Well my name is Eric and i am 29 years of fun and I am new here posting, i have been lurking here for some time now as I've been going through this cancer stuff since May 2014.
However Ill go ahead and give a brief run down to introduce myself and catch everyone up on the the lovely cancer timeline.

Found a ulcer looking thing on the left base of tongue around April 2010, went in about a month after it hadn't healed and got a biopsy, came back non cancerous, what a relief! Fast foreword till May 2014 the ulcer never went away�always was a pain with spicy foods/acidic juices etc but i never paid it much thought due to the biopsy being good back in 2010. Well my gf(who is/has been the light to all this going on) was finally like look idiot(thats me) go get another biopsy, so i did, in May/2014 and sure enough it came back cancerous. So we began researching places to go to and got into the University of Colorado Anschutz Medical Campus�.met with the team for Head and Neck cancers, did the scans and thought of a plan�.first did the left side neck dissection and they also removed the tumor from the BOT, surgery was supposed to take like 4 hours ended up taking about 7.5 but they said they got rid of everything from the tumor site�along with 30 something nodes in which 4 were cancerous�. that surgery was on my birthday�wooo happy birthday self! haha after looking at everything they decided to do accelerated radiation and no chemo�.radiation was hard but i had more problems with the PEG tube haha�man that was rough(nerve problems, tube setting in wrong place)�.so finished radiation with flying colors and with reading everything on here it helped so much with such great detail it was amazing i found this place. Thank you all for that part�really! amazing work!

so finished radiation late september and was determined to get rid of the stinking tube since mine was so troublesome. After making myself eat everything through the mouth after treatment the drs let me get off the tube(went about 4 weeks not using it once and gained some weight) was eating almost everything with decent taste back and could chew and swallow most anything, lots of water or gravy helped the dryer stuff�... THEN�ugh�.woke up one day and the spot were the tumor was prior kind of burned a little bit. Again paid no attention since we go through hell after all this i thought it was just another downswing�..next day it was worse�.and worse and then the whole tongue started to burn with drinking the ensure/ iso drinks�..i couldn't eat/chew/drink shakes cause of the burning. Even with the magic mouthwash it wouldn't numb it enough�.then the jaw and ear pain started. So i went in and talked to the Docs and they saw a ulcer looking thing so they gave me some pills and steroids to try and heal it�.2 weeks later still no healing and really beginning to get hard to put down even 900 calories a day some days only 600 calories�.it was bad! They wanted to do another biopsy but i was like i can't eat so we got another tube put it just this past christmas�merry christmas self!(at least Santa delivered on this tube, didn't hurt really at all and now its great haha�.man the other one was a MESS) they also did a biopsy on the base of the tongue in the same spot as before and it came back cancerous�..So after not even 5 weeks it had come back in the same spot as the previous tumor, after removing the first one with a positive outlook and going through the radiation talk about a slap in the face. Since putting in the tube I've gained about 3 pounds but still WAY below my normal weight, also can't sleep at all even with assistance of pills(from the DR), have had bad neck and jaw pain along with headaches and my tongue is just so swollen it is pushing against my front bottom teeth and making indents in the tongue�..just got on the fentyal patch(SP?) that along with oxy has been managing the pain but i just want to sleep, can't sleep for more than about a hour at a time so that also not helping with the healing process of anything���
So now we have and I'm not sure the correct term for the surgery but they want to take the whole left side of the tongue and use a graft to do the flap and they are hoping this works. Got me pretty shook up since i was doing great and all and then bamo now this surgery were half the tongue is going to be removed(they said maybe more depends on when they get in there and how much permission i give them to remove, i said 67.87 percent and no more but sometimes my humor isn't laughed at haha) they are also going to take some nodes from the right side which hasn't had any problems so far�.but one node was bright on the scan the other day so they want to take it just to take it. Could just be inflammation from everything but they would rather get it now while they are in there.
Im mostly worried about the Trach tube afterwards since go figure i have a personal neck issue where i don't like anything touching my neck�.so breathing out of it I'm thinking is going to be really the worst part for me�.they seemed to be optimistic about saving the back portion of the tongue to help in eating but he also said it a possibility that i will always be on a tube and might even have to keep the trach tube in for who knows how long�those two things got me the most spooked�..

surgery is set for 7 days from now�..we are meeting with the chemo dr to just touch base with him and pick his brain to see where he stands on all of this�..

well that was longer than i thought but again i guess every cancer patient holds a lot in and then rambles because it feels good to get it out Thanks for listening !

