Has anyone had to get a feeding tube after treat ended?

mskitty137

My husband will finish his treatments on Monday.  He was doing pretty good all things considered with eating until this week.  The last Cisplatin has kicked his butt and he's having trouble keeping Boost down. He's starting to panic about the possibility of needing a feeding tube. He was able to eat some chicken noodle soup last night so I'm hopeful.

MarineE5

Just a thought

mskitty, 

I am glad to read that your husband will complete his treatments on Monday. You probably know this already but it is worth mentioning again. Your husband will "Cook" for a spell as he feels the full effect of all the treatments. You mentioned he is unable to keep Boost down. One thing I found was to make sure anything I took in orally or by my PEG tube was at room temperature. I had my PEG Tube from the start as I had Base of Tongue cancer, and removal of part of my tongue. I was unable to eat orally for some time. 

I have read on this site some members getting a PEG tube shortly after they completed their treatments, we have to do what needs to be done to get our calories and nutrition in. Hopefully, he will be able to start eating some soft boiled eggs, soups, etc. Again, try to let food and fluids settle to room temperature for a spell.

My Best to Both of You and Everyone Here 

phrannie51

Yes....

I think it was "T" (fishmanpa in this group) who got his feeding tube the day his treatment ended.  Getting a tube won't help keep things down, tho....it simply bypasses the tore up mouth and throat.  See what the Oncologist can come up with to help with the nausea....something stronger than what he's already got.

p   

mskitty137

Yes, he's been on room

Yes, he's been on room temperature foods and drinks for quite awhile. But, of course, everything still burns/hurts going down. He uses a tetracaine lollipop and then eats or drinks some.

I called the doctor's office this morning and they ordered more Emend, Zofran and steroids to his usual weekend IV fluids. Right not, he is feeling better. Not dizzy  and was able to drink a carnation instant breakfast drink. He says he's off the Boost at least today.

Breaks my heart to see him so weak and frustrated.

 

AnotherSurvivor

Seems like a lot of us have a

Seems like a lot of us have a rough last chemo.  And then it's done.   He will have to be in really rough shape to get a PEG now.  Usually they chew you out a couple of times, sentence you to a session with a dietician.  If they kick up his Zofran, make sure you increase his fiber intake and start something like Colase (for constipation).   Also, Senna is very good for that problem, but fiber is better in the long run.  

caregiver wife

After treatment

As a caregiver and a survivor, there is a psychological process at the end of treatment.  We do whatever we have to do to get through treatment, but some of us are not prepared for what come after.  There is a new me, a whole new reality.  Everything has changed and it can be just as much a challenge as the initial treatment.  We want to be done, and instead we find it is just beginning.  I really depended on my online support group for this stage.  I  went to a local support group.  Be patient.  Now is time for the healing.

Hugs,

Crystal

CivilMatt

I had 2 PEG's, but popped the 2nd at 2 weeks post.

mskitty,

Yes, some do, but he is days from finishing and he is still eating (some).  Do and try to get down some calories.  He is so close, and he is already done with chemo and on the borderline with rads.  Things should start to improve.

I hope the butt kicking is over and the slow move toward the new normal can begin.

Matt

Joel4

i was having a hard time keeping things down because of bad reflux and heartburn.  i woke up this past Tuesday night at 2:00 AM and unexpectedly threw up in my mouth...a terrible experience.  

I am currently using a feeding tube and the contents of my Omeprazol caplets were getting stuck in the tube so I had my Oncologist write a script for liquid Omeprozal and I haven't had a problem since.

if the problem is actual nausea brought on by chemo than your medical Oncologist needs to work on finding the right combo of meds that work for your husband.  For me Zofran and Ativan did the trick.  Ditto what  was said earlier about room temp ensure.

Good luck and hope to hear that your husband is doing better!

Joel

mskitty137

Thanks for all the support

Thanks for all the support and advice.  It's greatly appreciated.  I have to say I really wish there was a local head and neck cancer support group in our area for patients and their caregivers. I mentioned this to our radiation nurse and she just nodded and offhandedly agreed it would be nice. Arrggh. Anyway, I'm seriously consider trying to organize something with the cancer center and the hospital.  The hospital has a few cancer support groups but they are specifically for either breast or colon cancer, nothing else. 

Thanks again!!

phrannie51

mskitty137 said:

Yes, he's been on room

Yes, he's been on room temperature foods and drinks for quite awhile. But, of course, everything still burns/hurts going down. He uses a tetracaine lollipop and then eats or drinks some.

