| | Joined: Mar 2015 Posts: 2 Member | OP  Member
Joined: Mar 2015 Posts: 2 | Hello,
I'm new to your OCF Forum. Thanks for making this available to all!
My mom just reached out for help for info for a loved one starting radiation & chemo on 3/30/15. Here are her questions:
1. Do you have any link to support group?
2. Get her in contact with people who have had treatment, radiation and chemo.
Any and all advice welcome!
Thank you! | | | | | 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 | The Oral Cancer Foundation (OCF) is an online support group full of oral cancer patients and caregivers.
The patient or caregiver would need to ask at the treatment facility what other support is available at that location.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | There are local chapters throughout the country for SPOHNC, Support For People With Oral and Head and Neck Cancer, that meet monthly. There is one in Detroit at the Henry Ford Hospital that meets the 1st Wednesday, every month, 4-6pm. https://www.spohnc.org/local_chapters.php
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
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Face to face support groups in many cancers including H&N were around before we put this forum up in 2001. Online forums for this kind of thing were unheard of. Having attended one of those mentioned (UCLA), I found that I had issues almost daily, questions I needed answered...but by then I was far away from my treatment team, (Huston) in a protracted recovery with tons of things still going wrong. Still on opioid drugs, still on a PEG, and still emotional screwed up in spades. Meeting once a month with people who were like me still mostly in treatment or a couple very fresh out of it, I decided wasn't as helpful as I thought it might be though I liked the camaraderie of seeing someone in person. That's when OCF started this forum, because I never felt that once a month was going to be enough, and that only 10 or less people at most of the meetings were going to offer me the insights that I sought. The nurse that monitored it wasn't allowed to give out medical advice to patients who were not hers, and that was an additional issue.
So OCF bought this software which has now helped over 11,000 registered users, and hundreds of thousands of lurkers that come but do not post. If someone can be taught to use a computer (age can be a disqualifying issue sometimes as they are less computer conversant than others) this is a place where they will find carefully vetted information, emotional support, and yes even love from people thousands of miles away. I think she should try it, since the format has stood the test of time.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Make certain to direct her here! This is the most medically factual and knowledgeable online forum I have found focused on oral cancer. There is both wonderful medical and emotional support here.
American Cancer Society has a head and neck forum. It is also very good and active; it is stronger for those seeking emotional support but there are plenty folks who have been through it all too.
Check with the local groups of cancer support organizations.
As Brian points out, online forums are far better at communicating with a greater number of people in a more timely manner. Since she has not started treatment, really try to get her to join online groups and get some PC support if she needs help navigating around the forums.
Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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