Tu-be or Not Tu-be

Goalie

OK, that was just the title, we’re talking tubes here.

I am in the last week of an 8½ week course of 5x rads per wk and 2 chemos (wks 1 and 5- too sick for 3rd). I am HPV+ with an ex-primary in the rt tonsil (taken late Aug) then given a month to recover before starting rads and chemo for the rt lymph cancer. I actually put off the start of treatment by a week so I could play in, win, and MVP a Senior Hockey Tournament in Rochester.

We had some really rough times (not that I have to explain what these are to you all) but things are good now. I am swallowing imperfectly but managing to get down ~1800 cals from Boost+ and whatever else I can manage. We have, thus far, refused a tube, even having made and broken a few appts for same. On the other hand, I have lost about 35 pounds off of what was a 180 lb athletic body, which weight loss is almost stopped.

We think that we are safer not having a tube and forcing the continued swallowing and all. The con will be that any recovery will be much slower than it would be if I could just manage to cram an extra 1000 cals in there without needing to swallow them. And I would like to get back out on the ice again. Actually, I would just like to get enough strength and have enough extra cals to just be able to walk on a treadmill and to start to rebuild 30 pounds of muscle on this now-cadaverous frame.

So what do you think? We have one last week in which to make this choice. Is it worth having the tube and possibly speeding up recovery? Even if for only a month? Or is it better to just stay as I am slowly building and not taking the chances that any surgical procedure can have? (I should tell you that we have had EVERYTHING during this long course including blood clots, low white counts, allergy to all pain drugs, terrible allergic reaction to PPN attempt, etc. and we are a bit leery of anything any more.)

What do you think? Thanks for the counsel. Doug

RushFan

Not for me..
I did not have a tube...it was suggested by a nurse in the beginning, but I did not want one. Period. My rad-oncologist thought I would be fine and was in my corner the whole time. I held on with Boost & Ensure.

I'm seven months post treatment of 35 rads and 7 chemo. I started at 5'11",210 pounds. Thank goodness I had that muscle (powerlifted for years). I got down to 175, now at 180-185. It will be very difficult to build that muscle back on. I am eating well now, not great, but feeling great. I am slowly starting to lift very light weights. My concern is that as I get back into it, I will need to increase my caloric intake, and that's a bit tough. (Dry mouth)

My vote is "no tube". Best to you.

SASH

Tube
It is great that you are doing as well as you are during these times. For extra calories you can add weight gain powder into your boost. This is available at most Vitamin stores like GNC or online.

There are some that are flavored or some that are tasteless that can be added to any type of drink. The one I used was flavorless and was 700 calories per 2 scoops.

Since you are able to swallow anything at this point is a good sign that the healing is working. I was unable to swallow probably 1/2 way through radiation and forced myself to get down a single glass of Gatorade a day. Certainly not enough to sustain me, but that was it. I lost 95 pounds during treatment because I didn't have the PEG. In hindsight I would have been better off with the tube and only use it to supplement what I was getting by mouth and when it was too hard/painful by mouth I would have an alternative.

Everyone is different and only you can make the choice but at this point since you are at the tail end of treatment and swallowing, my suggestion would be to opt out of the tube and just add more boost or more boost with the powder. For muscle there might even be a better choice powder than just the calories like a protein powder.

Joel4

SASH said:

Tube
It is great that you are doing as well as you are during these times. For extra calories you can add weight gain powder into your boost. This is available at most Vitamin stores like GNC or online.

There are some that are flavored or some that are tasteless that can be added to any type of drink. The one I used was flavorless and was 700 calories per 2 scoops.

Since you are able to swallow anything at this point is a good sign that the healing is working. I was unable to swallow probably 1/2 way through radiation and forced myself to get down a single glass of Gatorade a day. Certainly not enough to sustain me, but that was it. I lost 95 pounds during treatment because I didn't have the PEG. In hindsight I would have been better off with the tube and only use it to supplement what I was getting by mouth and when it was too hard/painful by mouth I would have an alternative.

Everyone is different and only you can make the choice but at this point since you are at the tail end of treatment and swallowing, my suggestion would be to opt out of the tube and just add more boost or more boost with the powder. For muscle there might even be a better choice powder than just the calories like a protein powder.

