G tube removal

OrchidNancy

I just came upon this website tonight and have been reading all the posts about pain after radiation treatments have ended. My husband completed his 30 radiations one week ago today. We knew that the throat/swallow pain relief wouldn't be immediate, but they said he'd be much better in two weeks when he returns and his pain hasn't improved at all as of today. So I went looking for what others had to say about it and now I know that the recovery is as different as the person who is going through it. Thanks for all of your posts. 

So here's the question: How long did you have your feeding tube after treatment is complete? I imagine we'll wait at least until the 8 week post treatment PET scan is done and of course he's eating again. I have a feeling the answer to this question is the same as the pain question - very unique to the person... Also, how do they get the mushroom cap out of the stomach?

Thanks in advance for your answer, Nancy

 

MrsBD

I did not have a feeding

I did not have a feeding tube, but can tell you that for me, the sore throat and swallowing issues lasted for three months after treatment ended. Slowly things have gotten better. At four months out, I can eat most food except spicy or cold. The ENT told me it takes six months to a year to heal. As you said, everyone is different. Blessings to you and your husband during the healing phase.

Sailor123

Hi.
i just had my peg tube

Hi.

i just had my peg tube removed. I had it for nine months total. Too long, but I got very attached to it and liked putting medicine and herbs in it. 

They just jerk it out. It is a trip to say the least. It's quick but uncomfortable. 

Just be sure he's eating well before its removed. I needed it for months following treatment. It's awfulily nice having it gone now.

s

phrannie51

I had to cheat to get mine out at

10 weeks post treatment.  I wasn't using it, but damn they were being stubborn about my weight....they wanted me to gain 5 lbs...  So I finally donned a pair of Danner steel toed boots and gained weight that way.  They never let me weigh in again with shoes on....LOL.

p

wmc

phrannie51 said:

I had to cheat to get mine out at

10 weeks post treatment.  I wasn't using it, but damn they were being stubborn about my weight....they wanted me to gain 5 lbs...  So I finally donned a pair of Danner steel toed boots and gained weight that way.  They never let me weigh in again with shoes on....LOL.

p

Put quarters in your pocket. Phrannie

I was told if I lost any more weight they would not do the surgery until I was gaining or at least stable. I had lots of quarters in my pocket because they made my take off my shoes. Thank god for the quarters or I would not have made it.

 

Welcome Nancy and sorry you need to be here. You did find the best support group there is. I only had the NG tube until I was allowed to swallow. So the others will help answer you. I just wanted to say WELCOME

Bill

thennies61

wmc said:

Put quarters in your pocket. Phrannie

I was told if I lost any more weight they would not do the surgery until I was gaining or at least stable. I had lots of quarters in my pocket because they made my take off my shoes. Thank god for the quarters or I would not have made it.

 

Welcome Nancy and sorry you need to be here. You did find the best support group there is. I only had the NG tube until I was allowed to swallow. So the others will help answer you. I just wanted to say WELCOME

Bill

I think my peg was in for

I think my peg was in for about a month after.I had to eat and gain weight before the doctor would pull it out.

yensid683

Peg tube removed

I had my PEG tube for roughly 5 months.  I stopped using it 4 months after treatments ended and could demonstrate that I was eating and started to gain some weight.

I had taken to charting what meds I took during treatment and recovery so it wasn't any more difficult to chart my food intake and record calories.

I brought my 'chart' as it were to my RO visit in October and asked to have it removed, citing its non-use and showing them my intake chart.  They objected, saying that I should keep it for another 6 months!  I demanded it be removed, I was eating normally for the most part (had to have water to sip while I chewed) and I was gaining some of the weight I lost back. 

I never tried the shoes or quarters trick, though cell phones and slamming down a liter of water did wonders at weigh in...

OrchidNancy

yensid683 said:

Peg tube removed

I had my PEG tube for roughly 5 months.  I stopped using it 4 months after treatments ended and could demonstrate that I was eating and started to gain some weight.

I had taken to charting what meds I took during treatment and recovery so it wasn't any more difficult to chart my food intake and record calories.

I brought my 'chart' as it were to my RO visit in October and asked to have it removed, citing its non-use and showing them my intake chart.  They objected, saying that I should keep it for another 6 months!  I demanded it be removed, I was eating normally for the most part (had to have water to sip while I chewed) and I was gaining some of the weight I lost back. 

I never tried the shoes or quarters trick, though cell phones and slamming down a liter of water did wonders at weigh in...

You all are a clever bunch!

You all are a clever bunch! steel-toed Danners, quarters, cell phones and water - I'll pass it on!

My husband lost about 20 lbs, most of it during hospitalizations for aspiration pneumonia, critical low magnesium levels from the cisplatin, a fentayl patch that was too strong and all but killed him. Thank God for naloxone to reverse it when he was barely breathing.

I will start a new thread on the fentanyl - it's a long story.

Thanks all and Gob Bless, Nancy

jackflash22

Peg cap

they cut my peg cap off and pushed it into my stomach. It passes normally. The other way is to go down the throat into the stomach the same way as it was fitted and drawn out with a probe. Under sedation.

