Hi All-First noticed then-small lump in neck late May; Recent biopsy confirmed SCC; laryngoscopy indicates primary as BOT along with 4-5cm left lymph node. HPV test not done yet- fired first doc, went to well known CC, that test is in process. Starting Rad/Chemo within next 2 wks. Just back from stocking up on items that I've seen suggested on here- some great ideas, so thanks in adv. There is comfort in knowing I am not the only one approaching/going through/dealing with this. Just the fact that I am TRYING to bulk up is surreal to me, but seems to be logical first step. Lyn, in NJ

Hi Lyn! Welcome to OCF!

Glad you have found this site to help get you thru your upcoming treatments. Feel free to ask questions and research as you have been doing. There is also tons of important info on the main OCF pages. Nutrition will be the key to getting thru this easier. Eat everything you can now as your sense of taste and swallow will be 'off' temporarily for a while.

Best wishes!!!!

PS... If you are anywhere near Andover NJ on Sat, the 22nd there is the 5th Annual OCF walk. Its to honor David Nastro who sadly lost his battle with oral cancer. I always attend (except the year I was in the hospital) along with several other survivors and caregivers (last count was around 12 OCF members). Survivors are free but you would need to register online ASAP in order to get a tshirt.

Hi welcome, a bunch of others will be along to say hi! You'll get through this - its no picnic but you will get though it... Good luck!

Lyn,

Your are doing everything right especially adding this site to your arsenal. Your hubby has a 70% chance that his cells will test positive for HPV which is a better outcome compared to HPV negative. Please add a Signature Line when you get a chance so you won't have to repeat yourself whenever you post. Saves responders time as well. We will be at your side throughout this Tx and recovery and don't hesitate to ask ANY question ANY time. Things in this TX can go from OK to ARE YOU KIDDING ME in mere seconds so we are here 24/7 to help anyway we can.

Lyn, sorry your here. Your story is far to common. I have read many posts that are just like your including mine. (See new member about 6 posts down). The good news is that this is well documented and the treatments proven. Please keep us informed of your progress. I find reading the post to be very helpful.

Best of luck.

Welcome to OCF.Hopefully you have people in your life to support you through this because it is a hard battle but winnable with a good attitude and loving family/friends. Best to you.

LOL- I am inept on computers. I thought I had put a "signature" on; success this attempt hopefully.
Thank you all for your responses. BTW, DavidCPA; no hubby, this is all me.
I am very fortunate to have family and friends- and a puppy- who will help me through this. One of the bigger challenges at this point is how helpless everyone feels. I keep telling them not to worry, that the time Will come when I need them desperately! And again, thanks in advance, because I will be relying on you who have already started/are on this journey for info and support. As for what I have to offer? Not much at this point, because I am in full denial, which I am perfectly ok with. To me, stocking up on supplies is an excuse to shop, even if it isn't for shoes. (Please excuse the brevity; I am sure that will change over the coming weeks, though I am sincerely hoping not.)
Lyn

Ooops my bad. Luv that Signature Line.

Lyn

Welcome. Be sure to get a blood test for your TSH (thyroid hormone level) now, before the radiation & chemo. You need to know the exact number because while everyone checks after radiation & chemo, it's worthless since the "normal" laboratory range is so huge that it's individually worthless.(0.40 to 4.50)
It's an easy blood test.
Charm

Lyn,

Where are you being treated? Is it a Comprehensive Cancer Center (CCC)?. How far away from home is it.

I had lots of help from my family with a one hour drive each way to my treatments. Even early on, when I was in good shape and could drive myself, I still took the rides from friends and family. The time I had just talking with them was great. When you are dealing with something this emotional and deep, you find a completly different conversation happens with those who are close to you. I found my relationships with those who traveled this road with me became much fuller and more enriching.

Take all the help you can get early on and also later when you will need it (and you will).

Best of luck!

