#7278 03-21-2006 05:22 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | My doctor here in Dallas is heading up the HNC at Vandy, of all places! I will try and get one of the OCF cards to him to pass on to Bobby Hamilton. It gives me an excuse to contact him anyway. I'll let you know.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#7279 03-25-2006 07:52 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | I got this back tonight. I followed up with details of our meeting at Richmond the year I got sick, I expect to hear back and I'll get some more contact info for Brian. As many of you are aware, NASCAR has a very large and loyal fan base. They could help here, a well placed booth at a race could net a lot of support. Glenn - I personally read this to Bobby. He thanks you for your support. It has been overwhelming the amount of cancer survivors and families of cancer members who have contacted him with such kind words for his own battle. Bobby's goal is to become one of the many spokespeople for everyone who has been inflicted with this disease. We appreciate the website and I took a look through it. It really helps give us an idea of how much is involved here. Thank you again for sending support and kind words to him during this trying time. It is great to hear such wonderful stories of survival such as your own. We hope your battle goes smoothly and hopefully we can use your knowledge to help Bobby and other cancer fighters. God Bless you and your family. Lori Shuler BHR In a message dated 3/17/2006 3:17:35 PM Central Standard Time, [email protected] writes: Lori, I figured I would try you as a point of attempted contact. I am a NY area NASCAR fan who has been dealing with the same type of cancer for 3.5 years. I live in the NY City area and have experience and Doctors at the top hospital, MSKCC, in the area. I am, additionally, very knowledgeable on the subject of treatment. Let me know if I can offer any kind of support or information. Also, check this site < http://www.oralcancerfoundation.org> | | |
#7280 03-25-2006 07:58 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Pam,
For2or6, Is that NASCAR related? If so, email me your postal address. I have a very nice 2 related item I would like you to have. That would be the old 2.
Glenn | | |
#7281 03-26-2006 03:05 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I also received an email back from Lori. She prints these out for Bobby to read. Maybe after he's done treatment, Brian can talk to him and get him to do some public service.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#7282 03-26-2006 03:54 PM | 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 | While anytime a celebrity has a brush with this disease there are opportunities for OCF with them, (Blythe Danner, Jack Klugman, and Gwyneth Paltrow as prime examples), we need to remember that right now the most important thing is to see that IF Bobby needs someone to talk with that has been down this road before him, we are there for him, and if his family etc. has questions, we are here to help them get through the process and make the best decisions they can as issues come up. When Bobby comes out the other side of this, we can think about how his celebrity could help the cause. Right now it is about us helping him. Glenn - if you wish to give my phone number out, I would be happy to spend as much time as necessary to help Bobby and his famiily get through this. Also if you would forward Lori's email address to me I would appreciate it.
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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#7283 03-27-2006 05:23 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Brian, In the email I sent to Bobby I offered support and also gave him to address to the website. No mention of needing or wanting anything from him. Hope you have luck contacting him, Lori is very kind and friendly.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#7284 04-06-2006 03:45 PM | 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 |
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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#7285 04-14-2006 01:59 PM | 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 | It appears that Bobby's desire to help by putting his celebrity weight, along with that of a major sponsor ( Craftsman), didn't take long to manifest itself. He surely is to be commended for this effort. I wish that they had considered helping an organization like OCF, which is related to his specific disease, as opposed to the ACS Relay for Life effort which is already bringing in hundreds of millions of dollars on its own. No matter - good for him and his effort. We'll fight on to help those with our unique disease... celebrity support or not. OCF will continue to do everything that our small financial resources will allow us, to see that people get good information, find support when they need it, and advocate for change in early detection with the powers that be in Washington (NIH, Public Health Service and the Surgeon General's office) and Atlanta (CDC). http://www.backstretchmotorsports.c...&task=view&id=1490&Itemid=39
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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