OrchidNancy

jackflash22 said:

Peg cap

they cut my peg cap off and pushed it into my stomach. It passes normally. The other way is to go down the throat into the stomach the same way as it was fitted and drawn out with a probe. Under sedation.

Well who wants sedation?! I

Well who wants sedation?! I wonder if the mushroom cap that we saw in an endo picture just dissolves over time. It looked like a plastic funnel, but maybe it is degradable.

Hondo

Hi Nancy

 

Welcome to the family, we are all different as you can see, some 10 weeks other 10 Months, it all depends on how fast his bode gets rid of the poison. But after a month or so he should start to see or feel something, the best thing is that he crossed the finished line.

 

Hondo   

Loves2read

We're just behind you

My husband finished 34 treatments on 2/16. Still using PEG exclusively. He's super eager to be better, and is pushing through the fatigue and pain to get back to his normal routine. (I worry, but it's how he's handling it, so that's good, right?)

He stopped eating right around the 2nd of 3 Cisplatin rounds. Everything that went down that week came back up, so the doctor told him just to use the tube. That was around Jan 20.

While he wants to try eating by mouth, the throat pain is still intense. He's on 100mcg fentanyl patch, and wants to change it right at 48 hours. Over the weekend he tried a little bit of food, but says it's best to do it at home, close to the bathroom in case it doesn't stay down.  

His scan is scheduled for 12 weeks out (mid-May), so I suppose he'll have the PEG at least until then.

 

CivilMatt

PEG TUBE HERE

Nancy,

2 weeks post to popping PEG.

Mushroom cap came right out, small discomfort, hole closes up immediately and healing begins.

Happy eating,

Matt

Banditsdream

phrannie51 said:

I had to cheat to get mine out at

10 weeks post treatment.  I wasn't using it, but damn they were being stubborn about my weight....they wanted me to gain 5 lbs...  So I finally donned a pair of Danner steel toed boots and gained weight that way.  They never let me weigh in again with shoes on....LOL.

p

Lead

I had to laugh out loud when I read this.  My husband is a trap shooter and would put lead shot pellets in his pockets for his weigh-ins...

OrchidNancy

Loves2read said:

We're just behind you

My husband finished 34 treatments on 2/16. Still using PEG exclusively. He's super eager to be better, and is pushing through the fatigue and pain to get back to his normal routine. (I worry, but it's how he's handling it, so that's good, right?)

He stopped eating right around the 2nd of 3 Cisplatin rounds. Everything that went down that week came back up, so the doctor told him just to use the tube. That was around Jan 20.

While he wants to try eating by mouth, the throat pain is still intense. He's on 100mcg fentanyl patch, and wants to change it right at 48 hours. Over the weekend he tried a little bit of food, but says it's best to do it at home, close to the bathroom in case it doesn't stay down.  

His scan is scheduled for 12 weeks out (mid-May), so I suppose he'll have the PEG at least until then.

 

Loves2read

Sounds familiar - My husband finished radiation 2/5 (2nd of 2 cisplatins was 1/9) and was eager too, but the body didn't comply too well until just this week. His energy level is much better and as of this week he's working full days again (with his usual hour nap after lunch - benefits of being your own boss :-)  He wants to eat but can't always tolerate food and then just goes back to the tube feeding. He also only tries eating at home - for the same reason. When he does tolerate it, it is very small portions and easy food like yogurt or some peach slices.

His radiation doc said they'll keep the tube most likely through April. He'll have a PET scan in early April. This will be at 8 weeks. I think the 12 week out plan would be better though to be certain the full effect of treatment is seen and no false positives.

The foamy saliva and need to spit has just recently improved a lot. Don't know if that's something your husband is dealing with too, but I'm REALLY happy that's improving. In the past week the pain improved significantly (starting about 30 days post treatment). He's on liquid Norco/Vicodin 4-5x a day. The fentanyl patch almost did him in - too strong of a dose - twice he needed resuscitation and reversal with narcan. (This was in the first week on the patch)

The doc has him doing a lot of neck therapy (with speech therapist twice a week) and thinks the pain is more related to neck muscles than the throat mucosa. My husband said that it feels like the food is getting stuck in his throat. 

Good luck - I hope he continues to improve - thanks for your input.

 

 

OrchidNancy

CivilMatt said:

PEG TUBE HERE

Nancy,

2 weeks post to popping PEG.

Mushroom cap came right out, small discomfort, hole closes up immediately and healing begins.

Happy eating,

Matt

Hi Matt

Congrats on the PEG removal!

So the mushroom cap just collapses and comes out through the stoma with the rest of the tube. Thanks for clarifying that. I thought it was hard plastic and wouldn't come out through the stoma.

I hope you're enjoying life that's close to normal again, Nancy

Hondo

CivilMatt said:

PEG TUBE HERE

Nancy,

2 weeks post to popping PEG.

Mushroom cap came right out, small discomfort, hole closes up immediately and healing begins.

Happy eating,

Matt

Hi Matt

Glad to see you got rid of Peggy, that old girl can be hell to live with sometimes.

 

Tim