Hey guys (and girls). I'm Garrett. I'm a 24 year old male living in the Philadelphia, PA area. I was diagnosed with undiff. sarcoma on Sept. 29th, 2011. Not sure what stage I was. Although, due to ignorance on mine (and my doctors) parts I think I've had cancer much longer. Maybe since around age 17. For a while, they thought I had a large hemangioma (benign vascular tumor) in my tongue.

Since my cancer diagnosis, I've gone thru 5 cycles of chemotherapy as well as 35 IMRT sessions. On 9/7/12 (about 3 weeks ago) I underwent a near total glossectomy. I still have my tongue base along with a free flap reconstruction from my left leg.

I had a PEG tube (still present, obviously) and a tracheotomy (removed, but healing - 1 week today).

Upon my follow up I was told the marginal biopsies came up negative. So at the moment, I'm cancer free from what I understand.

I can swallow liquids, I'm trying to ween myself off the PEG tube. They expect me to drink 7 ensure/boosts per day. Yesterday I was able to drink 1 entire one for the first time... That made me kinda happy.

My speech is not great, but I'm definitely understandable.I have complete confidence in working on "by myself". I have great family and friends to talk to all the time.

I have come here for support and advice. They say a lot of people in my type of situation don't really end up chewing stuff again and remain on a mostly liquid diet.

I was somewhat of an athlete before and Im having some concerns about getting the proper nutrition to fuel my body as time goes on and I hopefully return to a normal lifestyle.

I know it's only be 3 weeks, but I'd like to hear what some of you near total glossectomy patients are eating... if there's anyone else out there?!?!

Any thoughts are greatly appreciated.

Garrett,

Sorry to have to be here but I'm glad you found this site. While we don't share the same concerns presently there are many on this site that will be able to share tons of helpful experience. The only thing I can suggest is instead of the OVC Boost/Ensure go thru the pharmacy department and get Boost VHC (Very High Calories) which has a whopping 560 cals in the same small can. Also keep up that positive attitude.

Welcome, Garrett!

Look for posts by misskate, who had a total glossectomy five years ago at age 33. During her treatment she kept a blog of her experiences, and she's still active on the OCF boards -- a real inspiration.

Welcome to OCF, Garrett! Im not far from your area, up here in Allentown. So sorry to hear what you have gone thru at such a young age.

There have been other here with similar situations who have returned to eating. They may not eat like how they were before cancer but they are able to eat a little. Dont give up hope. There are things to help like physical therapists and speech pathologists. There is also a therapy which uses electrode to stimulate your swallowing muscles. I would suggest before you push yoru self too much with swallowing you have a barium swallow test to make sure you are physically able to do it. This can be done by a speech pathologist. A dietitian may also be helpful to you.

Best wishes with your recovery!

Thank you all. I should have mentioned, I've had two visits with a speech pathologist. I did not have a barium test, but I swallow liquids with enough ease that she did not seem to think anything of it (at least that's my assumption). They are telling me to try to drink as much of the ensure and water as possible as opposed to using my PEG.

Its use it or lose it with swallowing. Its amazing that those muscles can 'forget' how to work. Drink as much as possible to keep them active and eventually it will become easier.

Good luck!

Garrett,

Good time for you to Complete a Signature Line so posters don't have to search for your history to understand or reply. Helps others when you post as well to know where you have been or are headed.

Hi Garrett welcome - been there done that... Are you at a ccc? Usually you type of cancer is treated with surgery first thn chemo and rads... The other way around may make it harder to heal. I lost 1/3 of my tongue, and 40 nodes - did they do a neck dissection too? You should regain you ability to chew - start with soft small bites. Maybe omelette, soft veggies, (steamed), egg salad etc... Congrats on the ensure I used to power chug 4 a day highly unpleasant - painful - but it did the trick. Try adding protein mix to your drinks it will help you heal. Hugs and welcome and sorry you have to be here.

Not sure of the CCC reference. They used chemotherapy and radiation as an effort to save my anterior tongue, but I it failed. Although radiation and chemo may have slowed down the healing process I seem to be doing just fine. I guess I was young enough and otherwise healthy enough for the factors not to play such a big role.

I have no problem chewing, but since 90% of my tongue is just a flap that looks like a tongue, I can't "send it back" towards my throat, although so far I can raise the back of my tongue, almost normally. Therefore, my teeth are kinda just chomping away with no feel. I think it will improve, but I can't even get down the noodles in soup so far. At least not at rate where it seems to pay off.

Amd yes, right neck dissection.

Thanks for the protein suggestion. The protein mix could also add a few needed calories.

Hi Garrett and welcome, I have had about 70% of my tongue removed. At week three I could never have swallowed. When I finally passed the swallow test, I started use to use my blender and blended things like chilli,soup,raviolies/sauce, potatoes and gravy and then just kinda drank that. Then slowly I would take things like a tindy piece of ravioli and a bunch of sauce and kind of move that around till it went down. That went on for a couple weeks and then my dad started taking me to "Old Country Buffet". The key here is the "Buffett". It was there that I really was able to experimant and practice eating all sorts of things. I generally would eat everything ia a sauce or something so it would slip right down my throat. It got prggessivly better after that. I still have some difficulty's with things that are to dry or need alot of chewing as it is still difficult to move food around too much. I mean I still use my finger every day to dig stuff out of the roof of my mouth. It sounds like if the back of your tongue can lift that will be a big help in swallowing. I also think the have some devices you put in your mouth that can give you more control also. Sorry but I can't remember the name.

Garrett, a CCC is a comprehensive cancer center. They are the top cancer facilities in the US. A whole team of specialists discuss each individual case and work together to develop a treatment plan for each patient. They follow NCI guidelines which lays out what course of treatment will give the patient the best outcome.

Cancer Centers

Thanks for the clarification about the CCC's. So Yes and No. I went thru Penn Medicine as a whole. They have two cancer centers. My doctor, who happens to specialize in sarcoma practiced out of the center that was not designated a "CCC" but he's one of the two or three sarcoma specialists within 40 or 50 miles of my home... at least. I felt he was a good choice. In my opinion, definitely took great and consideration making treatment plans for me.

I also know Penn Medicine happens to have something called a "tumor board" where large teams of different specialists discuss treatment options (I'm not sure if it was for all patients, but I know for a fact I was discussed).

I'm by no means a medical professional, but I do have an educational background in bio/chem so explanations had the potential to go in depth. I asked tons of questions and felt pretty good about most answers. I'd say the only thing I really rushed into was the surgery itself, just because I personally believe I've had the mass for a long time and wanted it out.

Wendy - Thank you for that awesome reply. I appreciate it.

Thank you all.