Newbie - Need advice for my husband re PEG

Nancy24 · May 2016

I found this network by accident and have read many, many of the posts. Thank you for being here!!

Brief intro: My husband is 66 years old and other than the recent news about cancer, he is healthy and physically fit. (Side note: 2 years ago he had a partial shoulder replacement and last year he had both of his knees replaced at the same time.) On Saturday, May 7 he noticed a lump on the left side of his neck. On May 9 he saw his primary care physician who immediately ordered a CT. CT was done on May 10 and later that day we were in the doctor's office as she explained that this needs to be looked at by a specialist. The mass in the lump is approximately 4cm. She had already spoken with one of the two best head and neck surgical oncologists in our area. We were able to see him on May 13. He did a biopsy of the lump and used a scope to look down his throat. He couldn't see a tumor but guessed that it was 2cm or smaller and hiding in the lingual tonsils. He also guessed that it was HPV related oropharynx cancer but wouldn't know until he had more information. The biopsy came back malignant and we received the good news that the p16 stain came back positive for HPV. My husband smoked for many years (ages 18-early 30's) and used to be a heavy drinker (quit 6 years ago) - the surgeon knows all of this but we haven't asked him how all of that factors into treatment and survival rate. The PET scan was supposed to be on May 20 but due to a power outage and my husband's trip to visit his dying mother, it has been rescheduled for May 27. The surgeon said that he is T1 (based on his assumption of a 2cm tumor), N2a, Mx which makes him Stage IV.

The surgeon is presenting my husband's case to the Tumor Board at the hospital on May 25. In the meantime, he has discussed options with us and risks to surgery, e.g., nerve damage, 100% chance of pain, 100% chance of swelling, speech and swallowing problems for a few weeks and that he would need radiation and possibly chemo afterwards (chemo if there is extra capsular spread). We did not discuss the side effects of radiation so I thank all of you who have shared your stories here. My husband chose not to meet with a radiation oncologist at this point. He wants to wait until after surgery. He wants to do the surgery so that he'll know the primary source, the size of the tumor, and whether or not he really needs chemo. The surgery would include neck dissection on the left side, possibly also the right. Surgery is scheduled for all day June 9 (we were told 8-12 hours).

My question to all of you is related to the PEG tube. The surgeon mentioned that he might need one at some point during radiation therapy and he doesn't want a gastroenterologist sticking a tube down my husband's throat post-surgery so he plans to leave a tube in place the goes through his nose and down his throat. My husband's gag reflex immediately kicked in and he said he didn't want a tube down his throat after surgery and he won't want a PEG tube. I'm guessing he doesn't want the PEG because he's associating it with his dying mother who currently has one in place. Anyway, I'm going to push for him to let the surgeon leave the tube down his nose because it sounds like insurance in case he might need the PEG at some point. He isn't aware of all of the brutal side effects of radiation yet. Has anyone ever had this tube that the surgeon described to us? What's it like to have it in place for what could be 2 months?

Thanks in advance. I'm sure I'll have lots more questions as we take this journey.

Barbaraek · May 2016

Nancy

Welcome to the board...but I'm sorry you and your husband have need of it. There really isn't a definitive answer about feeding tubes and PEGs. Some need them and some make it through without. It is not a matter of "willpower". It has to do with whether or not you are able to take in sufficient nutrition orally. Some folks manage to do this throughout therapy and others due to complications like severe mucositis or reactions to chemotherapy and radiation just cannot swallow or manage sufficient nutrition. Some people can lose a lot of weight because they had it to spare, and others start out with not any to spare. It's all very individualized.

My husband had to have s PEG inserted at week 2 because he could no longer swallow. Much of his radiation was directed at the nose and pharyngeal area around the palate. He had it almost a year...probably longer than necessary but he had it in his head that he had to gain back the 25 pounds he lost (he was only about 158 pounds before diagnosis). And he had some early choking episodes when trying "real" food again and so he weaned off the tube very cautiously. Personally for us the PEG was both a blessing and a curse. I'm grateful it did what it needed to do, but I'm even more grateful it's finally gone.