Curious
Congratulations on what sounds like a very succesful hockey tournament.
I can't weigh in on the tube question as I haven't had to make that choice myself but I wish you the best of luck on that front no matter what you decide. You sound like you're in great shape and have the right attitude required to get through this.
I saw that you mentioned Rochester and was wondering if you were from Rochester NY. There are already three of us on this relatively small board that are from Rochester NY so I was just curious. If so we need to get together and find out what they are putting in the water.

Goalie

Joel4 said:

Curious
Congratulations on what sounds like a very succesful hockey tournament.
I can't weigh in on the tube question as I haven't had to make that choice myself but I wish you the best of luck on that front no matter what you decide. You sound like you're in great shape and have the right attitude required to get through this.
I saw that you mentioned Rochester and was wondering if you were from Rochester NY. There are already three of us on this relatively small board that are from Rochester NY so I was just curious. If so we need to get together and find out what they are putting in the water.

Rochester
Sorry, only came to Rochester for the tourney, stayed in Henrietta as we were playing at MCC. Five games in a long weekend doesn't leave much time for sightseeing but we (wife and I) really enjoyed our few hours out in the city (Eastman) or environs (Lake, canal, etc.) Would be happy to come back again in summer. Doug

Hondo

Hi Doug
I did all my treatment both times with out the PEG tube thing, but the cost was I lost a lot of weight in the process. Sometimes now I wish I would have done the PEG tube and got it over with. Any way I am glad to report that yes you can do it with out the PEG but you need a good caregiver behind you supporting you all the way through and after treatment stops for a few months.

All the best to you and welcome here to our home on CSN.
Hondo

MJ70

Doug ie tube in or tube out...
My first time with the tube was for six months in the chest..Plainless for me and i could swallow very little but some so I used both ...I got tired of it after six months..I needed it the most for the three months after I completed my treatment as my mouth got so bad with my mucous lining so inflamed..So actually I needed it more after my treatment...My second with the tube was after i had my lower left jaw replaced and only for two weeks through my nose..ugh...Did not like that one.. My thought is you might need it a little longer than one month but that all depends on you...I used it for fluid and food..I remember hersley had a good one that was 400 calories per can.. So I vote for the PEG.. Mel

Kent Cass

Surprise
As the PEG advocate, were I in your shoes, Doug, I probably wouldn't get it done! You've made it this far without, and if you're only talking about a little speedier recovery- no. And especially if you've got the kinda reaction history you mention in the (). I am one of those who was not given a choice, and the PEG became a critical necessity from the end of week-#1 thru most of my treatment. It would seem your reason for getting a PEG is very different.

And it sounds like you're handling all the negatives in your battle like a- like a hockey player would. Oh yeah.

kcass

Skiffin16

NO PEG
Another no pegger here also.....wasn't necessarily that I chose not to have one. It was (in my case) just not felt it was needed. I was about 275# going in, nine weeks of chemo, then seven weeks of chemo/radiation.

I pretty much survived off of Ensure Plus and water (and drugs that allowed me to numb the throat up, swallow, then take the edge off of the pain), from about the fourth week of chemo/rads and three or so weeks after..

I lost about 45# total, and now 18 months post treatment, have gained some of that back.

You've made it far already and with most of the worse behind you.

Just to let you know, 1000 calories is only three cans of Ensure Plus....so I think you could easily add that to your diet.

Just realize that your health and recovery is what's most important at the moment. By trying to exercise strongly, it might actually impede your recovery and healing process more than just allowing your body to rest and use all of those calories to recover.

Best,
John

Tanager75

Tu Be
I lost a lot of weight even with the tube. My body went after the muscle weight and I got very week even with the tube. More then the calories I needed the tube for water. I could swallow some but the taste of the water, yuk. We are all different and I had a terrible experience with the tube itself (had three different ones because of the some complications). Overall, the tube was a life saver for me. I used the tube for about a month after my last radiation. I believe they can put it in after you start treatment but it is a painful procedure for a couple days.