I called the doctor's office this morning and they ordered more Emend, Zofran and steroids to his usual weekend IV fluids. Right not, he is feeling better. Not dizzy  and was able to drink a carnation instant breakfast drink. He says he's off the Boost at least today.

Breaks my heart to see him so weak and frustrated.

 

Emend is the big dog...

in anti-nausea meds.  I used to take it for three days after every chemo.  Tho I had some bumpy times with "flash-nausea" (the kind that sneaks up out of nowhere)....the big sick never hit those first few days.  Glad he's doing better!

p

phrannie51

mskitty137 said:

Thanks for all the support

Thanks for all the support and advice.  It's greatly appreciated.  I have to say I really wish there was a local head and neck cancer support group in our area for patients and their caregivers. I mentioned this to our radiation nurse and she just nodded and offhandedly agreed it would be nice. Arrggh. Anyway, I'm seriously consider trying to organize something with the cancer center and the hospital.  The hospital has a few cancer support groups but they are specifically for either breast or colon cancer, nothing else. 

Thanks again!!

There wasn't one here in our

town, either.  A girl I met on here when I first started treatment started one herself.  We meet once a month in the hospital cafeteria...My mom started one back in the 90's for larengectomee's, people came from 120 miles away....If you know one other patient, it can be done pretty easily.

p

Joy123

I had radiation and chemo

I had radiation and chemo with displaying for cancer on my tongue and lymph node. It tore my mouth up. I had to get a feeding tube after a few weeks if treatments.  My last radiation treatment was March 1. I still have my feeding tube because my mouth is still too sore to eat. I'm working in taking liquids by mouth now because it's finally getting a little better. 

Joy123

I had cisplatin chemo. 

I had cisplatin chemo. 

fishmanpa

Yep...

Yes, Phrannie remembered... By the end of treatment, my mouth and throat were so torn up I could barely swallow. My team gave me a choice. Get a feeding tube and go home or stay in the hospital and be fed through a picc line. I chose the tube. I took everything via the tube for about a month except water whch I was only able to sip. I would add water to my feeding to help stay hydrated.

I'm happy to say at 4 years out, despite permanent swallowing issues due to the surgeries and treatment, I'm able to eat most anything and I have 100% of my taste. It's still chew, chew sip swallow but I manage. Still doing the swallowing exercises and will for life. 

If he needs the tube, just do it. It wasn't tat bad and I had it out at my first post treatment check up.

Positive thoughts and prayers

 

mskitty137

Luckily,  it looks like he's

Luckily,  it looks like he's going to be able to avoid the tube. He has been doing much better the last couple of days.  And at his weigh in today, it was the first time since beginning treatment that he had not lost any weight. Woo hoo!

Joy123

that's good his weight is

that's good his weight is stabilizing.   if he does need the tube though, just get it.  I resisted it and ended up losing weight and becoming dehydrated.  They were giving me IV fluids.  It's a pain but it's keeping me alive.  It's only temporary until I can eat sufficiently.   I hope all goes well with him. 

58HarleySportsterman

Avoided the dreaded feeding tube!

Although my weight loss, nausea, and throwing up during my chemotherapy and radiation treatments had me headed straight for the insertion of a feeding tube less than halfway through my first (and hopefully last) round of treatments, I was able to avoid it altogether with a simply change in my medications. Instead of the Hrydrocodone(s), oxycodone(s) etc. that were supposed aid these issue, which did a poor job at best and just made me feel sicker, my Medical Oncologist took me off of those meds completely and placed me on Morphine and medical marijuana (pill form). Within hours of taking the first M.M. pill my wife could see the improvements beginning in me. The nausea and vomiting was all but gone in the first twenty-four hours and I was eating much better than before by the third day. Now just a mere three weeks out from my last radiation treatment, I'm eating like a horse and hungry almost all of the time. By doing so I have been able to stop the weight loss, eat normal foods (with lots of water to wash it down a very dry throat) naturally, and avoid the feeding tube and all of the unpleasantries that can go with it.

My doctor did have a port put in me to pull bloodwork from, infuse my weekly Erbitux treatments, hydrate me if and when necessary, etc. Without going down the treatment path that we did, I certainly would have a tube sticking out of my stomach now. Allow me to also note here that part of the original reason for the port to be inserted was due to small and collapsing veins making the treatment process difficult, added to the eating/weightloss issues that soon developed after the treatments began. So had we stayed on the other path of treatment, I was told that I was most likely looking at having been given both a stomach tube and port to go with it.