I think you should weigh all the factors and listen very carefully to what your team recommends. Best of luck to you both. We'll be rooting for you.

Barbara

Nancy24 · May 2016

Barbaraek said:
Nancy
Welcome to the board...but I'm sorry you and your husband have need of it. There really isn't a definitive answer about feeding tubes and PEGs. Some need them and some make it through without. It is not a matter of "willpower". It has to do with whether or not you are able to take in sufficient nutrition orally. Some folks manage to do this throughout therapy and others due to complications like severe mucositis or reactions to chemotherapy and radiation just cannot swallow or manage sufficient nutrition. Some people can lose a lot of weight because they had it to spare, and others start out with not any to spare. It's all very individualized.

My husband had to have s PEG inserted at week 2 because he could no longer swallow. Much of his radiation was directed at the nose and pharyngeal area around the palate. He had it almost a year...probably longer than necessary but he had it in his head that he had to gain back the 25 pounds he lost (he was only about 158 pounds before diagnosis). And he had some early choking episodes when trying "real" food again and so he weaned off the tube very cautiously. Personally for us the PEG was both a blessing and a curse. I'm grateful it did what it needed to do, but I'm even more grateful it's finally gone.

I think you should weigh all the factors and listen very carefully to what your team recommends. Best of luck to you both. We'll be rooting for you.

Barbara

Thanks, Barbara. I know that

Thanks, Barbara. I know that there's no way to know whether he'll need a PEG or not. He can't afford to lose much weight and I'd rather be safe than sorry. Hopefully someone in this forum had surgery before radiation and needed a PEG and can tell me how that worked to get the PEG inserted.

wmc · May 2016

Welcome to H&N group

Welcome, and also sorry you need to be here. I only had an NG tube so I will let the others answer your question on that.

My tumor was just above and touching my vocal cords and I have bad lungs so they had to do a full laryngectomy and also as a precaution, did a neck dissection on both sides. This was done so if it came back it can't go there. Over the last several years I have seen so many that only did one side of the neck. Many of them had to have the other side done later. Like my surgeon told me after, it only takes about 20 minutes longer to do both sides. If, he is given a choice, I would have both sides done. They took out 48 glands on the left and 38 on the right side. You will have some nerve damage as they have to cut through so many, but all I have is that the left side is numb from my chin to my ear. Now it might be that way just from the laryngectomy as well. They did cut from ear to ear, and they got all of the tumor, 3cm x 2.5cm x2.5cm. the size of a very large grape. I have been clear ever since the surgery for 2.5 years and very good odds it won't come back. I never had to have chemo or radiation, just an 8 hour surgery, which I slept through just fine. It is very hard for the loved ones as all the worrying and wondering and I just slept. With having a laryngectomy it is common to be in ICU for 24 to 48 hours so I was mentally prepared. When I woke up [ I had no voice] so I wrote the nurse, was I in ICU? She smiled, and said I was in my room, not ICU. I knew right then all my prayers were answered and have been great ever since. They put in a prosthesis in my neck and I have a voice as well.

I will keep you both in my thoughts and prayers. You are never alone in this. Just take one day at a time and only today matters. Later all the tomorrows come. When scared, worried, or just need an ear to listen, we all are here and really do understand. You both will do fine and get through this.

When you have questions for the doctors, and you will. Write them down and leave space for the answers. Just hand it to the doctor, he will answer them, and mine even wrote in the answers.

Bill

Josephwc · May 2016

Just finished two surgeries and now 5th week of radiation

I just had a free flap reconstruction of my tongue. (1/3 left side of tongue) and woke with the feeding tube still in from surgery. Feeding tubes are very uncomfortable but managable. My feeding tube stayed for one week. Unfortunately I had to be rushed back into surgery due to blood clots and when I woke the feeding tube was not there. My doc told me she didn't put it in this time so I would need to eat to keep it out. The problem was the icu doctor calls the shots and he insisted that I receive the tube before I really had a chance to prove anything. In the end I guess it was a wise choice but I hate the tubes.

