Today was hubby's 3rd Chemo and 14th rad. Whew! it's been a crazy ride so far with the BP crashes and muscle spasms AND treatment. But time is passing and faster then I'd hoped. This weekend seems to have triggered the start of our next phase now.
Hubby has still been eating regular meals with in-between smoothies and lots of ice cream and high calorie drinks. But this past weekend the sores have begun to appear in his mouth and he's finding it more difficult to swallow. They made an appt. today for consultation to arrange for the PEG. Not unexpected but I know he was hoping to last a bit longer. Lots of new scripts today to combat thick muccous and the sores in his mouth. Looks like it's time to really start digging in our toes and bucking up for the fight ahead. we're ready tho. All the information and ecouragement shared here has armed us with the best possible ammunition to get thru this.
Thank you! everyone, for being here and sharing your experience and helping words.

Its not an easy road. Glad you have found OCF to lean on for support. Hang in there, its going to get pretty rough. Just keep up the nutrition 2000-3000 calories per day and minimum 48oz water. Hang in there, we are all pulling for you both.

MST,

Remember the Peg is not the only way to go. Many of us, myself included, opted not to get the Peg. It was not an easy route but I made it and coincidentally or not I have never had any swallowing problems which means I was forced to continue swallowing so if you do choose the Peg route make sure he continues to swallow daily and often. For more info read all the swallowing problem related posts on this site. If I had to do it over again I would still not get the Peg. JM2C's

MST,

My experience was the opposite of my friend David's. As long as he's getting the calories & nutrition, then he can opt for no Peg, but I stubbornly waited too long to say yes to it, and I (again stubbornly) still didn't use it for anything but meds. I wanted to Eat with a capital E and be closer to "normal" (one of my personal bits of denial), but it was so painful that it became nearly impossible.

I ended up in the hospital with emergency surgery for a twisted and gangrenous colon, 6 to 8 rad treatments short of the what my RO wanted me to have. I was in-patient for a month as I was severely undernourished among other problems.

So I'm not saying that what happened to me will happen to everyone, because it doesn't. David is just one example of that among many, but please encourage him to say "yes" to the Peg if he needs it.

Lani

My husband is a little over halfway there too and I am so thankful he has the PEG. His mouth is crazy sore and swollen. Water and GU (similar to gatorade but less sugar) are about all he can tolerate by mouth these days. Jevity 1.5 is providing all of his nourishment right now. It's a higher fiber formula to try to combat digestive problems that accompany all of this "fun."

Likewise I am very thankful I have a PEG. I can imagine not having it and know I would have lost a lot of weigh and been very sick.

My ENT always encouraged me to keep swallowing a few serving of pudding, jello, whatever everyday day. At times I found even that little bit to be hard.

After week four, my MO seem to be happy that I was still swallowing most of my fluids (juice and water).

Get the doc to write you a script for a portable suction machine to help get rid of the mucous. Insurance should cover and if it doesn't, they are somewhere between $20 to $40 a month to rent.

I did make it through wihout a peg, but very few do. I also did not have chemo. I lived on Ensure Plus. If the RO wants him to have the peg, he shouldn't wait too long. He needs all the nutrition he can get to heal properly. And just because he has one, he doesn't have to use it exclusively. He should keep trying to take as much as he can orally and must keep swallowing or he will lose his ability to swallow. Trismus can be another issue once you are on the peg. He should he stretching his jaw muscles - try yawning or similar.

Take care,
Eileen

Hi folks,
Just home from our consult with the GI Dr. Hubby's appt to get the PEG put in is for Friday. And YAY!!!! he gets to take Friday off from radiation. He isn't suppose to eat or drink for 6 hours prior to the procedure and that sets him up for not being properly hydrated for his shot (ethyol) and radiation. Of coarse he'll have to make up the missed day at the end of treatment. ~shrug~ still happy to have a long weekend to buff him up and get him ready for the next week. I'm hoping it will also help the ulcers on his tongue to have that extra day to heal before we start all over again. ~am I sounding too optimistic?...naaah, it's always good to look for the bright side~ Thank you, for all the advice and comments. Yes we have read all the PEG posts and hope we'll be ready for this. Hubby is not intending on using it any more then absolutely necessary but he does agree it will be needed to make sure he keeps the best possible nutrition thru all of this as possible. Right now his calorie intake is good. I just find that getting enough hydration seems to be the biggest problem right now. Just never seems to be enough wake hours to get all the fluid necessary. He sips and drinks at every turn and seems still to fall short by the end of the week. Since he is up in Chemo every day to get his ethyol shot they let us know that if he is not getting enough hydration just come in early and they'll give him some by IV. That is a big relief to know he has that as back up. I feel like all I do is push fluids, push fluids and he has to get frustrated with me but never snaps back. I have to give him all the credit he is a very good patient and I doubt I could be as good tempered as he. BIG KUDOS! to all of you that have had to go thru this. Being the caregiver might be worrisome and stressful. But being the cancer patient is such a tremendous challenge. You are all HEROES in my book!

MS T,

Well I already put my 2 cents in earlier, and I have to say I'm glad he's getting the PEG. As the rad treatments progress, so will the burning in his mouth. I just wanted to mention 2 things I didn't mention in my earlier post:

I was way too dehydrated, so they started to hydrate me by IV. If done at chemo, they just add another bag - no problem. Well, that was one less thing for me to worry about, which I was grateful for. There was just no way for me to get enough fluids on my own.

I was staying in housing for out-of-towners in treatment, run by the Am. Cancer Soc. As much as I stubbornly DIDN'T use the tube, there was another patient there who absolutely refused to try to swallow anything at all. His wife would come out to the dining area, so worried, and tell us that she couldn't even get him out of the suite, except for treatments. She tried & tried to get him to swallow anything, but he just wouldn't, and that was that. I left before they did (to the hospital, unfortunately, not home), but I often wonder how they fared after.

I hope that telling you my mistakes, and his, will help your husband (& you) to avoid them both.

Lani

Lani

Mrs T


Im so glad that your hubby is getting the peg tube. It will help him to keep the fluids up. Just dont forget to try to get him to still drink several times per day. He will be sore for a couple days after the surgery. Im sure while he is at the hospital, they will give him some hydration. Its really not a big deal to get that done.

Please be very careful about the hydration. I was dehydrated and malnourished and ended up being put in the hospital twice. That was with having the peg tube and also getting extra hydration. Since your husband is right in the middle of tx, now isnt the time to get behind on calories or hydration. To be completely honest with you, its going to get alot worse before it gets better. The roughest part of this is coming up so please try to get as much fluids into your husband as possible to help him avoid having a hard time.

If they dont ask you at the hospital, check about having a visiting nurse come out to help with the peg tube. My hospital sent one a couple times per week to make sure I was doing ok with it. She would help me do feedings and check it for any signs of infection. I was really surprised that option was available to me since I live about 35 miles from the hospital. My nurse helped me so much with the peg tube.

Best of luck on Friday.