Hi I am a new member as well. I am 21 years old. I was diagnosed with squamous cell carcinoma of the tongue on the right side of my tongue. I was diagnosed in April of last year. I had first partial glossectomy to remove the tumor, then I started seven weeks of radiation and was enrolled in Cetuximab clinical trials. Unfortunately, it came back, so I stopped Cetuximab and started regular chemo, Taxol I think. Lost some of my hair, was not able to eat, mouth was dry, taste buds completely messed up. Lost a whole bunch of weight. I was obese, over 300 lbs and went down to 250. I finished radiation and chemo in July. I went in and got nodes implanted in my neck at Mercy General Hospital in Sacramento in August. Went back to work and was able to eat hamburgers and burritos cancer came back so I had a hemiglossectomy and removal of the lymph nodes of the right side of my neck in December of last year. Spent holidays in the hospital. Had trach and PEG tube put in. I left hospital in January, had trach taken out in March. Just had a biopsy of my mouth and another CT scan. My left side of my neck is inflamed from the radiation. I believe that it is coming back unfortunately. I have a PET scan scheduled for tomorrow I just started work last week. I have a speech impediment, can drink smoothies and milkshakes, and on good days experiment with real food. I'm taking liquid Vicodin, ibuprofen pills for the jaw arthritis trazodone and Celexa for depression. Uh yeah,I feel alone and frustrated with my diagnosis. I am not sure what to do anymore. I feel like no one understands what I am going through in my family. Can anyone please just talk to me and give me some advice on how I should go about all of this bull-- that is occurring right now

Welcome to OCF Israel. You are no longer alone! You have just joined the largest online oral cancer forum. We will help support you and give you info and guidance.

I hope you are not facing another recurrence! Best to stay busy so that you keep your mind occupied and not dwell on the "what if's". I know how scary it can be thinking you are sick again. Especially after everything you have already gone thru. We have all had our share of scares so understand what you are experiencing.

A signature will help us to get to know you easier. Its under the 'my stuff' tab. Click on profile, scroll to the bottom and type in the box. Dont worry about being technical, write what you feel is important.

Best of luck with tomorrows PET scan! Please come back and let us know your results. Hope we can cheer for your good news!!!

Hey - you've been through the ringer it sounds a lot like the Drs have had a tough time getting out in front of the disease - have you had a neck dissection on both sides? Are you going to a cancer center? ( sorry not familiar with the amercan hospitals) do you know where they radiated you the first time? Why did they do a lymph node implant? These are things you should know in order to push for what should be done - please don't worry until you get the results - you've found a great place for support ! Hugs and blessings to you!

Well, Israel, since we're practically neighbors I want to welcome you to the best forum with the best people anywhere. I have to travel to Sac frequently to the VA hospital at Mathers AFB. In fact, I go down for a follow up scan on june 29th. Hopefully spring will have arrived by then. :-)

Holy cow Israel - you have not had a good year have you? You are so young and you've been through so much. I bet it seems like once you think you're over a hurdle there's another one right in front of you. In some ways that's true - we're always getting ready for the next obstacle with this disease and being able to physically, mentally and emotionally manage it all is really hard.
I too feel like my friends and family don't understand sometimes - they just want me to be better and forget all the bad stuff that happened and pretend that there's no way it'll come back. It's kind of a form of denial if you think about - something they maybe have to do to protect themselves - kind of makes it hard on us though! I found that this site really helps me to chat with people who "get" me - I go to a head & neck cancer support group once a month at the hospital which helps too. You're not alone - but I'm not sure that anyone can really understand what you've been through like someone who's been through it. So welcome to this site - I'm glad you found us and hope that you don't feel as alone as you did before you found us!

P.S. - you have every reason to feel frustrated - this SUCKS! Do you have the results from your PET yet? Finger's crossed for clear results!