I elected for radiation and it was a choice where the chemo was not needed. The radiation Dr. thought that I could handle treatments without if I made an effort to eat. I feel like I have made the effort and have relied on prosure and ensure powder to boost my take. The problem is now that I'm on the fifth week my throat is again in severe pain and is swelling shut. This morning I woke only able to whisper. I ate two poached eggs and have kept them down. I will fight through this but have to admit I am wondering now if I should have requested the tube again. I weighed 80kg when I was discharged and just this morning I weighed in at 74.3 kg. I'm worried but I only have until June 3rd. I can do this!

Will keep you posted if you like. Good luck.

PS Im 46 never smoked but did drink socially I have never worked out but am n relatively good shape. My employment,surgery and treatments are all in India but I'm from Maryland. Home soon after my treatment and I cannot wait.

Joseph

MarineE5 · May 2016

PEG Tube

Nancy,

I am sorry you are here asking questions, but as you can see, there is a lot of support here.

I had Base of Tongue cancer and wanted the cancer out of me. So, I had surgery to remove part of my tongue which included the insertion of a PEG Tube so I could get nutrition in me. I had the PEG Tube installed at the same time of the Surgery for the Base of Tongue cancer, along with a Trach and Radical Neck Disection.

At the Hospital, there was a bag hanging on a metal tree feeding slowly into my stomach. When I got home, the insurance company sent 10 cases of nutrition along with a metal tree like I had in the Hospital. I did as the Nurses showed me, but it just took too long to feed in my mind. One Nurse did show me how to feed using the Syringe as a funnel and pour the nutrition in. I tried that and it worked better for me as I could get one can in per 10-15 minutes. I needed 8 per day, but usually only did 7 as I felt full many days. It is best to have the cans at room temperature before feeding to avoid stomach cramps.

The Syringe is used to flush the Tube so nothing gets clogged in the hose. So flushing before and after each feeding is important. Once my tongue and throat were healed and the Trach removed, I could move to soft foods orally along with some nutrition cans. I did a combination of both to try and get as many calories in me to keep the weight on.

After a period of healing, came my Radiation treatments. I continued the combination of soft foods orally and cans of nutrition via the PEG Tube. As I moved into about week 4 or 5 of the Radiation, the sores became a problem so eating orally was less and relied on the PEG tube more once again. The important part of this is to continue swallowing even if it is some water daily so we don't lose that motion.

Once Radiation was completed and the sores started to wean, I increased eating orally and the PEG Tube was removed about 2 months after my last Radiation treatment. The Radiation Oncologist wanted to see me maintain my weight before removing the PEG Tube.

I never had any major issues with my PEG Tube. We just need to follow the instructions given to us by the Nurses as far as keeping the insertion site clean and flushing the Tube before and after each feeding. I would crush my med's in a small bowl, add some room temperature water to them, and then suck the solution up with the syringe and push all that thru the PEG Tube hose. Some med's you can get in liquid form so that helps as well.

I hope this helps, my apologies for getting a bit long winded.

My Best to Both of You and Everyone Here

Nancy24 · May 2016

Josephwc said:
Just finished two surgeries and now 5th week of radiation
I just had a free flap reconstruction of my tongue. (1/3 left side of tongue) and woke with the feeding tube still in from surgery. Feeding tubes are very uncomfortable but managable. My feeding tube stayed for one week. Unfortunately I had to be rushed back into surgery due to blood clots and when I woke the feeding tube was not there. My doc told me she didn't put it in this time so I would need to eat to keep it out. The problem was the icu doctor calls the shots and he insisted that I receive the tube before I really had a chance to prove anything. In the end I guess it was a wise choice but I hate the tubes.

I elected for radiation and it was a choice where the chemo was not needed. The radiation Dr. thought that I could handle treatments without if I made an effort to eat. I feel like I have made the effort and have relied on prosure and ensure powder to boost my take. The problem is now that I'm on the fifth week my throat is again in severe pain and is swelling shut. This morning I woke only able to whisper. I ate two poached eggs and have kept them down. I will fight through this but have to admit I am wondering now if I should have requested the tube again. I weighed 80kg when I was discharged and just this morning I weighed in at 74.3 kg. I'm worried but I only have until June 3rd. I can do this!

