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#182497 06-17-2014 12:01 PM
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JGD99 Offline OP
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I am a male, 57 years old and in pretty good health (@ YMCA for aerobic & weights or yoga average 5 X a week). On Friday, May 31st, I found a lump in my neck, which a doctor dismissed as a blacked salivary gland. She told me to call on Monday to make an appointment to see an ENT if it was still bothering me.

So far, it was only bothering my vanity-- no pain as yet. But on Monday I made the call, and was told I could be seen in one week, (June 9th). When I did see my ENT, he had a "hair on fire" reaction, saying "When we see a guy in his late fifties with a lump in his neck, we pay attention."

A biopsy confirmed Squamous Cell Carcinoma, and then later placed its origin as HPV p16, currently Stage 3 N.

Now I am having a surgical biopsy tomorrow, as the PETscan revealed a tumor at the base of the tongue. My ENT had said some of these cancers, when identified as one source tumor, can lead to a surgical removal and a "watch and wait" approach with no chemo or radiation. But, when we got the results, after a meeting with a radiation oncologist, the plan is radiation and chemo for a schedule of 7 weeks. This doc seemed eager to yank teeth, but a full set of X-rays revealed no problems, so that's a relief.

Same doc (the radiation oncologist) referred to the eating tube as something they sometimes have to use later in treatment, but something he might want to do prophylactically, weeks in advance.

That's depressing, as that might lead to more inactivity (no yoga & limited workouts), though I understand I won't want to work out on many days).

One would hope that by working hard to stay fitter than 85% of my peers might make me a candidate for no eating tube, but maybe it just doesn't work that way.

Also, of course, I will be meeting with a speech and swallow therapist, and if we put the tube into my stomach that would seem to work against regular swallowing. Perhaps it is just necessary sometimes, and difficult or impossible to perform the procedure when you are really chemo-sick.

Any info about these concerns would be helpful.

Thanks,

JD


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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Welcome to OCF! You have found the best source for info and support to help get you thru your upcoming battle. Stick with us and we will help you every step of the way.

Many patients who are seemingly healthy are diagnosed with HPV related OC. Its not uncommon for there to be few if any symptoms.

There are so many appointments and tests to do before starting treatments. You mentioned already seeing your dentist. Did they take molds of your teeth to make flouride trays? If not get that taken care of prior to starting rads. You also should have a full blood work up including thyroid and testosterone counts.

Even if you would end up with a feeding tube, you still will want to swallow at least water several times per day to keep your swallowing muscles active. Believe it or not they can quickly forget when not being used daily.

Your intake must become your main priority starting right now until at the very least you hit your one year post rads anniversary. Every single day you should be taking in a minimum of 2500 calories and 48-64 oz of water. If you lead an active lifestyle and are working out you would need more, maybe even 3500 calories daily. No it is NOT too much! Your body is compromised at this time so it burns calories at an incredible rate. During recovery you will need to rebuild your body so it needs extra calories to do so. This is something you cant skimp on. Not even for one day as it quickly turns into a downward spiraling cycle which ends with malnutrition and dehydration, both are not fun.

During your treatments you might not feel up to hitting the gym as hard as usual. Many patients have had to put their workouts on hold for a couple months until they get back on their feet.

Anyone who offers assistance to you, take down their name and number. Tell them when the time comes you need help you will let them know what they can do. You may need a hand with picking up prescriptions from the pharmacy, doing a load of laundry, helping you with light housekeeping or even driving you to treatments. Many patients lost their ability to drive due to pain meds so its a good plan to line up some helpers. Hopefully you have a caregiver to help you. If not then it would be a good plan to find a few helpers you know you can count on when you need a hand. Dont be shocked if people you know change. Some run for the hills while others you barely know will become your best allies. Its nothing personal, some people have a hard time dealing with illness of those close to them.

Its a long road but you will get thru it. Feel free to ask us any questions you might think of. We will help you as much as possible, you're family now. Best wishes!


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: Jun 2007
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PS... Almost forgot! I also suggest going to a major comprehensive cancer center (CCC) for a second opinion. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get another opinion.


CCC list

US News Best Hospitals List


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: Sep 2006
Posts: 8,311
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JD,

You maybe my twin. I sent you a PM. Look at the top for a flashing icon.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi there. The feeding tube is an individual thing. Be honest with yourself. You're an athlete, in pretty good shape, right? Most men think their tough. Which in some instances is true, however radiation can be brutal. So that said - can you force yourself to do things that are exceptionally painful? Like eat and swallow when your mouth and throat is on fire, and raw and full of sores? (It really does feel like acid is eating away at your throat and mouth). This is enough to challenge even the hardest and toughest person. Nutrition and hydration are primary in fighting this cancer and healing. So if you think for a second that maybe you won't be able to follow through with the meds and nutrition etc... a peg might be a good idea. That said it should not be the sole method of ingestion. Regardless of tube or not you need to keep swallowing even if it's just a little liquid otherwise you could find yourself on a tube for life. I had a tube at the insistence of my dr. couldn't use it. Had it removed 2 weeks post radiation. Did I regret having it? No. It was a just in case for me.

Regardless, sorry you have to be here, and welcome.

