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#178553 03-21-2014 09:01 AM
Joined: Mar 2014
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OzMojo Offline OP
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Hi everyone. I found this site Googling T2N2b and found Hellion's post, his situation is very similar to mine.

I'm 46 from Brisbane Australia. Diagnosed by FNA about a month ago, followed by the CT, bone scan, MRI, PET and lots of blood tests. Then off to the head and neck clinic where they determined my best course is to have 7 weeks of radiotherapy, and 3 lots of chemo, starting 31 March.

I had three teeth taken out on the right side last week, it wasn't much fun but at least I've got gargling salt water down pat!

I went to a psychologist just for some techniques on how to deal with everything. Coping with a worried wife, telling the kids, how to relax and sleep. He was pretty good but it was mainly for coping with the waiting stage. Now we're into the planning appointments, making the mask, talking to speech pathologists and dieticians etc. My wife comes with me for all these things. She's a great support, and its really helpful to have another set of ears absorbing the information I might have missed.

Of course I've been reading a lot, Google can be your best friend or worst enemy. Tip: If you are lying awake trying to sleep and wonder what a radiotherapy mask is, don't do an image search! Took me hours to get to sleep after that!

One of the scary things is your signature blocks. Many of you have been on this ride for YEARS! And you're the survivors. I don't want to be on this ride now, let alone in a year's time. Of course I'm scared, but the biggest battle is in my head. I'm going to win that and I'll tell you why.

I have a loving wife and 4 kids, and I have 3 grandkids who mean the world to me. My first grandson was born on the day of my first CT.

My eldest granddaughter is 4. I looked at her and wondered how I do I tell this wonderful little girl her Poppy is sick and needs to go to the hospital to get better. She took it in, processed it as she does, and told me the answer. "I went to the doctor and I got 3 needles and he gave me a lollipop. You know why? Because I was brave. You get a lollipop if you're brave Poppy." I hugged her tight so she couldn't see me cry.

So there I was in the MRI, freaking out in this tight tube with the mask and the loud noises, and there she was, in my head, telling me to be brave. And I was. And I will be.

So that's my intro post about me. You wouldn't be reading this if you didn't have a battle of your own, and my thoughts and prayers are with you.


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.
OzMojo #178554 03-21-2014 09:34 AM
Joined: Nov 2013
Posts: 18
"OCF across the pond"
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Hi,

You sound extremely positive and that is the best thing. Stay positive and strong. The support here is great when you need it. I always found myself reading posts in the wee small hours when I couldn't sleep. You're absolutely right about Google - it can be dangerous to your peace of mind. Ask questions here, someone will try to help but remember, we are all on similar journies not identical ones and so our experiences are different. It's a very good idea to take someone with you to hospital appointments; it's very difficult to grasp all the information being thrown at you - I also used to write down any questions I thought of between appointments in a note book so I didn't forget to ask. I know what you mean about the MRI - I had a panic attack the first time they tried to put me in it but like you thought of something important to get me through it, in my case it was my daughter. Good luck with the radiotherapy.

Cheryl x


Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
OzMojo #178555 03-21-2014 10:05 AM
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Welcome OzMojo, I assume it's Base of Tongue or Tonsil being p16 positive, indicating possibly HPV-16, but not necessarily all the time. If so, both are good prognostically. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






OzMojo #178557 03-21-2014 10:39 AM
Joined: Mar 2014
Posts: 286
OzMojo Offline OP
"OCF Down Under"
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Thanks Paul, its tonsil, well its where my tonsils would be if they were still there. Its P16, not necessarily HPV but yes, the prognosis is good.


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.
OzMojo #178558 03-21-2014 01:38 PM
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Welcome to OCF! Glad you have found our group. We have many members from Australia. You will gain both info and support here. We will help you get thru this.

You are so right.... when its nighttime and your mind starts to wander.... NEVER get online. One page turns into 100 and the same goes for searching for things.

One of the most important things you can do is pay close attention to your intake. Now is the time to eat as much as you can, especially eating all of your favorites. You do not want to get half way thru treatment and have cravings. Your intake should be a minimum of 2500 calories and 48 oz of water every single day. This may sound like alot but its not. Your body is burning up calories at an incredible rate and that will increase as treatments begin and thru out recovery.

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
OzMojo #178561 03-21-2014 07:15 PM
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Hi welcome... And stay strong... smile


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
Joined: Mar 2014
Posts: 110
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G'Day!

I responded in the other thread, too, but I wanted to say that it's kind of cool to have a cancer doppelg�nger! Well, cool may not be the right word smile -- but cool insofar that as we both have it and can't change that, we might as well decide to be impressed by the coincidence f similarity!

One thing I have to ask -- what's it like in the future? Is it all flying cars and food pills? (I never get tired of that joke when I talk to Ozzies/Kiwis).

Keep me posted on how you're doing if you like, and I'll try and do the same.

We're like cancer twins!!

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
OzMojo #178593 03-22-2014 05:00 PM
Joined: Oct 2011
Posts: 805
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You and Hellion...We are here for you and your wives. It's great your wife goes with you to your appointments. She might want to consider coming here with her concerns and questions. This group was a Godsend for me.
Your attitude is awesome. Like I told Hellion...that's half the battle!!!
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
OzMojo #178595 03-22-2014 06:26 PM
Joined: Mar 2014
Posts: 110
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Posts: 110
Hey Oz,

Not sure what happens to some of my posts. Looks to me like we're Cancer twins separated by half a world -- seems like we have every excuse to compare stories and get throgh this together!!

No matter what, I plan to stay positive and let the experts do what they need to do.

How is life in the future? Is it all flying cars and food capsules?

I never get tired of that joke when I talk to Ozzies and Kiwis!

Cheers, mate, and let's stay in touch here!

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
OzMojo #178613 03-24-2014 02:12 AM
Joined: Nov 2006
Posts: 2,671
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Hi Oz - I am sooo glad you found this great place to be! It sounds like you and Hellion make a good team. It's great that your wife goes with you to appointments to help in remembering what happens and ask questions. I went with my son to his appointments with the cancer team and to the Rad Tx. There were many times when a nurse friend of mine as well as my daughter also came with us. Sharing moments like these does lessen the stress level and keeps everyone focused on the positives. As you progress along this journey you are on, you or your wife might think of things that need doing, so if anyone asks how they may help, have your list ready - like picking up prescriptions, fixing a meal, laundry, walking the dog, etc. They can pick from the list and it will leave you free to concentrate on getting better. It will help them, too - to keep busy and lessen the time they have to worry about you. Your granddaughter sounds precious! Maybe she will bring you a lollipop after an appointment or Rad Tx? My granddaughter was just about the age of yours, when my son was in Tx and it's amazing how much little ones can really put a smile in an otherwise stressful situation. You have lots of support with your family as well as here, so keep coming back often and let us know how you are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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