| | Joined: Mar 2010 Posts: 30 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2010 Posts: 30 | Hi everyone! I work for OCF and am currently reaching out to cancer and treatment facilities nationwide to educate them about the survivor/patient forum. Our goal is to send each hospital our web support cards to have available for new and existing patients. These cards tell them about the OCF website and information. I have had a lot of luck getting in touch with the social service departments, however, the radiation and chemo departments have been a challenge because they are so busy working with patients, they don't always have time to come to the phone to speak with me. If any of you are going back to these departments for treatments or recall visits and would be willing to take some of OCF's literature with you, please let me know and I will send you some materials for your next appointment. I can be reached at the OCF office 949.273.4400 or you can always email me, [email protected]. Thank you so much!!! | | | | | 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 | Jamie, The doctors and hospital I go to already have the brochures. I take some with me to my appointments and stock them up. A good contact person would be a nutritionist. Most OC patients end up talking with them. Everyplace I go also including my oral surgeon, ENT, family doctor, and gastro docs all have the pamphlets. Another point of contact would be HBO clinics. Both times Ive gone thru HBO, I always end up finding out about other OC patients and give them brochures. Best of luck with spreading the word. Thank you 
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: Mar 2010 Posts: 30 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2010 Posts: 30 | Thank you Christine!!! | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Jamie,
This Thursday, I will try to follow up with your contact in radiation at Fox Chase. You didn't mention to me anything about the chemo department there. Have you had any contact with them?
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Jamie - are you having much luck with MD Anderson? I am being followed in the Head and Neck Center, and up to this point have never seen any OCF brochures, etc unless I've brought them myself. The Head and Neck Center is where ALL oral cancer patients are seen and followed, so it's an obvious place to make sure they are informed. I have also repeatedly informed my surgeon, oncologist, fellows, nurses etc about OCF.
I am going this Tuesday for my 4 year follow up, let me know if there's anything I can do. Hopefully you've been able to reach them.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | Joined: Mar 2010 Posts: 30 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2010 Posts: 30 | Jerry,
No, I have not had any contact with the chemo dept. I know you have OCF brochures but do you have the web support cards? If not, I will send those to you. Thank you! | | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Jamie,
I would be happy to take web support cards to the Hospital of the University of Pennsylvania. We have an appointment there in a few weeks and I can hit Radiation Oncology, Plastic and Reconstructive Surgery, and Head and Neck Cancer.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Mar 2010 Posts: 30 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2010 Posts: 30 | Hi Anita, That would be great! Will you please send me your address so I can send you the web support cards? You can send me a PM or email me [email protected]. Thank you so much! Jamie | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Janie, you can send me the cards. My address is in the system at OCF. Make sure it's the Yardley address. Langhorne was my office and I'm retired and that address shouldn't be in the system any more.
Thanks. Jerry
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 | Hello Jamie,
I will be heading to HUP in two weeks, I still have everything but do not have any web support cards. My address is also in the system.
Take care,
Donna
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.
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