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Joined: Jul 2015
Posts: 6
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
Member

Joined: Jul 2015
Posts: 6
Hello Everyone,

I was diagnosed with adenoid cystic carcinoma nearly a year ago. I have had a lot of surgery and there is more to come in the next few months.

I used to have a large public life, but now, because of my facial disfigurement I have a small private life. It is however, no less happy.

I no longer work or volunteer. I do prepare delicious healthy food, exercise by jogging, joy walking and practicing yoga. I have lots of massages, and treats that pamper my soul, and I meditate everyday.

I am a learner and a good listener. I am keen to learn more about adenoid cystic cancer from people who have experienced it. I am keen to support others.

I look forward to getting to know you.



Adenoid cystic carcinoma - right maxilla
24.09.14 Right maxillectomy
08.12.14 Reconstruction of maxillary defect with left fibula free flap.
23.12.14 Endoscopic medial maxillectomy.
31.03.15 Completion of IMRT, 60 Gy 30 fractions.
24.08.15 Secondary reconstruction of right mid face, utilising right radial forearm free flap.

Happy :-)
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi Redpoppy, it sounds like you have adjusted well to what is an extremely life altering disease.
As a fellow Kiwi, I want to say hello and welcome.
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: Jul 2015
Posts: 6
"OCF Down Under, Kiwi"
Member
OP Offline
"OCF Down Under, Kiwi"
Member

Joined: Jul 2015
Posts: 6
Thank you for the warm welcome, Tamvonk.

It certainly has been a challenging experience. I am thankful for the all the support I have had from family and friends. I have made many new friends, increased my vocabulary, and taken on new learning.

In many ways this is a precious time in life. Time to reflect, appreciate, re-priotitise and think deeply. How often in your life are you given deep thinking time?

I am hopeful about the future, and think that everyone has a gift for the world, and I am currently reshaping mine.


Adenoid cystic carcinoma - right maxilla
24.09.14 Right maxillectomy
08.12.14 Reconstruction of maxillary defect with left fibula free flap.
23.12.14 Endoscopic medial maxillectomy.
31.03.15 Completion of IMRT, 60 Gy 30 fractions.
24.08.15 Secondary reconstruction of right mid face, utilising right radial forearm free flap.

Happy :-)
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Hi Redooppy and welcome to the neighborhood. While we have some ACC cancer survivors here, most of us are squamous cell carcinoma survivors. I love the place you are at with all this. We can all find solace and comfort that in the midst ofmthe storm, there still can be calm. Your words provide immense hope when I read them. Thank you for dropping in and bringing your sunshine and "Happy :-)". If there's anything we can do, just give a Kiwi holler. Tamvok and Alpaca have already trained us to listen and respond. smile


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
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Welcome to OCF! Here you will find many survivors, mostly SCC but we do have some ACC as well. Im very glad you have joined our group!!!

Looks come and go. Everyone ages and looks will fade. One thing that doesnt change is whats inside. The most beautiful person isnt always beautiful inside. I too, am disfigured from this horrible disease. Its something only those who live thru it can fully understand what its like to be disfigured. My life now is very different than what it was before I got sick in 2007. Some days I stay in so I dont have to face being stared at. Other days I can manage it better. I go out and go about my business, ignoring everyone's stares. Ive found that by volunteering it helps me too. By helping others who are sick with all the knowledge Ive picked up over the years it helps me by keeping my mind off my own problems. I dont work anymore but do spend hours every day volunteering, maybe this is something you can do as well. You have such a wonderful attitude for someone who has been thru so much, Im sure that could help others.



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: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
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"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Welcome from across the ditch. I see that my kiwi friends Tammy and Maureen have made contact.
Love your attitude and positive take on your situation. I don't thank I have ever seen such an optimistic first post as yours!
Also loving the Happy :-) in your signature wink
All the very best for your upcoming surgery.
Cheers Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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