Will keep you posted if you like. Good luck.

PS Im 46 never smoked but did drink socially I have never worked out but am n relatively good shape. My employment,surgery and treatments are all in India but I'm from Maryland. Home soon after my treatment and I cannot wait.

Joseph

Thanks for reaching out to me

Thanks for your reply, Joseph. I figured the feeding tube would be uncomfortable. I probably wouldn't want it either. Maybe I can get him to meet with the RO before the surgery so he'll better understand potential side effects and why he might need the PEG for a short period of time and therefore need the feeding tube in place after surgery.

Nancy24 · May 2016

wmc said:
Welcome to H&N group
Welcome, and also sorry you need to be here. I only had an NG tube so I will let the others answer your question on that.

My tumor was just above and touching my vocal cords and I have bad lungs so they had to do a full laryngectomy and also as a precaution, did a neck dissection on both sides. This was done so if it came back it can't go there. Over the last several years I have seen so many that only did one side of the neck. Many of them had to have the other side done later. Like my surgeon told me after, it only takes about 20 minutes longer to do both sides. If, he is given a choice, I would have both sides done. They took out 48 glands on the left and 38 on the right side. You will have some nerve damage as they have to cut through so many, but all I have is that the left side is numb from my chin to my ear. Now it might be that way just from the laryngectomy as well. They did cut from ear to ear, and they got all of the tumor, 3cm x 2.5cm x2.5cm. the size of a very large grape. I have been clear ever since the surgery for 2.5 years and very good odds it won't come back. I never had to have chemo or radiation, just an 8 hour surgery, which I slept through just fine. It is very hard for the loved ones as all the worrying and wondering and I just slept. With having a laryngectomy it is common to be in ICU for 24 to 48 hours so I was mentally prepared. When I woke up [ I had no voice] so I wrote the nurse, was I in ICU? She smiled, and said I was in my room, not ICU. I knew right then all my prayers were answered and have been great ever since. They put in a prosthesis in my neck and I have a voice as well.

I will keep you both in my thoughts and prayers. You are never alone in this. Just take one day at a time and only today matters. Later all the tomorrows come. When scared, worried, or just need an ear to listen, we all are here and really do understand. You both will do fine and get through this.

When you have questions for the doctors, and you will. Write them down and leave space for the answers. Just hand it to the doctor, he will answer them, and mine even wrote in the answers.

Bill

Thanks for your reply

Thanks, Bill. It's so good to hear that you're doing so well. I think the NG tube is what his surgeon is suggesting that he leave in. How long did you have it and was it uncomfortable?

Nancy

wmc · May 2016

Nancy24 said:
Thanks for your reply
Thanks, Bill. It's so good to hear that you're doing so well. I think the NG tube is what his surgeon is suggesting that he leave in. How long did you have it and was it uncomfortable?

Nancy

It was difficult for me.

Because of my extensive surgery and was not allowed to swallow anything for 8 days, not even an ice chip was allowed in my mouth and I swore I would not swallow it. I had to suction and spit out all saliva. Now 8 days is not a long time for most but I had already lost weight and went from 145 to 126 lbs. My stomach had shrunk because I was aspirating and coughing up blood before they found what was wrong.

The NG was not uncomfortable and I only had to have it for 8 days. I was not allowed to swallow anything and could not even put an ice chip in my mouth even if I would suction it out. I didn't do well with the feeding, but most all do fine.

Please do not base anything on my experience as it is very rare to have the problems I had. Most everyone else that had this had no problems at all.

If you click on the side on WMC it will take you to my story, and expressions will have photos [not real bad] just my journey

Bill

Nancy24 · May 2016

wmc said:
It was difficult for me.
Because of my extensive surgery and was not allowed to swallow anything for 8 days, not even an ice chip was allowed in my mouth and I swore I would not swallow it. I had to suction and spit out all saliva. Now 8 days is not a long time for most but I had already lost weight and went from 145 to 126 lbs. My stomach had shrunk because I was aspirating and coughing up blood before they found what was wrong.