Peace be with you,

mark

Scambuster

Tanager75 said:

Tu Be
I lost a lot of weight even with the tube. My body went after the muscle weight and I got very week even with the tube. More then the calories I needed the tube for water. I could swallow some but the taste of the water, yuk. We are all different and I had a terrible experience with the tube itself (had three different ones because of the some complications). Overall, the tube was a life saver for me. I used the tube for about a month after my last radiation. I believe they can put it in after you start treatment but it is a painful procedure for a couple days.

Peace be with you,

mark

Tube - good for grits
Hi Doug,

You are doing well man. My case - was losing 10lbs a week from the start of Rads/Chem (SCC Left Tonsil - Had surgery and 7 weeks IMRT 2x a day + Erbitux). I got the PEG in Week 3 because of the weight loss and I would not have made it without it. I had it in till about 7 weeks post treatment. I went from 206 to 154 lbs. Now back at a nice 175.

My consideration is that if you do give yourself better nutrition after treatments (& preferable through), the overall prognosis is shown to be better. With the Tube you can introduce more stuff both re: volume and variety that you probably wouldn't handle so well by mouth. Also, the period after treatment can sometime be the worst. It was for me. I was able to put nutrition shakes, vital greens, glutamine powder and other stuff through the tube. As I started and increased food by mouth, I still used the tube right up till I had removed with at least one powerful nutrition and supplement feed a day right till the last day.

If you are content to stick with 'boost, ensure' type sustenance (mainly dairy protein), then it may not make a huge difference.

The only down sides to the tube are 1. the anaesthetic and 2. a little pain for a couple of days after 3. it is a bit of a nuisance and 4. you will have a small scar after removal.

For your muscle loss, L-Glutamine powder is worth a consideration and it also aids healing. You can do that with or without the PEG. Just mix with water and drink. It will also help with mouth pain & healing.

Cheers
Scam

Jimbo55

Doug the Goalie
I also did not have the tube, didn't really need it for the most part. My feeling is this: if you need it to improve your nutrition, then get it. Why not, if it will help in your recovery? If you think you're doing good enough without it then I would probably pass at this stage. A big unknown right now is how fast you will recover once treatment is finished. Some folks take several months to be able to begin eating again. I was more fortunate, I began to feel better 5-6 days after treatment ended. You are so close now Doug, it's a tough question.

I tried to get a bit of exercise every day. For me this was a walk in the park. I started at 35-45 min/day, but at the end I could barely stroll rather leisurely for 20-25 min. I believe, and there have been some studies that confirm this, a bit of daily exercise helps in fighting the fatigue and aids in the recovery process. I dropped about 20 lbs during treatment and haven't put much if any back on since. I am eating much better, but just don't have the same appetite I had previously. I began going back to the gym about 1 month post treatment (and it was pitiful). I could only do some of the lightest of weights and the 1st time I tried to run, 5 minutes was all I could muster and even with that I was sweating like a madman. I am 4 months out now, ran 4 miles on Thanksgiving and had a good swim today.

Doug hope your recovery is swift and you're back out on the ice soon. Cheers

Jimbo

fisrpotpe

No Tube
Doug, you have gone so far and done so well without the tube how wonderful that is for you. I would prefer you did not get one. I believe so many lean on the peg tube and fall off from the swallowing and it makes it much harder to swallow down the road. I also feel that not having the tube motivates and forces you to keep pushing the swallowing and in long run helps you more as it keeps the area open to make swallowing easier. On the other side I have seen some that recover much slower with tube and some much faster, and the same with out the tube. There is no guarantee the tube will help and make a faster recovery.

Good luck with your choice

rush1958

Tube
Doug,

I had a tube put in at the recommendation of the doctors.

For me, it was the most miserable part of the whole cancer treatment. It hurt to put it in, it completely knocked me down for weeks and I never needed it at anytime during the process.

Everybody is different. For some people the PEG was a life saver. For me, it was an aggrevation I could have done without. Getting the tube is the one thing I would not do again unless an actual need for it was demonstrated.

Rush

davidkay

No tube for me!
As several others have said here, I felt it was best to keep swallowing...no matter what! Though my oncologist said very few of his patients made it through the full course without a tube, I did and I'm glad I chose this course.

If you feel you can make it, I think you should "stay the course". To me, it was just the most natural thing to do and I was adamant about keeping my body functioning as normally as I could.