Hi Lyn,
We are almost a year out from finishing tx. Kevin was in full denial too, up until the biopsy results. We went through the holy crap phase then started tx and went all out full battle.
It has been a long time since you felt that lump in your neck. This tends to be very aggressive. Just watch for other lumps. Kevin had one, then within 2 months had many on his right side, right down to his cervical collar. The fear just prior to beginning tx was that it had passed there and met. to his lungs. Thankfully it had not. Maybe you could let them know that if it becomes available starting sooner would be good. Just a thought.
Do you know what chemo you will be having?
Best of luck, It's a hard journey, but you have a very positive attitude and that is half the battle. Our families really did feel helpless, until they saw when it was time to kick in. You, and they, will know. Let them do even the little things for you though. It helps them process. As the caregiver, it was harder on me than it was Kevin. Christine always says that (it is easier being the patient). When you are the patient you just do the tx and stay positive. When you are the family you grasp at life in any way you can trying not to drown in the thought of losing your loved one. Please let them help and love on you. If not for you, then for them!!
Keep in touch. Like David said, we are here 24/7. On some of your long nights, tap in. Don't suppose ANY question is silly. We have asked them all before probably.
Kathy

Good Evening-
Well,the time delays are because I started out with my family doc in June.In August,after many tests and anti-biotics,he finally sent me to an ENT at a local trauma cntr. I got the biopsy results Aug. 24. Besides the length of time that transpired, there were many issues- MANY issues that led to my firing that doc a few weeks ago to go to Fox Chase Cancer Center located in North Philadephia, about an hour away. I am SO relieved to be in thier care, and to feel that I am in the right place, esp after the issues with the first doc/hosp.
On Thurs., I get fitted for my "mask". Thankfully, from this forum, I am a little prepared for it. I also have a notepad with Many questions. I am currently trying to find out about clinical trials available.
Wow. I just re-read what I have written so far, and I actually sound somewhat sane. Interesting, since I am feeling far from it. yay.

_________________________
Stage 3; BOT primary; Left Lymph Node 4-5cm
Starting Chemo/Rad early 10/12
Corporate Trainer- Southern New Jersey

Christine- I won't be available on the 22nd; family is coming in from out of town so we can plot and plan our course of action for the coming months- but I will be checking the "events" link to see what other opportunities are near.

Hi Lyn and welcome to OCF! Really sorry you have to be here. The OCF forum and website is the best one-stop source for all things related to oral cancer. Be thankful you found this website before your treatment started � I didn�t find it to about 6 months after my 1st surgery.

I live north of Philadelphia (near Allentown) and in the 7 years since I was diagnosed with OC I have been to a number of doctors and hospitals in Pennsylvania (including Fox Chase) and Maryland (Johns Hopkins). Fox Chase is a great facility with great doctors. I know a number of OCF members that were treated there and they share the same opinion. Being comfortable and confident with your medical team is very important in your treatment.

I�ve also found meeting and connecting with OC survivors a valuable part of treatment also. The forum offers that as well as the awareness walks. There is another walk not too far from you on 9/29 in Bethlehem, PA (see Lehigh Valley Awareness Walk). This walk is organized by local OC survivors (I�m the co-chair) including many that have reached the 10+ year mark.

Since you have an hour drive to Fox Chase, try to line up drivers to take you to your treatments especially on chemo days and during the latter part of your RT treatment. I also had so many questions at each appointment, I would ask my doctor if I could record the discussion � some will allow it, but others won�t.

And continue to come to the forum to ask questions or just for support. Good luck with the mask fitting. It was a little unnerving for me as I didn't know what to expect. I wish you the best!

Your story is so much like ours. Kevin found his lump in April. We saw the doc in May. Ran the 10 day course of antibiotics, then did a CT which showed the big enlarged lymph node plua a few others that were getting that way. But, Kevin was in denial and convinced the doc to let hime go back to work in Alaska, where he stays for 3 weeks at a time. I was livid because I KNEW it was OC. He had every symptom and had had many of them for months as I read more about them. So, I made an appt with an ENT the day he got back. They couldn't see anything and put us off another week until I convinced them to do an MRI. Things flew into motion at this point, but we were mid-July. He started chemo on July 25th. If the doc (and Kevin) had listened to me we would have started almost 2 months earlier and it would not have involved as many nodes as it did. All in all though, his tx would have been the same. They hit him hard with all the big guns as you can see by my signature. Even the IMRT. He had 60tx. We have a 1 year PET next month. Nerve wracking, but trying to stay fearless and positive!!
So glad you are getting together with family this weekend. You have a great start, and yes, you sound VERY sane!! ;o)
Kathy

Welcome and of course sorry you have to be here BUT yes we are a crazy insane bunch of folks THAT'S why we all get along so well so feel free to lose your mind! We are here to help you get it back to as normal as we can! Feel free to vent anytime, been there done that! But ya gotta watch what ya type that damn Christine is a stickler on what you put down in type! Hello Christine!! XXOO Good Luck Lynney! Love the name I have a cousin with that name!