| | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Well I am in for NY ..anyone else want to join me ? I know that there is a support group here about 1/2 hour 45 minutes from me .. When I get some info I am going to go to the group and present it and see who I can recruit to help get this off the ground . I can almost Bet my Ent will do as much as he can .. Ready to get moving !!!
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | OK, so far we have
Amy McCann /VA
D'arcy Alt / West VA (need all contact info still)
Christine Brader, Jerry Wilck, and Donna Amos / PA
Sharlee Ringer / NY
Michelle Reeder / AL
Malka Lew and Colleen / LA (still need all contact info for Colleen)
Bill B / GA (still need all contact information and additional help in this state)
John R / Indiana (still need all contact information and additional help in this state)
Have I messed anyne so far? Also multiple people in any state is a good thing. If you are in a state already mentioned don't let that deter you from being part of the team.
There's a lot of states left......
Last edited by Brian Hill; 04-15-2008 06:33 PM.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Brian,
I am set up at gmail
I'll email the rest of the info.
Jerry
Last edited by Brian Hill; 04-15-2008 06:34 PM.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hey Brian,
Sent you a PM. All my info is sent.
set up dedicated email:
Last edited by Brian Hill; 04-15-2008 06:34 PM.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | Ok Brian, I just sent all my contact info. I look foward to hearing from you. 
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I will update the list of states this weekend. But I want to thank those of you that have tossed your hat in the ring right from the get go. This will really help us make progress in your states.
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: Mar 2008 Posts: 21 Member | | Member
Joined: Mar 2008 Posts: 21 | My husband and I are in for West Virginia...anyone else want to join us. Please contact me and let us know.. [email protected]Jake and D'Arcy Alt
caregiver to father, stage IV SCC with lesion on base of tongue and mets to right lymph nodes. Current chemotherapy taxol, carboplatin and erbitux. Will start radiation 4/1/08 7 wks, 35 treatments with questionable radiacal neck at end of radiation.
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I will be in Boston for the weekend ..so I dont know that I will be checkin my mail...But I shall be back ON MON !!!! Raring and ready to GO !!!!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Hi Brian, I'm not sure if you are planning a similar scenario for Canada but, as I stated before I would be willing to participate. I have set up a Gmail account: [email protected]Hope I can help out whereever possible. Cheers, Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Thanks Mike, I think the first thing to do is determine in your province what is the lay of the land. What do you think we can do there? What I will do is for now copy you this weekend on what I am asking of the others, which is going to be contact and fact gathering first, so we know who we need to work with in each state. Then we are going to have a discussion about with which of those contacts can we make something happen. A screening event, a media PR event, etc. So I think it shouldn't be any different in Canada, but I need to understand it a bit better before I leap.
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.
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