Now, a little more than 2 months after my last treatment, I am eating just about everything (with varying levels of comfort and in smaller quantities), and I feel a little better every day. I did lose 56 pounds as a consequence, but starting at 280 I could afford it and look better now than I have in years.

Hang in there!

Hondo

davidkay said:

No tube for me!
As several others have said here, I felt it was best to keep swallowing...no matter what! Though my oncologist said very few of his patients made it through the full course without a tube, I did and I'm glad I chose this course.

If you feel you can make it, I think you should "stay the course". To me, it was just the most natural thing to do and I was adamant about keeping my body functioning as normally as I could.

Now, a little more than 2 months after my last treatment, I am eating just about everything (with varying levels of comfort and in smaller quantities), and I feel a little better every day. I did lose 56 pounds as a consequence, but starting at 280 I could afford it and look better now than I have in years.

Hang in there!

Hi David
Welcome to CSN glad to have you and Kay join us here.

All the best to you and please plan to stay.

Hondo

Goalie

davidkay said:

No tube for me!
As several others have said here, I felt it was best to keep swallowing...no matter what! Though my oncologist said very few of his patients made it through the full course without a tube, I did and I'm glad I chose this course.

If you feel you can make it, I think you should "stay the course". To me, it was just the most natural thing to do and I was adamant about keeping my body functioning as normally as I could.

Now, a little more than 2 months after my last treatment, I am eating just about everything (with varying levels of comfort and in smaller quantities), and I feel a little better every day. I did lose 56 pounds as a consequence, but starting at 280 I could afford it and look better now than I have in years.

Hang in there!

Doug's response
Just thought I would thank everyone for their very thoughtful responses here. I am sure that we will not be doing a tube on Monday given the potential pros and the potential cons. I will just have to accept the very slow improvements possible. Today I not only had all my Boosts but also thick cream of potato soup and tried a little bread. It will be such a relief just to not be insulting/assaulting my throat when I finish in a week.

I also include a new pic from Rochester with my wife. She is the rock on which this recovery is based. She even took the last month off from work to carry me through this. I hope you all have had a good Thanksgiving weekend. Doug

For the up to the minute story, our blog is:

www.caringbridge.org/dougiebaker

micktissue

Goalie said:

Doug's response
Just thought I would thank everyone for their very thoughtful responses here. I am sure that we will not be doing a tube on Monday given the potential pros and the potential cons. I will just have to accept the very slow improvements possible. Today I not only had all my Boosts but also thick cream of potato soup and tried a little bread. It will be such a relief just to not be insulting/assaulting my throat when I finish in a week.

I also include a new pic from Rochester with my wife. She is the rock on which this recovery is based. She even took the last month off from work to carry me through this. I hope you all have had a good Thanksgiving weekend. Doug

For the up to the minute story, our blog is:

www.caringbridge.org/dougiebaker

Hey Doug, website address is not quite right ...
http://www.caringbridge.org/visit/dougiebaker is where you need to go ...

Best,

Mick

Army_Guy

The TUBE...
Hi Doug,

I absolutely HATED the tube, but it saved my life. By the 3rd week all food started tasting like dirt so I switched to Ensure Plus (2 bottles, 3x day). Once my throat got too sore I relented and began using my tube since it was taking more than 45 minutes to choke down one bottle of the stuff. Once I finished treatment and my throat got better I began eating "real" food as much as I could until I was able to have it removed. Mine was put in before treatment; if I were in your shoes I would gut it out and try supplements, Ensure Plus and a little Gatoraid to keep up electrolytes. However, it would be wise to get your doctor to weigh in (no pun intended) on the issue before you make a final decision.

csssurvivor

Tu-be or Not Tu-be
Doug,

I got the tube and it probably saved me some hospital time due to weight loss and dehydration. I started rad/cemo treatments is Feb 2010 and finished treatments 30 Mar 10. I didn't need the tube for the first 3 weeks, but used it for the following 8 weeks. For a more comprehensive view of my battle with cancer see my blog at: www.mrnedbagcancerbattle.blogspot.com/

I was declared cancer free 18 Aug 2010.

Best of luck, you can beat it.