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#178383 03-16-2014 02:38 PM
Joined: Mar 2014
Posts: 110
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Joined: Mar 2014
Posts: 110
It is with sadness I join this community, not for myself but for what I fear this place and my treatment will mean to my family.

44 years old, generally healthy, diagnosed with SCC via fine needle aspiration about a month ago. I'm doing the due diligence and have been confirmed as T2N2cMx and I have never been so afraid. I smoked for years, but my ENT is pretty sure it's HPV (hopefully he confirms that tomorrow -- he's been out of town since doing my biopsy on 3/3 because I've heard that increases my prognosis a bit).

Currently they say I am inoperable at the base of the tongue and in the neck so we're going for chemo/radiation starting on 3/31. 33 treatments with 3 chemo across 6.6 weeks. I don't really know what else to say, other than I hope my oncologist's prognosis of 60-70% cure is accurate.

I don't know what else to add. I hate that I'm so wrapped up on myself now, which is why I decided to come here. At least I can whine anonymously because I don't think I can take hurting my wife and kids any more than this already has. I hope I'm strong enough to take the treatment and win this fight.

Anyway, I tried to emulate the signature block but I probably got it wrong smile .

So, howdy! Having read through some of these posts, I can only say that I hope I'm as strong as so many of you who so sadly came before me have been.

Cheers

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jun 2013
Posts: 262
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Posts: 262
Hi there, I'm sorry you're eligible for this club, but so glad you found us. Here you can whine, commiserate and get great advice from those who have gone before. Please don't doubt your strength -- you'll find resources you'd never guess within yourself, your family and your support network.

Your signature is great, and your screen name's even better. A guy who dubs himself "The Hellion" is up to the battle ahead. Now I wish I'd named myself "The Fury" or "The Wraith." smile

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Hello Hellion. Yes, this is indeed a scary time for you. It's scary for all us especially when we are first diagnosed.
Most cancers at the base of the tongue are HPV positive and you are correct , that does give you a survival advantage as these cancers are supposed to respond very well to chemo and radiation . So your treatment plan sounds correct and you will find many here who have gone this exact same path.
This treatment is no walk in the park and can be brutal at times. Others who have been there will come along soon with advice for you.
My advice is to stay strong and get your fighting hat on. I'm of the opinion that attitude makes a difference. Tell yourself that you can do this and that you will survive. Don't worry about statistics, they don't apply to you. You will either be a survivor, or not. At 44 you are young and I'm guessing healthy so that gives you better odds too. Your Family will be your greatest support, especially your Wife and children. For now, take it 1 day at a time.
Christine will be along shortly to give you advice on nutrition and eating lots.
Read these forums. They gave me lots of strength and excellent advice.
You will get through this,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jun 2007
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Welcome to OCF! So sorry you have a need to join our group but Im very glad you found us so we can help you. We have been where you are and know how hard it is in the beginning. The shock of being diagnosed with SCC OC can take a while to sink in.

Right now you need to focus on what you have within your control.... your intake. From now until at least one year after you finish your treatments your daily minimums should be 2500 calories and 48+ oz of water. If you can get more in thats even better, especially with the water. Since you havent started treatments yet, you should be eating all your favorite foods and not worry yourself with weight gain. You do not want to go into this with cravings. Your sense of taste and swallowing capabilities probably will be compromised for several weeks, maybe months, so eat now.

Get a complete blood test including thyroid and testosterone levels. Get to the dentist for a good check up including having flouride trays made. This takes a while so best to get moving on it now.

You will have all kinds of appointments. Many people will offer to help. Dont turn down anyone! Now is not the time to be too proud to take help. People really do want to help and they arent sure what they can do. Take down their contact info and tell them you will let them know when the time comes what can be done. The more helpers you have, the better. This will make things so much easier on you and your family. There are a million small things that can turn into a huge help like picking up prescriptions, doing some laundry, taking the kids to the movies or out for the afternoon, even walking the dog or cooking a meal for the family will be helpful.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2011
Posts: 805
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"Above & Beyond" Member (500+ posts)
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Joined: Oct 2011
Posts: 805
Hi,
Speaking from the wife's viewpoint...she is as scared if not more scared than you. I know you want to be here to have support, but be sure not to tune her out in order to not hurt her, because that hurts more. You are in this together and she needs to see your humor, strength and fears as well.
You sound as though you have a great sense of humor and a fighting spirit and I will tell you from watching my Kevin that that is half the battle. you can see from my signature that we were also BOT. We are about 2.5 years out and all is well so far. We live an almost normal life now. Worry comes around scan time, but we have tried to move toward normal for our kids more than anything.
Stay in touch and ask anything. Keep a notebook handy and write down questions as you think of them. Keep something by your bed as well for those late night "I wonders".
Welcome to the family. I would encourage your wife to join the site as well. She can always personal message some of us care givers so she doesn't feel so alone.
You got this. The fear gets better once tx starts because you are actually doing something instead of waiting.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Dec 2003
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Hellion,

Sorry you are here. I'm impressed with the high probability you were given, even though it is just a statistical number based on historical data. I, too, was Stage IV Base of Tongue, T2N2bM0. I was given 25%-28% and surgery was suggested although we saved it in case I had a recurrence. I was diagnosed with 3 people almost the same day and I was the only one of us that made it. That was a bit nerve wracking.

I am a bit confused why they are saying inoperable. Are you being treated at a major cancer center?

