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#72266 04-01-2008 02:56 PM
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Geo Offline OP
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Does anyone know of any good support groups (especially one where survivors reach out to those going through treatment. My dad really wants to talk with someone who has gone through the same or similar experience. Especially someone who has had the feeling of having broken glass in neck area. We are located in the New York area and would appreciate any additional info possible.
Thank you.


Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.
Geo #72267 04-01-2008 02:58 PM
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Check for groups at your hospital. Where I was treated they have special counselors for cancer patients to talk to.


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
ChristineB #72268 04-01-2008 03:18 PM
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Geo Offline OP
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We checked at the hospital they only meet once a month.


Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.
Geo #72287 04-02-2008 12:51 AM
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Geo,

This is the best support group you could ask for. Get him to the site. I personally have talked to many people from this site, from Moffitt and from reading my newspaper stories and TV and radio appearances. I'm sure he can find one or 2 on this site that will be willing to spend some off site time with him but I'm positive he would GREATLY benefit from interacting on this site.


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.
davidcpa #72308 04-02-2008 06:16 AM
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Geo Offline OP
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Thanks. I'll do my best but he is not computer savvy and wants as little to do with them as possible. In the meantime, I guess I'll be the one trying to seek out all the answers,



Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.
Geo #72318 04-02-2008 10:03 AM
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Geo-
There should be someone at the hospital who runs the support groups(like a social worker), maybe they can put you in touch with one of the members who can meet with your dad in person so you don't have to wait for the meeting. There's a monthly support group out here and some members are always willing to talk in person with others. It's worth a try!
Melissa


Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
Mel_in_CA #72326 04-02-2008 11:58 AM
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You could also make a request on this site for anyone that may share his surgery and treatment to talk to him off site. I would/will but I didn't have any surgery so I could only address the concurrent rad/chemo.

If nothing else works then post his concerns/questions for him and print out the responses and let him read them. Maybe that will get him interested to begin posting himself.


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.
davidcpa #72329 04-02-2008 01:12 PM
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When I was first out of treatment I was trying to find an oral cancer support groups and they are few and far between in our area. What did work was asking my RO nurse if there were any other patients that were further out from treatment that could give me advise. They found several for me that were willing to talk and that was very helpful. You might try that and see what they say. They contacted the person and then asked them to contact me if they felt like they wanted to - so no pressure on anyone.

Talking to someone that had been through this in person was encouraging - knowing they were doing well and back to a somewhat normal life.

Cindy


SCC of tongue removed 3/07 mod. left neck dissection. Tumor reappeared 6/07. Removed 8/07, right neck dissection, free flap from wrist for tongue graph. Radiation 30 (IMRT), chemo cisplatin 4 rounds finished 11/07.
richmond girl #72530 04-06-2008 02:11 PM
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Geo Offline OP
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Thanks everyone. I will try all of the above suggestions. His main concern was the feeling of glass in his throat and I have heard from two members that they have experienced this.


Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.
Geo #72533 04-06-2008 03:10 PM
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Geo,

Bill spoke of razor blades...sounds like the same thing..very painful and warrants good pain control.

Stay strong,

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill

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