#88731 01-23-2009 02:26 PM | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | I've just joined this forum and in my roaming around, reading posts, I'm seeing several folks from Washington state, as I am. I'm on the west side of the state, had my tx at Virginia Mason and have asked around quite extensively about OC support groups and no one I've spoken with knows of any. Do any of you from here know of any? Thanks, Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Carol,
It would be a pretty small group! I would check with the hospital social worker, then try the support groups page in the newspaper. You might find some "rogue" H&N patients or survivors in the mix. I have also advised my head & neck surgeon that I am willing to work with patients one on one but after 6 years, I haven't had any takers. I do work with patients directly from time to time - just not from the hospital where I was treated. It could be a risk management issue or they wish to promote their own in-house therapy. Other than the first (and probably last) OCF Las Vegas reunion, I have run into maybe 6 OC survivors in the past 6 years just out and about.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2007 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2007 Posts: 148 | Carol, I found this site through the American Cancer support sites maybe you can locate the AMC there. My daughter lives in Bremerton Washington I will ask her if she can find some for you where in Wa do you live?? Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Gary, I have a patient I'm working with right now. She's just getting ready to go into treatment. I have a friend who has worked with over 900 patients. She's a breast cancer survivor. I'm looking for more and with her help, will probably find more. I had no clue about this stuff when DX'd and couldn't find anything other than seriously dismal news regarding it on the internet. How I missed this site is beyond me. I even started a message board of my own to meet other OC people. It was when I shut it down that one of the guys found this place and directed me here. I only had about 50 members with only about 8 doing much talking. It would have been good to be able to come here and find things out. I was lost and now I'm not. I will share this site with the others. Thanks for doing this.
Brenda, I live just north of Seattle. The only sessions I have found to attend are for any cancer people. I'm starting one next month for Stage 4 cancer survivors. I'll see how that goes. Thank you so much but I think Bremerton might be a bit of a drive for me. Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Sep 2007 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2007 Posts: 148 | I love seattle. Beautiful place, have you been to pikes market? Gosh thats a cool place.
Heres to your health.I am glad you found this site I love it. I always get alot of good answers here, I just have to be able to sit here for a while but I have no cush on my tush anylonger so I sit and go. Good luck, Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | | 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 |
Unfortunately the support groups for head and neck cancers are pretty rare. My area has several OCF members which I have been fortunate enough to meet. This is pretty unusual. I would suggest asking at your cancer treatment center if there is such a thing available. One OCF member started a group at their treatment facility, so that may be something to try.
Hope you feel welcome here. Think of OCF as your big extended family, a place to go where people really do understand how you feel. Its not easy to explain, but seems the ones who understand the most are OC survivors and their caregivers.
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: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Brenda, When I go to my appts, if they are spaced an hour or two apart, I walk down to Pike Place and buy flowers. They have the best places. Also, I like to hang out and watch the "flying fish". They put on a pretty good show. Can you sit on a pillow? Also, with your back pain, have you tried those Therma care things? They have helped me in the past with back pain. Christine, I feel very welcome here, thank you all for that. In fact in the last few days, since I joined, it's been hard to walk away from the computer. I feel as if I just found a new family I didn't know I had. About the support groups, I've asked all over Seattle hospitals for an OC one and they say there aren't any. I do know a few people that have had it so maybe we'll start our own. Thanks for the idea.
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Had my treatment in Seattle, lived there all my adult life in the S. Sound area, Federal Way mostly. Moved 3 years ago back to my hometown in North Central Idaho where sadly there's not many cancer survivors at all.
If I get a recurrence I'm moving back to WA though due to the medical marijuana laws and they passed i1000.
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.
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