| Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | [quote=bjlral] Take some time, to read and be encouraged and glean hope. [/quote] Love it. bjlral, OCF University is fitting. With the education that I've received from Brian, Charm (RIP), Christine, David, etc...I've been asked to teach at one of the top 5 dental schools in the country, and will be added to their curriculum in the next year. That's a testament to Brian's commitment to peer reviewed science and getting the latest information out there with the OCF website, the RSS Newsfeed, and these forums. The only thing I can take credit for really is an incredible memory and amazing communication skills...because I'm humble like that. Connie, we have several OCF members in your state and a great relationship with MDAAC in Houston, the best advice when dealing with cancer, is to get the absolute best medical advice available to you, the rest is up to how your body responds to treatment. Keep your chin up, and plug in for support often...and keep eating and hydrating!!! E
Last edited by EricS; 07-27-2013 03:24 PM. Reason: always spelling
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi Connie, Just going to add my hello and welcome you to the gang. It stinks that you have to be here, but we've all been where you are so completely understand the deer in the headlights look right now. Once you have a diagnosis and a treatment plan it really does get easier because you are fighting instead of waiting. Stay with us. 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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Connie, sorry you have to join our family, but welcome! There is a lot of good advice for you already as I can see, so I would just say that it helps sometimes when the going gets rough, to learn to take things one day at a time.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Connie, Welcome!
My cancer treatment center in Pensacola is affiliated with MD Anderson, and I can add my assurances that you are in good hands with them!
I'd like to reinforce what others have said, read the forums, starting with this one. Why, because each intro thread introduces new elements and elicits new suggestions from members who've BTDT and have a bunch of nifty shirts to prove it!
Be pro-active, and no NOT assume that you don't need to be involved. Even the best medico's are still human and forget minor details from time to time, such as scheduling events. Things fall through cracks, be on top of things and speak up if you aren't getting a clear picture of who, what, when, where and how regarding any part of your treatment/condition.
Good luck, and please keep us informed as to your dx!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hi Connie, sorry you're facing this but welcome to the best bunch of folks you could have on your side!
To all the great advice so far, I'd add try to get copies of everything -- pathology reports, operative reports, even bloodwork. The detailed info will help you sort out questions that come up as you go forward on this journey.
Hugs,
Mamacita
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jul 2013 Posts: 2 Member | OP Member Joined: Jul 2013 Posts: 2 | Thank you I enjoy reading what others post. Got my mask started today and get pet scan tomorrow.
Connie M.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Connie,
I see you've gotten a lot of great advice and encouragement already so I'll just say welcome, add my encouragement and tell you to hang on for the ride. It's a rough one but you'll make it through.
You didn't mention where you're seeking care but MD Anderson in Houston is the #1 rated CCC in the country. As others have mentioned being treated at or getting a 2nd opinion at a CCC is advisable.
Good luck, positive thoughts and prayers
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Connie,
One other thing that would help all of us that want to respond to your future posts and that is to add a Signature Line like mine and others. Go to My Stuff and Edit Profile.
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.
| | | | 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 | Connie, I sent you a private message (PM) a few days ago. Take a look towards to top middle of the page, next to the My Stuff tab. You should see a tiny envelope blinking. Click on that to get your PM. Please take a few minutes to review it. There is a link which gives detailed instructions on how to add a signature. It really is very important to have a signature, it helps us to help you.
Thanks! 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 | | |
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