Wow, you have been through a lot in the past year! I love your sense of humor and attitude. It sounds like you have a great girlfriend to help you through this as well. I will be thinking about you and saying a prayer that your surgery goes well.

A tough run Sarge. But you breed them tough in Colorado, our friend Hellion is from there. Hope the surgery goes smoothly.

Hi Sarge, well it sucks that one so young has this story to tell.
First off I want to say that I am really suprised that with 3 positive nodes you were not offered chemo.
My advice is to get yourself another opinion at a Comprehensive cancer Center ASAP. There has been much research that shows where you are treated matters. You have a better chance of survival if you are treated at a CCC.
You are very young and you should ensure that you have the best treatment with the best outcome.
You should be seen by a whole Tumour Board and your case and treatment decided apon by them. This will involve surgeons, radiation and chemo Oncologists , dentists etc all together.
If you are seeing a surgeon. Then a radiation guy and then maybe, a chemo doc you are not at a CCC.
That's my best advice for you. Get a second opinion now before you let that surgeon at you again.
Thinking of you, Tammy.

Welcome to OCF! Sorry you have had a rough time of it but you will get the best first hand opinions from those going through this sort of disease.

Welcome to OCF! Im very sorry to read about everything you have been thru. You are in the right place to get info and support. Stick with us and we will help you thru all the upcoming hurdles.

To help your body recover from everything you have been thru, you need to boost your intake. This will also help you to heal quicker from your upcoming surgery. Every single day you should be taking in at least 2500 calories and 48-64 oz of water. These numbers are the bare minimums. After everything you went thru you should try adding some high protein whey powder to your liquid formula. This helps with healing. If you can push to take in 3000 or 3500 calories thats not too much for your situation. If you can talk with a nutritionist they can help with getting you on a prescription calorie dense formula to make getting enough calories easier. Or you can order Boost Very High Calorie from the Amazon link on the right side of the page. Your intake is so very important especially with surgery coming up. You want to be as strong as possible going into it to make it easier to get thru.

If you have friends and relatives who want to help, ask them to take shifts staying with you while you are in the hospital. Every patient who undergoes major surgery should have someone there with them even if they are only sitting around watching you sleep. After the type of surgery you are having, the hospital staff may not understand you. With someone there they can be your voice and advocate for you.

Wishing you all the best with everything.

Haha, my first post on my introduction thread was also very long. Even though we may have plenty of people to communicate with in our personal lives, there's nothing like talking to those who actually understand what we've been through or are about to go through.

Strange how some cancers take so long to develop and others are quicker to move. In my case, the ulcer opened up and seemed to quickly eat away at the side of my tongue.

So they removed a significant portion of my tongue and had to replace it with a chunk from my wrist about 7cm x 6cm (2.75" x 2.4"), then fill that hole with skin they scraped from my thigh. They saved the back of my tongue and part of one side. You might end up with something similar. I also received the trache, which I absolutely hated. Plus they had placed a feeding tube down my nose, which stayed in place until the trache was removed. The trache was nasty, horrible, truly scary when it plugs up, extremely inconvenient, but hey, it kept me alive and I got through it. You'll get through it too.

Luckily I didn't need chemo. They removed a schwack of nodes from my neck but none of them were cancerous. I did receive radiation treatments, however. It wasn't so bad in my case, although I'm seeing some issues with my teeth now, many months after the treatments ended.

[quote=Vanpaddler]Haha, my first post on my introduction thread was also very long. Even though we may have plenty of people to communicate with in our personal lives, there's nothing like talking to those who actually understand what we've been through or are about to go through.

Strange how some cancers take so long to develop and others are quicker to move. In my case, the ulcer opened up and seemed to quickly eat away at the side of my tongue.

So they removed a significant portion of my tongue and had to replace it with a chunk from my wrist about 7cm x 6cm (2.75" x 2.4"), then fill that hole with skin they scraped from my thigh. They saved the back of my tongue and part of one side. You might end up with something similar. I also received the trache, which I absolutely hated. Plus they had placed a feeding tube down my nose, which stayed in place until the trache was removed. The trache was nasty, horrible, truly scary when it plugs up, extremely inconvenient, but hey, it kept me alive and I got through it. You'll get through it too.