The NG was not uncomfortable and I only had to have it for 8 days. I was not allowed to swallow anything and could not even put an ice chip in my mouth even if I would suction it out. I didn't do well with the feeding, but most all do fine.

Please do not base anything on my experience as it is very rare to have the problems I had. Most everyone else that had this had no problems at all.

If you click on the side on WMC it will take you to my story, and expressions will have photos [not real bad] just my journey

Bill

Wow

Thanks for sharing your story, Bill. I have a call into the surgeon to get more information so we can make the right decision for my husband.

kdot2003 · May 2016

Hi Nancy,

Hi Nancy,

I had a PEG tube, never had a NG tube. I'm a nurse and I've place NG tubes down people's nose and taken basic care of them. The ones that are "long term" are very flexible and soft but the idea of something down my nose seems horrible. I'd take a PEG tube any day. I wasnt really given a choice. Doctor said you will get a port and you will get a PEG and I said ok. It was a good choice.

Sorry you are here. This is a good place to be though. My cancer story is very similar to your husbands minus the neck dissection. Best Wishes.

Nancy24 · May 2016

kdot2003 said:
Hi Nancy,
Hi Nancy,

I had a PEG tube, never had a NG tube. I'm a nurse and I've place NG tubes down people's nose and taken basic care of them. The ones that are "long term" are very flexible and soft but the idea of something down my nose seems horrible. I'd take a PEG tube any day. I wasnt really given a choice. Doctor said you will get a port and you will get a PEG and I said ok. It was a good choice.

Sorry you are here. This is a good place to be though. My cancer story is very similar to your husbands minus the neck dissection. Best Wishes.

Thanks for responding. I

Thanks for responding. I hear what you're saying about taking a PEG over an NG tube. But it seems that he needs to have a tube in place through his nose after surgery to enable a gastroenterologist to use that tube to see where to put the PEG. Maybe it's not an NG tube. It's on my list of questions to ask the surgeon.

Did you have surgery before radiation therapy?

Ladybug3 · May 2016

Nancy24 said:
Thanks for responding. I
Thanks for responding. I hear what you're saying about taking a PEG over an NG tube. But it seems that he needs to have a tube in place through his nose after surgery to enable a gastroenterologist to use that tube to see where to put the PEG. Maybe it's not an NG tube. It's on my list of questions to ask the surgeon.

Did you have surgery before radiation therapy?

Hi Nancy I'm new to this site

Hi Nancy I'm new to this site as well. My Dad has throat cancer & it's also in both lymph nodes in his neck. Dad will have a total of 35 radiation treatments along with 7 Chemo treatments. Today was his 20th radiation treatment and shoold have been his 5th Chemo but his Platlets were to low for Chemo today. When we 1st found out Dad had Cancer he weighed 124lbs so there was no question about him getting the PEG/feeding tube which was done before any treatment was done!! I took him to the Hospital and the Dr explained to me that he would go down Dads nose to his Stomach & blow his stomach up with air to see exactly to place the PEG/feeding tube once he did that he made an insecion and stitched his Stomach to his skin~~I know it sounds crazy I had to ask the Dr twice about it to make sure I was 100% clear on that!! I had to take Dad back 1week later for the Dr to remove the stitches. I'm very blessed & grateful that my Sister lives here in the same town because she & I rotate going over and doing his feedings he is VERY VERY HARDHEADED as most men LOL the RN at radiation actually showed me how to do the feedings. We have 2oz syringe that I draw up water with and pull the plunger almost off and put the syringe on the feeding tube part and I slowly take the plunger out and let gravity take its course and then I will pour 1 can in and when that can is empty I pour the 2nd can in and when it's done I take the syringe out close the feeding part rinse the syringe really good and connect it back and pour water into it to clean out the tubing because you never want that to get clogged. We have put 1 1/2 oz of Coke in it before because it was looking really nasty!! Dad is now 106.2lbs and the VA sent him cans that are a lot higher in calorie 2cans=1000 calories so at least we know he is getting 2000 calories per day. He is starting to get real hoarse and of course nothing taste right to him it's really really heartbreaking to see him or anyone for that matter to go through this and it is very stressful!!!! May GOD bless you all

And if anyone has any info to pass on to me I would greatly appreciate it as far as what Dad may could try eating or any info or advice I will take all I can get!!!! Again may GOD bless you all!!!!