Anyway, once you get last the initial shock, things will settle into a routine. Spend some time perusing the entire site so you have some idea what you are facing. Keep an updated To Do list with all the tasks you will have to do and, as ChristineB suggests, don't hesitate delegating to others. It will make it easier for you.

Best wishes on your upcoming treatment. Many have traveled the road ahead of you and will help you through this.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Glad you found us, sorry you are here. I will add to the the great advice you have already received. The treatment can be effective but also brutal for some. It was for me. You will be very busy for the next few week, if not months. Focus on things that can be done now to make the treatment easier. I am thinking of household stuff: cars, yard, garage work, that kind of stuff. As a dad you have lots of stuff you do everyday to keep the house working. You will not feel so good and doing these type of choures will become difficult. Get as much of this work done now. Don't be too proud to ask for help. You will need it. Keep you chin up, you will get thru this.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Jul 2011
Posts: 945
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Hi, Hellion
great screen name which (I hope)indicates your fighting spirit. I attended many doctor's appointments with my husband - carried a notebook and list of questions. It would have driven me nuts not knowing. If your wife is interested in attending with you, please do not discourage her from being part of the process. It is hard to hear the facts, but it is worse to imagine them.

Various studies slice and dice the data in assorted ways. At least one of those I have seen shows a survival advantage to being married! If you have a partner who is able to help you maintain nutrition and hydration - and make it through treatments with a minimum of interrupts - that is very important. I felt helpless and useless at my husband's diagnosis - but learning that I could be of help to him helped me get through the battle.
Best wishes to you and your family.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
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"OCF Canuck"
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Hi Hellion. I too love the name and the great spirit it implies. While your cancer may be HPV positive, I am sure you know how tough smoking is on the oral cavity and the rest of your body. While you didn't specifically say, I assume you have quit.

Have you thought about getting a second opinion re surgery? If I were you I think that is what I would do. All of the previous posters have given great info - pay special attention to Christine's advice re nutrition. I fully believe that, in addition to mt OCF family and our FABULOUS medical system, I am still here today because I am a good eater and was able to physically withstand treatments.

My contributions to you will likely be more about the emotions you will deal with - more about the fear than the mechanics of treatment. There are so many here with much more expertise. First of all, yes the fear is ABSOLUTELY normal. 2ndly - Do Not Blame yourself. 3rdly, worry is like a rocking chair - it gives you something to do but doesn't get you anywhere. Rely on you friends. Take them up on those innocuous " if there is anything we can do" comments. Get them to shovel snow, or run a lawn mower, do some grocery shopping, provide a meal for the freezer (tell them of any sensitivities) ow whatever. People really DO want to help - they just feel helpless. Now is the time to lean on family and friends. I can guarantee that you will be surprised at who steps up. Be careful not to judge your friends at this time. They all handle their fear differently - they love you and some will be frozen in their tracks. Don't be disappointed. We are all different.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: Oct 2013
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Welcome to the family Hellion. Your username made some of us jealous, wishing we had thought of it first. Such is the nature of human vanity as Donna says in the previous post.

Notice that within a day or two of joining you have quite a few responses to your first post. That's how this group is, supportive and not shy about it.

I don't have any technical advice to give you, many others are more experienced than I. But, what I can tell you is, while treatment can be brutal and painful, it isn't always so. From reading the forum I was convinced my treatment would be horrible, painful, every bad adjective I could imagine, and maybe worse. But, it didn't turn out that way. Quite the opposite in fact. Overall, it wasn't bad at all. Yes, I had some mouth and throat pain but that didn't really show up until the last week of treatment. Will you be one of the lucky who escape the worst parts of it, I don't know. Do read what others say they went through, but don't automatically assume yours will be as bad.

All the above was about the physical side of the disease and it's treatment. The rest of this is about the mental side of it. Cancer is a brutal assault on both your body and your psyche. The mental side is at least as important and maybe moreso than the physical. If your basic nature is to be a worrier or a fretter over what might happen instead of what is happening, then this journey will be a little more difficult for you. You will have a million thoughts over the next few months, some good some bad. The real test will be with what you do with the bad thoughts, how rapidly you analyze them, dismiss them and move on with your life in a positive manner, ie how little time you spend on the dark side. Worrying about things won't change the result at all, it just makes you miserable in the process. It will be what it will be is a phrase you will hear over and over from this group.

One of our members, username Bart taught me a phrase early on in my journey ... don't attach to outcomes. It means don't make an emotional investment in the outcome of anything. Rather than worrying that next CT scan result will show the tumor is getting larger or hoping strongly it gets smaller, leave the emotion out of it and just wait for the result to arrive. If you got your hopes up and then the result comes in negative your emotional investment in the outcome greatly increases your chance of becoming depressed over the bad result. A much healthier way to approach the result is to say, okay we had a bad result, what do I need to do next to counter it. Thinking that way keeps you focused on the positives of beating the demon instead of the negatives of losing out to it. Being able to stay positive in the face of bad news is critical to your long term result.

You don't know this yet, but Bart has had several cancer recurrences over the last 10 or 20 years. Yet he maintains an extremely positive attitude about the continuing battle. Imagine the psychological toll had he not remained positive. That's the real message here. Do a search on Bart and get a dose of his positive nature for yourself.

I've said enough, keep your chin up, we will help you with your journey every step of the way.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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