Luckily I didn't need chemo. They removed a schwack of nodes from my neck but none of them were cancerous. I did receive radiation treatments, however. It wasn't so bad in my case, although I'm seeing some issues with my teeth now, many months after the treatments ended. [/quote]


the description you gave seems to be the same sounding situation ill be undergoing�again its not like I'm a pro so we shall see haha�.

but yea the trache�.ugh something not high on my list of looking forward items next week�..i do already have the feeding tube placed in so that won't be needed through the nose which is a positive�.


thanks for everyones support also�means a lot

Wow... I am very surprised with 4 nodes involved that they did not give you chemo as well as rads!!! Let me first say that. I gather based on your description of the surgery that they only removed as small amount. Ideally - they should have removed more. But this is all unimportant now. The surgery you had was what I had. I lost 1/3-1/2 of my tongue - they grafted from my wrist. Believe it or not recovering from surgery was easier than recovering from rads. That said it will take longer to heal now that you've been radiated. Get as MUCH PROTEIN as possible to help you heal. I don't mean steaks or the like. Protein shakes, will help. Ask them if they did full radiation to your mouth. I am wondering if they only did your neck and didn't concentrate so much on the mouth assuming they had gotten it all. In medical lingo, a recurrence this soon after surgery isn't really a recurrence, truth be told it they didn't get it all in the first place (that's a quote from an oncologist)
Best of luck. The trache sucks so bad (not gonna lie) so I hear you. And suctioning BITES in a big way. But it should only be for a short while so hopefully by day 3 or 4 post op, it will be gone.
Hugs.

[quote=Cheryld]Wow... I am very surprised with 4 nodes involved that they did not give you chemo as well as rads!!! Let me first say that. I gather based on your description of the surgery that they only removed as small amount. Ideally - they should have removed more. But this is all unimportant now. The surgery you had was what I had. I lost 1/3-1/2 of my tongue - they grafted from my wrist. Believe it or not recovering from surgery was easier than recovering from rads. That said it will take longer to heal now that you've been radiated. Get as MUCH PROTEIN as possible to help you heal. I don't mean steaks or the like. Protein shakes, will help. Ask them if they did full radiation to your mouth. I am wondering if they only did your neck and didn't concentrate so much on the mouth assuming they had gotten it all. In medical lingo, a recurrence this soon after surgery isn't really a recurrence, truth be told it they didn't get it all in the first place (that's a quote from an oncologist)
Best of luck. The trache sucks so bad (not gonna lie) so I hear you. And suctioning BITES in a big way. But it should only be for a short while so hopefully by day 3 or 4 post op, it will be gone.
Hugs. [/quote]

yea the first surgery we were told that they took enough of the tongue that they had all negative margins�...when we met with the chemo part of the team after the first neck dissection he pushed for 100 percent radiation for sure�and he said he would sit there for days to convince me to get it if i didn't and that was the chemo guy talking positively about radiation �.he spoke of chemo and described it a certain way where it wasn't 100 percent supported to benefit the results based on how the cancer looked in the lymph nodes, etc etc�..so we went with accelerated radiation five times a week but twice on wednesdays to the whole mouth and neck but with more emphasis on the left side...the tumor is in almost the same spot but it is bigger than the last one so with this new surgery hopefully it will be allll gone, fingers and toes and families fingers and toes are crossed as well haha�and possible chemo after depending on certain circumstances�..

had a set back the other day which wasn't good�since the new tumor arrived back in november �..the neck had gotten a lot of referred pain and stiffness also the tongue started getting swollen��well on friday night neck started welling up a lot and so did the tongue making the airways narrow and hard to breathe laying down�went to the ER and had a little bacterial infection in the mouth�.they transferred me to the hospital where the surgery is going to be and am now on some steroids and antibiotics�.swelling has gone down and back to the really stiff neck and not eating or drinking like its been for the last month(eating by only) but the pain is manageable�so I'm already pretty much moved into the hospital for after the surgery�like isn't it nice of my landlords to let us move in a few days before move in date! lucky lucky


i wish i could practice the trachea tube�..ugh its almost amusing to me that THAT is whats bothering me the most out of this upcoming procedure�.anyways hope everyone else is having a great day!