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#197135 - 09/13/18 12:52 AM ORN, another conquerable challenge my way!  
Joined: Sep 2018
Posts: 1
Johnny G. Offline
Member
Johnny G.  Offline
Member

Joined: Sep 2018
Posts: 1
I wish to start my first post by commending Brian, Christine, David, Cheryl, Gary and all supporting staff for such outstanding humanitarian efforts in the creation of the Oral Cancer Foundation.

Hello Everyone!, my name is John E. G***** (Johnny G),

I, like you, am a Cancer survivor. I am new to the organization and I join with multiple purposes. I am a 59 year old, son, sibling, father of three boys & grandpa to three adorable rascals. Thru the past (17) seventeen years, I have been involved in helping less fortunate, healthy lifestyles, triathlons, marathons, open water swims which helped me beat my cancer. It is my objective to obtain educational information that will help me grow and address inevitable challenges ahead and hopefully I will be able to share experiences and understandings that will help others survive and attain quality of life during the process of addressing the Cancer that has intruded and affected our lives. I was a pioneering CT Scan Radiology Technologist exposed to radiation. It was concluded by experts & Departmental Chairmen treating me from Florida that radiation exposure was the cause & origin of my Cancer.

1) MAY 2001 I was diagnosed Cancer of Unknown Primary "CUP". One lump in the right side of neck. Confirmed thru fine needle biopsy and CT scans .
Classification: T1-N2-M1 Squamous Cell Carcinoma manifested as one lymphoma tumor or mass stemming from right side of neck lymph nodes which rapidly grew to 2.0 cm and later considered a single metastatic lesion.
2) Subsequent work-up including blood &urine tests, diagnostic imaging studies, Bone scan, whole body CT & MRI could not find Primary site.
2) June 2001 I had a Radical Neck Dissection surgery done.
3) July To Sep 11, 2001 Bilateral Radiotherapy of neck completed at Sylvester Cancer Center done in Miami, Fla.
4) Had laryngoscopies, blood tests and whole body PET/CT exams for metastasis and /or recurrence every six months for seven (7) years.
5) OCT 2008 Released by primary ENT physician, he considered me cured.
6) July 2017 diagnosed with left sided ORN osteo radio necrosis of jaw.
7) Sept 2018 diagnosed with right ORN of jaw. diagnosed thru 3D Cone beam CT.

Since release from primary physician in 2008 I have been battling with consequences of radiotherapy which include, feverish onsets, dry mouth, cavities, tooth decay, abscesses, inflammation, jaw locking including loss of molars with bone exposure and fistula among other disabling conditions related to ORN.

I am presently under treatment and have been told a full mandible reconstruction is inevitable. I am in the process of learning more everyday about what is coming my way. I have been told the required surgery & recovery costs roam around $500,000.00 USD (half a million dollars) and possibly more. I am aware of free flaps, skin grafts, tracheotomy, implants and other details of surgeries and recovery issues involved in the forthcoming procedures.
I humbly and respectfully request information that may help me jump over known obstacles ahead to ensure prompt recovery.
Open to all pertaining to the above, I remain.
Best,
Johnny G

Last edited by Johnny G.; 09/13/18 04:02 AM. Reason: removed identifying info

Johnny G
#197136 - 09/13/18 02:11 AM Re: ORN, another conquerable challenge my way! [Re: Johnny G.]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
Welcome to OCF, Johnny! You have found the very best place to get info and support. Theres so many stories and other things on the patient support forum you can learn from reading. You can also spend hours reading and learning more about your illness, procedures, etc on the main OCF site as well.

It sounds like you have considerable experience with oral cancer from your 17 years of dealing with it. Thats a very long time as Im sure I dont have to tell you!!! Oral cancer (OC) is a difficult cancer to fight for most patients but it can be doable, especially with our help. The best thing you can do is what I advise (some would call it nagging... LOL) all our members who are just starting out... focus on your intake and start eating all your favorite foods so you dont go into anything with cravings.

I suggest reaching out to The American Cancer Society (avail 24/7/365) and ask about their medication vouchers, help with transportation costs, and volunteer driver programs. We have a list of financial aid located on the main OCF site you can check into. I dont know the criteria of each site but you may get lucky and get some help, at least I hope you will.







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

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