Israel - I'm so glad you found this site. It's the best place to be for the very latest and best information on oral cancer, and especially for the compassionate people who have been where you are and really do care what happens to you. THe waiting is so very hard, but while you are waiting on test results, it is better if you can keep busy so that your mind doesn't go to the negative side of things and you can try to think of all the things that can go Right instead! Let us know what's happening with you. We'll be thinking of you and hoping for the very best for you!

It's time to toughen up and fight harder. Think on the positive side and it sure will help. Remember it AIN"T until the biopsy says it is. This is the best place to come and air it out. We all understand and we are on your side. I had a reocurrence with in 2 months and they got some more tongue on the opposite side. I'm here as well as the rest and still fighting. Welcome to our family.

Hi Israel, I'm just a caregiver...and not even a very experienced one. So, I can't give much practical advice about OC. But I can tell you that you have found the most wonderful, giving, supportive group of people you could hope to find either in person or via the internet. You'll get support and information and even tough-love when you need it (although, it's mostly heavy on the 'love' and light on the 'tough'!) If you are looking for people who understand...this is the place.

Please try not to worry until you are given something to worry about. Jim is right, the biopsy says that it is or isn't cancer. Scans tell the doctors where to look but they can't tell a doctor exactly what it is.

Please try to distract yourself. Try to keep occupied with things you enjoy doing. Something that may help you feel better is looking for ways your experiences can help others here on the OCF forum. Whenever I feel down, I like to do some volunteer work or do a little something for someone else. It is kind of selfish of me, but it really does help.

Wishing you peace

Said Sandy....Hi Israel, I'm just a caregiver...

GIVE ME A BREAK!!

Were it not for my caregiver I wouldn't want to think how my treatment and me would have turned out.

JM2C's

Just a caretaker? Well, I'm on that side now with Linda having breast cancer and being "just a caretaker" is godawful hard.

Well, David - you're right, being a caretaker can be godawful hard, but since you've been on both sides of the experience, that makes you that much better as a caretaker. So kudos to you for all you do!

LOL David, I likes my caregiver too. I had this old man and still do but he makes me do too much. A caretaker is the ideal way to fight this and I would bet Sandy is the perfect person for this job . I admire you sandy and the way you do your job.

Hey Israel, sorry to hear about your story.

I'm also 21 years old. I was officially diagnosed just after my 21st birthday last year.

We're a bit of a rare breed at our age. But try to see that as a positive. Our youth can certainly have it's advantages fighting this disease. We must all be ready for the battle of our lives though. Being in a good place mentally helped me. I tried to embrace the battle and focus on getting through each day. Some days are much tougher than others. But having the determination to get through those tough days, gets you through to the better days. And you have to believe they will come.

Coming here for support is a great start. I wasn't aware of this site until after I finished treatment. I wish I'd discovered it earlier..

If you ever want to chat, I'm on the facebook list in the 'friends' section of this forum. You can msg me on there or on here. You're not alone in this fight.

All the best mate.

dave

Uh ohhhhh! I owe a big apology to my wonderful friends here who are, or have been, caregivers! You know I love you!!! Being a caregiver/caretaker certainly is a horrendously difficult and demanding job. I am so sorry for making a statement that marginalizes what you do or have done. I'm so thankful for your guidance and camaraderie.

So, Israel, if you have a caregiver, the OCF Forum is a great place for him or her, as well. It really is a family.

@ Anne-Marie: You're an amazing caregiver and you give so much support to other caregivers...we're very blessed. (And thanks for not raking me over the coals!)

@ Jim: Thank you I'm just a pitbull about some stuff and a mama bear about others. If J and I end up going through it, then I really hope I rise to the challenge.

@ David R.: Bless you for knowing both parts far too well and for still having a sense of humor!

@ David CPA: Thank you for acknowledging how important caregivers are to patients. You are so kind to make sure it doesn't go unnoticed.

Love to all!

...and especially for gentleman Jim...a big hug and kiss!