Nancy24 · May 2016

Thanks Ladybug

So sorry to hear about your father. I appreciate you sharing the PEG tube details. I think there are links to some food threads in the Super thread (first posting in this forum). Good luck! Your father is lucky to have daughters who can care for him.

Nancy24 · May 2016

Possible Change of Plans

Thanks, everyone. We might have a change of plans, as in no surgery and clinical trial instead. Tumor Board met this week. Surgeon relooked at CT Scan prior to meeting and found the primary source - lingual tonsils BOT just off the midline (he looked there for quite awhile before he saw it - HPV positive led him to that spot). Tumor Board agreed. But they also thought, as a group, that even if he had surgery, he'd need Chemo and Radiation and who wants to undergo all 3 when outcome of just chemo/radiation would work. Radiation and Medical Oncologist appointments are next steps. I'll post separately about the potential clinical trial to see if anyone else has participated in it. The Radiation Oncologist we are going to meet with and who was on the Tumor Board is the Principal Investigator for this trial at this hospital.

AndrewP16nose · May 2016

My PEG kept me alive- actually wasn't a big deal

Hi Nancy. I had a nasal P16 cancer and lost my 5 front teeth, upper jaw, hard palate and all the inside of my nose. I didn't have the PEG put in until 10 days after I started radiotherapy and chemotherapy. I had lost 12 lbs in that time and had no saliva, no appetite and was struggling to swallow. Having the PEG put in was a breeze- they sedated me and I can hardly remember it. It was a bit sore for a couple of days but after that very easy to keep clean and use. I had to use it for 8 months because I needed a pretty full on facial reconstruction after the radio/chemo. It kept me alive. Having it out was also pretty easy. The surgeon put in a bit of local anaesthetic and pulled it out. Thank goodness for PEGs

Andrew

Snickers1234 · May 2016

PEG / mic-key tube

Sorry you have to be a user of this site but it's a wonderful place for real life information.

I had treatment at the U of M and the process at the time was 7 wks radiation with 3 chemo treatments with a 3 month break for healing and then removal of lymphnodes in my let side of neck, main site was my left tonsil. Some places do the lymphnode removal first and then radiation plus chemo if needed.

15 years later and I have had to have a PEG tube installed like Ladybug3 discribed, they blow air into your stomach with the tube running in your nose, punch a hole into it and insert PEG. It is unbelievable what they can do and what the human body can handle. I have had a G tube with the foot long extension hanging out and that is not very user friendly, if your husband has to have a feeding tube I would ask about a G tube that is a MIC-KEY style. You can google MIC-KEY feeding tubes and you see it's low profile button that you plug extensions into. Like Andrew stated thank god for PEG tubes and if your going to need one you have options, my Dr. didn't give me the option till I asked about it. I ended up having reflux so bad that I now have MIK-KEY that has one port going into my small intestine and another that goes into my stomach. I have a backback with a pump, you put 2 cans of Isosorce into a pouch and it ( at a very slow rate ) pumps it into my small intestine. I use the G ( stomach ) port for my medications.

I won't go into details but if you want more information let me know, PEG tubes are easy to use I do everything myself and keep mobile while having my meals and that was huge for me.

Bottum line is PEG tubes keep your calorie intake up till you can eat on your own or for some of us it's a perminent fix. I hope it will be just a short time your husband will need it but if not in my opinion they are not that bad.

Keep positive, take one day at a time, no one should have to deal with any of this but sometimes we get delt some pretty bad cards and you need to make the best of it as you can.

Good luck!

