#51690 09-17-2006 07:12 AM | Joined: Aug 2002 Posts: 246 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Aug 2002 Posts: 246 | Dear Caregivers and Friends at OCF: My name is Kimberly Crocker Crowther and I have been a member of OCF since 2002 when my husband, David, was diagnosed with Stage 2/3 tonsil cancer and underwent a modified radical neck dissection followed by radiation. I post under the user name "kcdc". OCF provided a source of sanity and support for me when I was stressed as Dave's caregiver and remains invaluable to me today.It is my turn to give back to OCF and the oral cancer community. I am a nurse practitioner and a doctoral student at the University of Texas Medical Branch in Galveston. Because of Dave's experience and my new awareness of the profound stress of being a caregiver of a person with oral cancer, I have decided to research this topic for my doctoral dissertation in hopes of raising awareness in the medical and nursing community so we health care providers can help caregivers better cope with the experience. Often, caregivers are the "forgotten ones" who grapple with trying to "do right" for our loved one and feeling overwhelmed and scared.Days are long and stress is high and I would like to know how this has affected you. Brian Hill has graciously agreed to allow me to post a message on this site asking fellow OCF members who are caregivers to participate and/or help in recruitment of participants to fill out anonymous survey that will take 30-40 minutes at most to complete. If you are interested in participating please send me a private e-mail with your address and I will send you a copy of the questionnaire and a self-addressed stamped envelope to return it to me. Your address will be seen only by me and destroyed once your survey is sent. Your answers to the questions will remain anonymous. You may complete the survey in the privacy of your home and return it to me. I will not contact you again regarding the study unless you would like to see a copy of the results which I will gladly share. I am grateful to any of you who are willing to help with this research.You do not need to be an OCF member to participate. You may know a caregiver who is not a member and I will gladly send him/her a survey packet. In closing, I am hoping your input will help me make a meaningful difference in the oral cancer care community and in the lives all of survivors and their caregivers who have battled and are battling this diease with love and bravery every day. I can be reached at: [email protected] or via phone at 508-785-1708 Many thanks in advance, Kimberly Crocker Crowther MS, RN, APRN, BC ("KCDC")
kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
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#51691 09-17-2006 05:33 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2005 Posts: 663 | Already sent the email!
This is a great idea and Thanks to you Brian for helping her.
I hope that whatever input we can give her will help.
Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#51692 09-18-2006 04:23 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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#51693 09-18-2006 04:28 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Kim, I have sent you 2 e-mails to ask for a questionaire. But I can't tell if they are realy going through. Can you let us know that you recieved them? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#51694 09-19-2006 05:19 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Kim, I was wondering the same. I too sent my address via email....let me know...would like to participate....Thanks, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#51695 09-19-2006 06:17 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Kim,
Hope you got my email. I aksed Charlie and he will be glad to help.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#51696 09-19-2006 09:00 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Thanks Kimberly,
I haven't been on the site for quite a while. My husband is doing relly well and our family is finally feeling stronger! i came to the site today to introduce a friend whose mother has head and neck cancer to the caretaker forum. I was so happy to see your posting! Thanks for doing the reserach. I look forwrad to helping and thanks to everyone whop helped me over and over again when John was so ill!
Lots of love,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
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#51697 09-19-2006 12:16 PM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | Hi Kim,
I am giving yoiur info to my wife. I'm sure she will be gald to participate.
Steve
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#51698 09-23-2006 05:25 AM | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2006 Posts: 101 | Kim, you and I have already talked about this at one point, just send me a questionnaire and I will gladly answer it!
Jennie B
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
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#51699 09-29-2006 12:06 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Kim ..received the package, will return in next few days.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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