue I had with the mask was during the trial run it was rubbing my eye lids, I asked them to cut out the eyes, and after that it was very doable.
Best of the best in your treatment,take a day at a time, stay positive and before you know it will all be over.
Linda
Linda - can I ask what you ate when you could not taste? I am post treatment three and a half months and still cannot taste food but keep trying solid foods. It is not necessarily the "taste" of the food but the consistency of it I cannot handle, did you have that problem?0 -
Get the tube
I was diagnosed on feb 3, 2009 with NPC (nasal) my doctors suggested I get the tubes but I refused since I did not want another surgery. And by the way I threw my mask out!! It was a wonderful day! I see a lot of people made out much better than I did on here. I had 7 weeks of head/neck radiation and 6 months of the chemotherapy. The radiation put me right out of service. I couldn't even swallow my own spit. I didn't eat a thing I couldn't swallow even the nutrition shakes they want us to consume. I was intravenously fed just to maintain some weight. They grew more and more concerned. Had I known then what I know now I would have gotten the tube. It wasn't that I was not hungry (food commercials were the worst) I just simply could not swallow. I wish you the best of luck I know you can do this! Keep your chin up and I will be happy for you the day you can toss your mask out too!0 -
Doesn't it feel GREAT to know you are FINISED with that mask? I am severely claustrophobic and had to take ativan every day before treatment. It felt SO good to walk out of that place on December 9th knowing I did not ever have to wear that mask again!!!!!longtermsurvivor said:PS
YOu can have my mask, Mike. I'm done with it tomorrow:)0 -
Feeding tubeHal61 said:Tube before any treatment for me
As I've recounted before, I was never given a choice. My docs said get the tube before treatment, so I did. Outpatient insertion, no pain, ever. I got the long tube (old school) which seems to be a better choice if you get a choice.
I could swallow throughout, but was glad I didn't have to eat, because the meals being served during my treatment weren't fit for human consumption. I did make sure I swallowed lots of water and occasional shakes to keep the swallow going and never had stricture probs. Got so used to it I used to regularly get up to get something while "feeding" and topple the pole, and bag of liquid food.
Save yourself some adhesive tape, and create a "cumberbund" by folding a wide ace bandage lengthwise and joining it with a couple of safety pins. Leave the open side up, and tuck your tube into it when not eating or going out. Otherwise, you'll be removing tape residue late into the night.
best, Hal
Hal - they also make a portable machine for feeding tube.....I got one of those, ordered a fanny pack size carrier for it and off I went....no cumbersome pole to drag around behind you and you can go with it all day if you need to. As much as I hated the thing, at least it was made easier when I did this....0 -
I couldn't even swallow my own spit.Karri said:Get the tube
I was diagnosed on feb 3, 2009 with NPC (nasal) my doctors suggested I get the tubes but I refused since I did not want another surgery. And by the way I threw my mask out!! It was a wonderful day! I see a lot of people made out much better than I did on here. I had 7 weeks of head/neck radiation and 6 months of the chemotherapy. The radiation put me right out of service. I couldn't even swallow my own spit. I didn't eat a thing I couldn't swallow even the nutrition shakes they want us to consume. I was intravenously fed just to maintain some weight. They grew more and more concerned. Had I known then what I know now I would have gotten the tube. It wasn't that I was not hungry (food commercials were the worst) I just simply could not swallow. I wish you the best of luck I know you can do this! Keep your chin up and I will be happy for you the day you can toss your mask out too!
You had spit...., I envy you....
I drooled imaginary slobbers, while I DVR'd the Food Channel....LOL
Best,
John0
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