Hi & welcome! Sorry you guy's need to be here, but as you've discovered it's not a bad place to be & hopefully will continue to be helpful. I started out at 43, 225lb & 6'1", bottomed out at 176. He will lose a lot of weight. He will really have to work hard & stay focussed on keeping nutrition level up, up, up! I was hard headed & got pretty malnourished. That was just the low point & as Rob said in hindsight it has gone pretty fast. I am back up to around 195 or so & actually broke 200 a couple of weeks ago at the end of piggin' out in Hawaii for 2 weeks on vacation!!! It was a rough year, but doable & I'm in the best physical shape I've been in in 20 years!! I had Amofostine only 2 or 3 times, but it made me too sick & they stopped it. I seem to have ok saliva compared to last summer, but still not back to normal. It's more of an inconvenience than anything, you just adapt. The bottom line is you guy's have some work ahead, but just get through the treatment, keep your attitude right & live your live's to the fullest. I have 3 daughters, 14,10,& 9 & a beautiful wife - a lot to live for! Sounds like he does too! Stay in touch! Erik

Virginia, I sent you an email. Take care! Maureen

I too am like Virinia and my husband was diagnosed last week with Ca at base of his tongue. We also went undiagnosed for months and I feel so helpless now and blame myself for not seeing it sooner. The earlier biopsies were negative but when we got to the right ENT he knew what was wrong in a few minutes. My husband can't take anything but liguids and I am trying to get as much "good food " as I can in him but he has no desire to eat.We start chemo and radiation next week - he is not a candidate for surgery as he also has a weak heart. I cry away from him - I am his support and try to maintain an upbeat mood around him. I probably just need a good cry and then get on with it. We will not let cancer ruin our life - we have things to do and places to see!

Hello dryfly1,

Welcome to the club nobody wants to join!!! Glad you found us though. All of have had a good cry over this whole process. We are human beings with emotions. The trick is to stay on the upbeat and when feeling down post your concerns. It helps to get some feedback from those of us that have traveled the path ahead of you. Educating yourself about oral cancer will empower you to ask the right questions at the appointments. Write them down ahead of time, you never remember all at the doctors.

What type of Chemo & radiation is he going to have? What did they stage his cancer at?
Is he being treated at major comprensive cancer center? If not a second opinion at one would be in order. You want someone who sees alot of what he has. It is a most unforgiving diaease. Throw everything at it the first time.
Many of us were where he is now and survived. He can to. Remember to keep a positive attitude and take one day at a time. Measure his progress in weeks not days. There is light at the end of the tunnel and I hope you both get there soon.

Best Wishes, Danny Boy

Like Virginia & dryfly1, my brother was not diagnosed right away. Over a period of about 18 months, his doctor kept prescribing antibiotics for his swollen lymph node. Finally, the doctor did a biopsy and when it came back positive, he sent my brother to a comprehensive cancer center. He was diagnosed with tongue cancer, stage IV. That was over 3 years ago. My brother is back to work and has been cancer free since he ended treatment. I mention this because the next several months will be tough for you all, but people do survive, even stage IV people.

I am so glad I found this forum. I felt like there was little hope but was determined to maintain a positive attitude. We are going to a cancer treatment center about 60 miles one way as the local one does not have a good reputation as of yet. I feel confident of the doctors and have seen such kindness from all of our contacts so far.

Well we have started my husbands treatments and feel like we are controlling the cancer and it is not going to control us. He will have Carboplatin and Taxol weekly and daily radiation for 7-8 weeks. My husband has had a weight problem for years and was always told to lose weight so now he is being told " don't lose anymore weight this week or you may have to have a feeding tube" so this is a big adjustment for him. He is having a portacath inserted tomorrow as his veins are hard to find. I know we have a challenge ahead of us and pray we will stay strong enough to get through this.


'

My husband also was on Carboplatin and Taxol along with radiation. Don't be too put off by the idea of a feeding tube - it can be of great help. My husband also had the portacath and that also ended up being of great assistance.

Amazing what strength you can find when you need to. I certainly found that true.

Sending good thoughts your way. Keep us posted as treatment continues - there is some really good support available to you both here.

Best,
Anita

Virginia & dryfly, my dad was dx 5/05 with stage IV scc base of tounge, eppiglotis, back of throat and met to lymphs on both sides. He has not started treatment yet, probably next week. He will be having chemo (not sure which one yet) and rad every day for 6 weeks, sometimes 2x a day. I know what you mean and I feel for you. I never realized how much I really loved my dad until this came up. He was misdiagnosed as well by an ENT in the ER at our local hospital. They said he had acid reflux. He had been dealing with a very sore throat for 2 years but never had any medical coverage. Memorial Sloan Kettering in NYC had a free cancer screening a few months ago and he went and they told him he needed to be followed up, thats when the dx came. Thankfully, he got medical assistance from the hospital to be treated. I am doing whatever I can to help my dad but also trying to be support for my mom. My dad has always taken care of everyone so this is drastic for us. I cry when im away from him too. I have only been here for a few days and already I have found a wealth of information and support from these wonderful people. Keep your head up and stay strong. Time passes quickly.
Prayer and hugs
Sara

I am about 30 minutes new to this site. Today my dentist informed me he wanted to see me back in 2 weeks. He mentioned a possible biopsy if the gum tissue doesn't look any better. I guess I'm in the "stunded" stage, even though I've not been officially diagnosed. I will let you all know. I want to think positive but I somehow feel in my gut that this is real. From what I've read in some of these letters here sound like I'm in for one helluva ride but I won't be alone. Thank you for allowing me to introduce myself and for your good company. ALways, Roz