#1646 08-27-2003 02:48 PM | 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 | The Oral Cancer Foundation has been asked to help the National Cancer Institute to locate individuals who have had recent cancer experiences and would be willing to be interviewed regarding those experiences. Here is the contact information. If you fall into one of the qualifying groups, I urge you to call and offer your opinions.
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The National Cancer Institute (NCI) is developing new education materials to address concerns that people with cancer and their families face throughout the course of the disease. We need to know what you believe is important to include in these materials. We are looking for:
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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#1647 09-21-2003 03:32 PM | 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 | The NCI is still collecting information. This posting is to bring this information back to the current list again.
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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#1648 09-25-2003 10:37 AM | Joined: Apr 2002 Posts: 273 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Apr 2002 Posts: 273 | O.K. Brian, I called Monday, and they called me back today for my first focus group tomorrow! So, come on guys, this gives us a voice and a chance to maybe make some changes........Dee | | |
#1649 09-26-2003 12:25 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | I took part in a NCI focus group yesterday. I'm glad I did and hope I was helpful. Admittedly I was running on empty though. I had just gotten home from spending 15 hours in the ER with my Mom.
This post-treatment sickness thing is pissing me off. As if cancer and its' treatment isn't difficult enough. Arrgh. Brian, thanks for letting us know about these groups. I think there's a lot of good info that forum members can contribute to NCI.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#1650 09-29-2003 02:03 PM | Joined: Feb 2003 Posts: 13 Member | | Member
Joined: Feb 2003 Posts: 13 | Hi Brian - I'll be calling them tomorrow - targeting the Bereaved informal caregivers focus group. Thanks for the update. Kathy Dodge | | |
#1651 09-29-2003 05:17 PM | Joined: May 2003 Posts: 39 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2003 Posts: 39 | Brian,
I'll give them a call. I think I qualify as a current informal caregiver.
Jack
Caregiver to Eric
Squamous Cell Carcinoma, L. Tonsil
Stage 3 (T2-N1-M0)
5 Years Cancer Free Now
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#1652 09-30-2003 06:20 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Brian,
They blew me off, telling me that they had plenty of responses from stage III/IV patients already. They took my name for future panels/focus groups...
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)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#1653 09-30-2003 10:06 AM | 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 think the term "blew you off' was probably less than appropriate. I just called this afternoon to offer my help. They took my information; they said they had a lot of responses, and that this is one of many focus group issues that they will be exploring in the next 6 months. While they couldn't say if I would be one of those chosen for this particular focus group, like clinical trials, their groups are very specific in having a common background. If they took your information, they obviously didn't think that you were a nut case, and may, if not for this particular study, contact you as they develop other materials geared towards cancer patients, survivors and caregivers. As far as I was told this afternoon, they were still gathering names and information for the future groups.
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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