I just found this site today and sure wish I had known about it last year. It's been a rough and crazy journey to this point and I know it's not over yet. I found this site when goggling about granulating tissue around my PEG tube. I'm a little over a year out from my surgery and still having quite a few problems. I could use some helpful information on quite a few things and hope to find that here.

Thanks

Welcome to OCF, Sandy. There is lots of experience here so you are sure to get many of your questions answered by someone who has already dealt with the various issues. don

Sandra,

Congrats on the NED and welcome to this site.

Welcome to OCF! Im sure we will be able to help you with your ongoing issues. Ive use a feeding tube for several years, I will be happy to help you with your concerns.

Hi Sandra, and welcome! There's lots of great advice, ideas and compassion here for you.

Thank you for the encouragement. Christine, you may regret the offer of help! :-) So much information here to look at but then I'm sure I'll have many questions.

Sandra, welcome to the family. We're all here for help and support. Congrats on your recent scans!

I should have been more specific on all of my information when I posted the first time.

I was diagnosed in May of last year after 2 core biopsies were done in the roof of my mouth. (SCC) I had a PET scan praying that it was confined to the mouth area and hadn't traveled to my lungs. Thankfully it was in my mouth and neck area only. The folks at our local Radiology clinic had told us that this was a stage 2 cancer. Within a week I was at UAB hospital in Birmingham, AL at the ENT clinic seeing Dr. Scott Magnuson.
He started explaining everything that they would have to do and we really got an information overload. To get their entire team together with the reconstruction team was to take a while and the surgery wasn't scheduled until June 20. After 9 1/2 hours of surgery and 8 days in the hospital I was sent home to let everything in my mouth heal before getting ready for the chemo/radiation that was next. I had to have over half of the roof of my mouth along with bone out, neck dissection with lymph nodes in both sides involved. They took a flap of skin, bone and artery from my left arm and a skin graft from my left thigh to reconstruct the inside of my mouth. Oh, they also took all my teeth. It was also staged at a 4+, how the first RO was so off, we don't know, inexperience, lack of knowledge? Just glad we were sent on to the best people for the job!

In August when they were preparing everything for me to begin my treatments, they found problems, did another PET scan and found the cancer was back with a vengeance, in my mouth and again in my neck and also at the back of my tongue. So soon after my first surgery there wasn't anything they could do at the time but amp up the radiation they were planning. I had 3 chemo treatments in conjunction with my 35 radiation treatments. I started with cisplatin but that messed up my blood counts so the last two were carboplatin. I had a lot of trouble with nausea and vomiting and almost dehydrated on a few occasions. Finally graduated with a lot of issues.

I've had a lot of problems with swallowing. The lack of saliva has naturally, complicated it even more. Last week they checked my throat and found a web of tissue, they think scar tissue, with a very small opening. It was stretched and they think it should help when the swelling goes down. I have a lot of problem with anything other than liquid. I'm doing a little better with thicker broths and such now but can't do much with anything else. Particles are especially hard for me to deal with. Do you have any advice on this? I can do ice cream, shakes and the broths/soups of like chunky chicken pot pie soup. I'm beginning to do a little with very soft vegetables but still having trouble with that. I'm dependent on my PEG tube for the most of my nutrition with usually one nutritional shake a day. I really want to get rid of the Peg but know it's there until I can eat enough to hold my weight and I get very frustrated because I can't eat. Don't get me wrong...I'm very thankful and blessed to be alive and I know that. If I have to keep the PEG the rest of my life I at least have a rest of my life to have it. I've also had a problem with granulation tissue underneath my tube. Went to the Dr. Monday and they used silver nitrate to hopefully take care of that.

Sandra,

I can't offer the advice you are looking for but I'm sure you will hear from plenty of people soon.

Welcome Sandra, I am a tongue cancer survivor, had about 70% or more of my tongue removed. When I started to try to learn to eat. I purraid my food to about the constancy of a shake. So things like chilli, or ravioli, or vegtable beef stew, mashed potatoes and gravy etc I was lucky enough to have a vitamix but man I was in heaven. Then once I could handle that, I went to buffet resturants as much as I could so I could experiment with diffrent textures, flavors etc. These two things really helped me to start eating again. It sounds like you may have more issues but I guess I am trying to say, Dont' give up!

Thank you Wendy. I will try that.