| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Suzanne, it was amazing. They even raised enough money to buy both Steve and I really beautiful watches as a going away gift and in total I think they raised $1500 cash for us to travel on. An amazing group of people, the best I've ever worked with. Miss them all every day still.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have to add to this. I was abot to use a teachable moment the other day at school. I was reading a math to test to soem of my special ed. student, they are 8th graders, and one of them asked me where i was from. They said that I had a cool accent. It made me laugh a little. I told those girls that there is a good reason why I have an accent, and I told them that if they wanted to know they could ask me after class. Both of the girls came up to me and asked me. I told them that I had part of my tongue cut off in April due to cancer. They seemed amazed because they had never heard of tongue cancer, but wanted to know more about it. I loved that they thought i had a cool accent. It brightened my day.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Don't you just LOVE it when... you get excellent service.
Yesterday I was at a pharmacy looking for a particular dry mouth product which is not available at all pharmacies. They didn't have any of it in stock and the pharmacist ducked behind the counter and tapped into her computer and in 2 seconds she said "we can have that in for you on Monday, and if you are unable to come back into the store we can deliver it to your home at no extra cost".
How good is that, and the product only costs $8 !!!
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | ...you meet people IN PERSON that you have gotten to know on this website? Go to an OCF event and meet your OCF buddies!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Anita,
It is truly a wonderful feeling. Meeting you and Chuck yesterday was very special. Susan and Harry are old friends already and it's going to be great to have you at the David Nasto Memorial walk in Sept. I'm hoping that ChristineB, Ray, Suzanne and and Susan2992 as well as some others will be there, too. Suemarie has been there both years also.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Alex and I have been diagnosed since early March so the outpouring of concern and support is still overwhelming. So I have a list of people who do things I love Work for giving me whatever time I need. My own boss who reiterates on a daily basis the need to look after Alex as a priority and don't worry about work - all under control. People from the managing director to the coffee cart guy who ask after Alex and listen to the answer. My assistant who just makes decisions for me and tells me what she has done when I finally show up. My reports who ring or text weekly to say they are fine and nothing to worry about instead of ringing daily with demands and requests. My colleagues who tell me I look like I need a hug and do. Our friends in Melbourne who send text messages - not requiring answers -just "thinking of you" type messages. My parents who immediately recognised a looming financial crisis and dropped money into my account without a word (took me awhile to realise where it came from). My work mate who leaves notes on my desk to tell me she has left some corned beef/spaghetti/chicken/lasgne in the fridge for me which turns out to be a whole plated dinner that just needs reheating. My old school friends who invite me to everything knowing full well I can't go but still invite me anyway. The concern of the oncology ward staff, the community professionals and the doctors is just amazing. How do they do it for everyone, dozens of times a day, week in week out?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Glad to see newer members like Klo checking out these old threads. Newcomers may not remember Pete D, who is now having a terrible time of it (you can go to Friends forum and get the caringbridge link posted by Christine if you want to cheer him up). What I love is the spirit and sense of humor expressed by Pete that still shines thru the cancer. Here is a poem his daughter shared on their Caringbridge journal that he used to recite over and over to her as a child
[quote]As I arose one morning when all sweet things are born, a robin perched upon my sill to signal the coming morn.
The bird was fragile, young and gay - so sweetly did it sing, that thoughts of joy and happiness into my heart did bring.
And as it sang its cheery song, I slowly crept up out of bed. I gently closed the window and crushed his *frakking head.
[/quote]
Of course I am biased as Pete was also a BSG fan as his daughter explained: [quote] *as a child it was "goshdarn", he updated it recently after three seasons of Battlestar Galactica to Frak. [/quote]
charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | I think that my group of friends at Schnauzer Love Rescue saved my life. My husband is not the type to realize that I needed a specialist to get me out of ICU after 11 days. A couple of members of our group researched and found the Best Pulmonary Doctor. They then explained to him how to demand they call him in to see me. The hospital agreed and within an hour of his visit I began to improve and haven't stopped yet. If they had not done that I am not sure I would be alive today!
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | ....you read such positive posts on the forum!!!!! Anita, cant wait til the fall to finally get to meet you and your husband at Susan L's walk. There is another walk the following week in Bethlehem most of the same people will be attending too ChristineSCC 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 | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Christine,
I am looking forward to meeting you in person. I haven't posted here very much lately, but I do read what others are writing. I will write an update soon.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
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