I just wanted to take a minute to introduce myself and thank you all for such a wonderful forum. It seems to be an amazing group of very supportive and highly informed people..a god send at this stage of my experience.

I'm 39 and was dx with Stage IV SCC at the base of my tounge (about 3x3x2 cm) that has irregular boarders and areas of probable invasion into my neurovascular regions but has not efected my jaw or larynx at all. I also have 3 nodes involved in my neck on either side. I'm being treated by an amazing group of people at Mass General Hospital's Yawkey Center for Head and Neck Cancer.

I went to my PCP for routine visit in early Feb. I had some recurrent sinus infections and noticed the swelling of my lymph nodes that hadn't gone down. She wisked me off to a ENT oncologist, who did a small needle aspirition biopsy and found SCC cells...an endoscope the next day found the mass on my toungue. A week later I had a port put in my chest and a full biopsy of the mass done and a few days latter started chemo. That was last Thursday-Sunday. I ditched the 5FU pack on monday morning, and here I sit amazed at how much my life has changed in 3 short weeks time.

I thank the chemo gods for having some mercy on me. I have responded very well and had little adverse reaction. I'm tired and dizzy and feel all sorts of weird things going on in me, have a good case of thrush, and am farting up a storm, but I'm also eating some oatmeal as I type and enjoying it for the moment. I haven't had any neausea or vomiting, and am not taking any meds for it.

the plan is 2 or 3 rounds of chemo (docetaxel/cisplatin/5fu) then follow with 5-6 weeks of radiation with some concurrent chemo. I'm just glad to be past week one and over one hurdle....I look at it all sorta like this bowl of oatmeal. I don't really want it, but I know I need it, and if I keep taking small bites while doing other stuff I like before I know it it will be all gone and I'll feel better in the end. a bowl of oatmeal...a bowl of cancer? its all the same....just keep going in small steps.

anyhow...thats my story. I can't say that I am thrilled to join your group, but I am thrilled its here to join.

BTW: apart from eating oatmeal, I am also a car nut, I am involved in motorsports at both the professional and amature level, I am an advid motorcylist (sportbikes) and sailor, love to travel hike and scuba dive, snowboard, cook, and in between I pretend to be a lawyer to pay the bills. Patent law, mostly biotech....

I look forward to getting to know you all through the next few months and beyond...

thanks
dave

Welcome to the club nobody wants to join Dave!!!
You have found the best, most informed group of people on oral cancer on the web.
Was surgery not an option for you? You mention starting treatment was chemo. Alot of us it's cut, burn and chemo. Ask any question you can think of and someone will reply undergoing
similier treatment.
You can also use the search engine at the top of the page to research many of the older postings.
The more educated you are about this diaease the better decisions you can make regarding your treatment.
Please keep us posted on how you are doing and good luck with your recovery.

Danny Boy

Hello Dave ,
Is it not just amazing what can happen to your life in such a short time!
As you probably know, things are going to get tougher for you, do you have family around to give you a hand when needed?
I see you have a good sense of humour ( British spelling!) that`s great, because it`s certain you will need it in the coming future!
In the meantime, drink lots and eat everything you can... sorry about your unfortunate side effect!
Diflucan seems to help with thrush if you are not already on it.
Let us know if there is anything we can help you with.
Take care
Marica

Nice to meet you Dave!

I would say "welcome" but somehow welcome just doesn't seem appropiate here. I think we would all agree this is not a club any of us wanted to join, but are all grateful it is here.

I am new to the club myself. My husband was diagonsed with IV SCC, primary unknown last July. I happened upon this wonderful forum just a few weeks ago and haven't been able to stay away from it since.

Here, you will meet some of the most knowledgeable and inspirational people you could ever wish for. Even though every case is different, we all have a common denomitor and draw from one another's experience. I don't think I've read a post or question yet that someone wasn't able to give really valuable answers or insight to. People seem to express themselves openly and freely, and even though there may be differences in opinion, there is always respect and gratitude.

Glad to hear your taking chemo rather well. Do you have family or friends close as good support team to help during the rough times? Keep us posted and let us know how your doing.

Take care, Vickie

Danny,

thanks. With irregular boarders and probable neurovascular invasion surgery was not an option. I spoke to multiple ENT surgeons (both locally and abroad) and all said the same thing. It simply would be too destructive to the entire region. they are all very optomistic that chemo and then chemoradiation will take care of it w/o a need for any surgery. Only time will tell...

I do know my lymph nodes are already 1/2 the size of what they were before the 1st round of chemo... whoo hoo!

i'm just hoping that the mouth sores stay away as well. I have an important meeting on friday and need to speak a lot....one day at a time though.

-dw

oh and yes...I am surrounded by an amazing group of family and friends who all love me very much and have already provided so much support that I'm speachless sometimes.

I am taking diflucan for the thrush and also adding some Grapefruit Seed Extract to my drinking water which seems to help alot...even if it doesn't taste very good.

davew

Hi Dave, this disease can certainly turn your life upside down quickly, can't it? This is not a club anyone wants to join, but welcome nonetheless. It sounds like so far you're doing well with it all. having lots of supportive family and friends is certainly a huge help. As Marica said, drink lots of fluids and eat as much as you can for as long as you can. I hope the rest of your treatment goes equally smoothly for you.

Nelie

Welcome Dave, pull up a chair and stay awhile and it will help you reach your goal, which is to be well again.
My brother and sister in law live in South Hamilton, she's a lawyer also, although not working at this time due to motherhood. My brother is huge in the youth hockey stuff.

Good luck with the treatments, I hope they continue to be gentle on you. If not, hang on tight and it will soon be over. There are silver linings to this ordeal but it takes awhile for them to show themselves.
Minnie

Dave... Please be sure to talk to your doctors about any additional supplements that you are taking. You would be surprised at how they can impact treatments and more. For instance it is well established that with some drugs, grapefruit increases the effect of the drug... This is not always a good thing. When in doubt, your doctors will thumbs up or down any adjunctive herbs, vitamins, etc. that you wish to take. Some are definitely worthwhile, some you have to watch out for.

thanks...I did discuss this with my dr already. Grapefruit Seed Extract (GSE) doesn't seem to illicit the same increase in absorption in the intestines that grapfruit itself does...though admittedly clinical testing is pretty limited. What testing has been done has shown zero toxicity and no interactions....

I guess I should add that I do have a degree in microbiology and fairly extensive medical background that includes 8 years in the US Navy as a Hospital Corpsman and Marine Field Medic, and the legal work I do involves extensive work with biotech and medical device companies. My girlfriend is also a microbiologist who works in virology developing vaccines. We both have studied oncology prior to this experience, and between us we certainly have kept the Dr's on their toes....one of them even asked me if I was an MD after I asked him some questions regarding the mechanisms of action for my chemo agents...he laughed when I said, "no I'm a lawyer..."

thanks all...
dw