Snickers

Nancy24 · June 2016

AndrewP16nose said:
My PEG kept me alive- actually wasn't a big deal
Hi Nancy. I had a nasal P16 cancer and lost my 5 front teeth, upper jaw, hard palate and all the inside of my nose. I didn't have the PEG put in until 10 days after I started radiotherapy and chemotherapy. I had lost 12 lbs in that time and had no saliva, no appetite and was struggling to swallow. Having the PEG put in was a breeze- they sedated me and I can hardly remember it. It was a bit sore for a couple of days but after that very easy to keep clean and use. I had to use it for 8 months because I needed a pretty full on facial reconstruction after the radio/chemo. It kept me alive. Having it out was also pretty easy. The surgeon put in a bit of local anaesthetic and pulled it out. Thank goodness for PEGs

Andrew

Thanks, Andrew. PEG was a

Thanks, Andrew. PEG was a lifesaver for you. You look great, by the way!

Nancy24 · June 2016

Snickers1234 said:
PEG / mic-key tube
Sorry you have to be a user of this site but it's a wonderful place for real life information.

I had treatment at the U of M and the process at the time was 7 wks radiation with 3 chemo treatments with a 3 month break for healing and then removal of lymphnodes in my let side of neck, main site was my left tonsil. Some places do the lymphnode removal first and then radiation plus chemo if needed.

15 years later and I have had to have a PEG tube installed like Ladybug3 discribed, they blow air into your stomach with the tube running in your nose, punch a hole into it and insert PEG. It is unbelievable what they can do and what the human body can handle. I have had a G tube with the foot long extension hanging out and that is not very user friendly, if your husband has to have a feeding tube I would ask about a G tube that is a MIC-KEY style. You can google MIC-KEY feeding tubes and you see it's low profile button that you plug extensions into. Like Andrew stated thank god for PEG tubes and if your going to need one you have options, my Dr. didn't give me the option till I asked about it. I ended up having reflux so bad that I now have MIK-KEY that has one port going into my small intestine and another that goes into my stomach. I have a backback with a pump, you put 2 cans of Isosorce into a pouch and it ( at a very slow rate ) pumps it into my small intestine. I use the G ( stomach ) port for my medications.

I won't go into details but if you want more information let me know, PEG tubes are easy to use I do everything myself and keep mobile while having my meals and that was huge for me.

Bottum line is PEG tubes keep your calorie intake up till you can eat on your own or for some of us it's a perminent fix. I hope it will be just a short time your husband will need it but if not in my opinion they are not that bad.

Keep positive, take one day at a time, no one should have to deal with any of this but sometimes we get delt some pretty bad cards and you need to make the best of it as you can.

Good luck!

Snickers

Thanks, Snickers. A lot has

Thanks, Snickers. A lot has happened since my original post. We meet with the radiation and medical oncologists on Tuesday and then they are going to discuss my husband's case again with the surgeon. We won't know until Tuesday if he's going to have surgery so my question may not be relevant. But he will definitely have radiation so the PEG tube may be in my husband's future. Thanks for your advice about MIC-KEY. I'll read about it now so I'll know it's an option later.

caffinated1 · June 2016

Nasopharyngeal ugliness

i had a PEG tube inserted before any of my treatments, looking back I'm glad I did. Had trouble swallowing, couldn't produce saliva and thrush...good god almighty....those who know agree, it sucks. I was doing the gravity feed feedings with the cans of high calorie formula I was prescribed but that is a pain to do and it takes forever. I talked to my Oncoligist and got a pump. Most awesome thing ever! Fill the bag, hook it up to your "tether" and turn it on. Lay back and veg to Netflix.

Like others have said, the removal, mine anyway, was quick and painless. The nurse cleaned around it with alcohol and "pop" a quick tug and it's over.

If your husband has to go on an opioid diet for pain, try to add natural laxitives to the formula. Trust me, ain't nothing nice about any of that but doing little things like this make life a whole lot more bearable.

Hoping the best for you and your husband.

Hondo · June 2016

PEG

Mic-key low profile PEG tubes are by far the best, because they don’t leak like all the others. Last month made 4 years I been living on a PEG tube and I am doing as good as anyone, my wife makes all my food the way I like it then all I do is to blend it up and put it in.

Tim

Newbie - Need advice for my husband re PEG

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