Best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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JD, welcome. Sorry you have to be here, but you're a member of our family now and we're here to help. You've already heard from some of the very best people.

Cheryl has some excellent things to say about the PEG tube. I was one of those who chose not to have one, and I regretted it. I'm happy to discuss this with you at any time, either through PM or over the phone, so send me a message if you're interested.

We'll be with you every step of the way. You'll get through this... it'll be tough at times, but I know you can do it.

All best thoughts your way.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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JGD99 Offline OP
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Thanks so much for all the warmth and welcome. I was moved to think of this song from Yes:

"I've seen all good people turn their heads each day
So satisfied, I'm on my way
I've seen all good people turn their heads each day
So satisfied, I'm on my way

Take a straight and stronger course
To the corner of your life..."


Today I had surgical biopsies, and then my niece came to babysit Uncle John. I did not think this was necessary (my wife was engaged in taking our daughter to the Prom-- both our kids are in the autism spectrum, and Caroline has just graduated in April into adult services; this was Caro's first visit back to residential school since then, so a big deal, and Dad having cancer is no excuse! both kids live in group homes, btw, the most relevant issue for this forum).

So Judy saw me through the brief surgery and recovery, and Janean came over about 3:30 or so. Here's my relationship with this surrogate daughter Janean: her dad is deceased, and her mom is a long term substance abusing narcissist horrible parent, and don't ask me what I REALLY think of her ;-)

Anyway, Judy and I are appointed grandparents to Janean and Andy's two beautiful daughters. In fact, I spent most Fridays at Janean's for her eldest's first year, when she worked, taking care of Nora. She had another pretty quick, so it's a 3 year old and an 18 month old, which means she and I don't finish many sentences (nor say the full ones we'd utter without kids present-- she's full time mom now).

But today she was all mine. We sat out back in the sun, watched my koi & birds in the waterfall, and then we went in and watched some TV-- some funny stuff and the beginning of Pixar's "UP". That was powerful and amazing anyway, but now it's like they were reading my mail;-)

I have heard the odd expression " a gift that cancer gave me " , but now I have lived it. And I am still a puppy at this; I know so much more and worse will come. But something good came, too, and "they can't take that away from me", as they say. More tomorrow (and maybe more on medicine and less ethereal).

Peace out,

John D.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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Posts: 559
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Hello John - welcome to the family. You've already seen how knowledgeable and caring your new brothers and sisters are. We will help you get through this.

You were in fit shape before diagnosis, that endurance will help you fight the disease nicely. I had very few problems during treatment; other than a little fatigue which was taken care of with a daily 15-30 minute nap. Nothing else changed for me during treatment. I'm a pretty serious dancer (swing, ballroom, country, latin) and I didn't have to give any of that up during treatment. Dancing is not running marathons (have done 3), but it isn't sitting on the couch either.

So, do what your body will let you; it will tell you when enough is enough. More importantly, eat as if you were trying to get fat. You won't get fat, and you likely won't gain a single pound. The disease and it's treatment are consuming 2/3 of what you ingest every day, so unless you want to live on 1/3 of your intake (which won't work) you simply gotta increase intake. Add in exercise during treatment and you have to eat a lot more.

Some treatment centers install a PEG feeding port on all patients, some don't. Let's hope you can avoid one.

take care,
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

Joined: Mar 2014
Posts: 286
"OCF Down Under"
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Welcome aboard John. Sorry to meet you here and not at a beachside bar. The PEG debate is one for conjecture, some people have it and some don't. I was lucky enough not to.

Don't go Googling everything, you'll scare yourself to death. But if you're like me you can't help yourself and you'll Google anyway. I've come to realise every cancer case is different. Decisions are made on a whole range of factors that you might not pick up in your searches. What you can use the internet for (including this forum) is to help you understand the torrent of information the Doctors are giving you.

The next few months are a tough journey. Post your questions and let us know how you are going. We've all gone through our own battles but everyone here will tell you what I'm sure you already know, a positive attitude makes all the difference. It may be hard to do that when you're bent over a toilet bowl or sitting on the floor of the shower crying, but its at those times when you need it most.

For now, as has been said many times before and you'll hear many times in the future, EAT EAT EAT! Pretend you're a bear going into hibernation because the more reserves you have going into this the better off you will be. Its too late in week 5 when you're flying from one side effect to the next. You want to be having a steak every night you can because soon enough you won't have the option.

God I miss steaks. Maybe another couple of weeks!

Best of luck John. Let us know how you are going, don't hesitate to let us know how you are going and if you have any questions we can answer.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Hi John, welcome, from another New Englander.
Glad you caught things early, makes a big difference. Look like you have a good start. One item to be aware is the care giver, and family impact, even if you have older kids. only after 2 years did I learn how hard the kids took the initial news, everyone hears the diagnosis of stage 3 and assumes the worst. Even for the caregiver it is a huge emotional and physically draining road, strengthen it up early, plan for some extra help.
Here is a news article I just came across last week, didn't see it on OCF sight but probably there. Might be an interesting add to your medical discussions if you fit the category.

http://news.vanderbilt.edu/2014/06/...tients-may-receive-lower-radiation-dose/

Take care..
Mike


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
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