Greetings.

My name it Tim and I am 6 months post tx for Base of Tongue SCC HPV16+ with one lymph node involved. I was stage III. I had no surgery or platinum based chemo, only Erbitux and Radiation for my treatments. (NOTE: I was one of a few to have a severe, but rare reaction to Erbitux in the form of a "horrible" acne type rash that covered me with large white and sore pimples almost every square centimeter on my body from the top of my head to my lower back. My oncologist said I was one of the worst he had seen with regards to Erbitux). I began tx Nov 2011 and finished tx January 2012.

It was suggested I have a feeding tube placed in my stomach before tx began. I followed their suggestion and I am GLAD I did. I lost a total of 70lbs in treatment, mostly towards the end. My feeding tube was placed in Nov 2011 and removed in May 2012. I have now lost a total of 85lbs (I was a large man going into my treatments). If anyone asks my opinion, the feeding tube in the stomach is an insurance policy and I personally suggest getting one in case needed. Of coure, try very hard to not use it by swallowing all through tx and do your mouth, swallowing and neck exercises faithfully, this will aid in recovery. Nourishment is healing. You must eat no matter how it is done. Hydration is critical too. You would be surprised how fast you can become depleted during radiation. Your body is BURNING through calories at a massive rate from the radiation.

After radiation was the worst for me. I was in pain and slept the entire first month after radiation. I was taking 6 Narco a day and wore two Fentynal Patches (25mcg and a 12mcg). I consider myself blessed, many wear highter dosage patches than I did.

Do not feel you are behind the class in your recovery if you take months to feel better. I did not feel much better the 2nd or even 3rd month after tx. The mucous was horrible. I felt I could not breath due to the mucous, choked on it all the time and of course I just could not eat via mouth. (I share this only to share what could be, not to be negative. Knowledge is power and the bottom line is it will get better though a hundred times you may say to yourself "I can't make it another day". You will and you will be glad you did). Every "body" is different. Some heal faster than others, but almost all heal. Always share your pains, concerns or symptoms with your ENTIRE care team. They will guide you and help you.

My first follow up PET/CT scan was on May 7. I had my scan and received my results the same day (don't I have a wonderful Oncologist). My scan came back with very good results, showing no cancer in my lymph node or base of tongue, only showing a slight uptick in heat on my vocal cords to which the radiologist and oncologist attributed to radiation treatments.

The same day as my scan I set an appt to see my ENT who was able to do a scope / finger exam and also read my scan results from that morning. My ENT also agreed with the radiologist and my Oncologist that all looked well.

June 6th I had two separate appts with my ENT and Oncologist. Both performed a scope exam / finger exam and all looked well they said.

As of this post I have been off all pain medicine for over 1 month and I do feel good. I still get tired, have sore shoulders and some numbness in my face due to radiation. I also get a tingling / numbness feeling down my back and legs when I touch my chin to my neck, common side affect. I do battle with thrush as well. Three times since last radiation. For some odd reason my hips ache quite badly when I go to stand up after sitting, this may be due to the dramatic weight loss I experienced, just my opinion.

You will find your mind can go into overdrive with every new pain, ache or symptom. Always share them with your healthcare provider team, but remember to "stay calm and carry on" ...life is much sweeter since my cancer dx and I try very hard to enjoy my time, family and each day.

I am back full time employed now (my employer held my job as I took a leave of abscence). I came back to work full time around 2 months after my last tx, but I was not fully able to do like I used too until just the last 4-6 weeks. Again, I still get fatigued and tired often, I just rest when I need to and do what I can to eat right, take vitamins and exercise (the exercise I do need to get better at).

I am happy to share my experience, talk to, pm or do anything I can to help anyone who has to take the same path as I.

My family, faith (prayer) and five children gave me the incentive to fight.

Best,

Tim

Welcome to OCF, Tim! Glad to have another survivor aboard. Its best to write on the forum so it lives on to help hundreds of others who read this site. PMs are great for personal info such as phone numbers. A full recovery takes a long time but it will happen.


PS... I think I know you from one of the facebook chats that Ive been added to. I rarely have time to read or post but I do check in once in a while. I tend to stick here on the forum where I know medical info is correct and cant hurt anyone. Plus doing my admin duties requires a considerable amount of time every day.

Hi Christine.

Thank you for your reply and welcome.

I am still figuring out how to navigate and work this forum (I am a very impatient type and just wish I knew how to now)

Wow...3x survivor. I hope that does not offend, but my worry is recurrence. I'm doing all I can to have follow up care and be watchful.

I am on fb on the H&N Warriors, maybe that is where you have seen me. I also post very frequently on ACN message board.

Best,

Tim

Thats where I thought I saw your story, on the facebook chat. My online time is primarily spent right here. Im not part of the ACN site. I have enough to handle on the OCF forum.

Once you post a couple times you will get the hang of the forum. Try adding a signature when you have time. It helps us to get to know you quicker. Click on the "My Stuff" tab, then on "edit profile". Scroll to the bottom and type your info in the white box and "submit".

Ive been thru quite alot in the past 5 years. Every time I got better the cancer came back. Funny how I was so paranoid about getting a recurrence I would never even open the recurrence tab. It didnt prevent me from getting sick again. It takes work to keep a positive outlook sometimes. With having 5 children Im sure they keep you very busy. My children are grown up now and I miss having little ones around. When your mind wanders to the "what if it comes back", try to limit how long you will ponder that thought and then turn it off and go do something productive. Cancer can be a thief and steal your time away from you. It can be debilitating making you worry so you cant do anything else. Make the very most out of every single day and you will have no regrets when you finally get to go to bed at night.

Glad you have joined OCF. It really is a great site full of knowledgeable people who help support each other. Its also the largest online support group of oral cancer patients and caregivers. If you need help navigating, please let me know. A couple tips, click on the topics on the left. That will open up all the posts with the most recent up top. This way you can keep up with all the latest posts. I also will click on the Active Topics tab on the top to see all the newest posts. Only problem with that would be you may miss some newer posts if nobody has written on that thread for the past couple days. Thats why I go down the left side and open the tabs so I can see all the threads.


If you need help with abbreviations check out the FAQ tab. If you find you made an error in your post, it can be edited for 3 hours after its published. If you want to add something to your post, its ok to edit it. If you want to ask a couple more questions then its best to begin a new post instead of adding to whats already published. Just ask if you need any other help and one of us will guide you.

Hi - welcome - so glad you're doing well!!

What you described is VERY normal icluding the reaction to Erbitux which is known to attack the skin. Please keep in mind that your recovery can take up to 2 years post Tx to resolve your Tx so do keep up that positive attitude. I consumed appx 3000 cals a day post Tx and still didn't gain a pound back my entire first year of recovery.

Hi Tim! Welcome to OCF! Glad you are doing well and hope to hear that you have many more clear scans!

Tim, adding my welcome and so glad to hear how well you're doing! Keep up the good work and we're glad to have you.

TIM!!! Glad to see you on OCF my friend! Welcome aboard...or a boards? (sorry private joke that nobody here will get, just know I make myself laugh hysterically) Good to see another Idahoan and hotelier on these forums, I think it's exactly what they need!!

Hi all.

Thank you for the warm welcome.

I will get this signature thingy figured out here soon ?? I think.



Best,

Tim