#5925 08-21-2005 02:27 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Shawna,
If you click on the small "directory" link above and then click on "search members" without putting in any criteria, you will get a complete list of everyone that ever joined the forum.
I did this once and you will be surprised how many members have only one or no posts. This is where the number of members is really misleading.
There are many members that read all the posts, but only contribute once in awhile. Their experiences may only pertain to some of the subjects. I sure hope to be around a long time and continue to contribute whenever I can share my expertise or experiences.
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"
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#5926 08-21-2005 02:52 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Shawna,
There's another whole population of survivors out there who "moved on" with life long before this site existed -- in fact, before the internet existed. My treatment was finished 16 years ago and the only reason I happened on this site last year was because two people I knew had just been diagnosed with oral cancer and I was looking for some up-to-date information that might help them. If someone went through this battle a number of years ago and hasn't had a reason to worry about it since then, chances are you won't find them here.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#5927 08-21-2005 04:52 PM | Joined: Mar 2002 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2002 Posts: 45 | Shawna,
I'm a member from the very beginning that reads often and posts infrequently. So, while I'm not always an active poster, I do check in with a comment now and again. In my case, I had only surgery (no radiation or chemo) and did not have a neck dissection, so I don't share the same treatments with many posters here.
In your case, your dad and I have the same Dr. so I am well aware of the treatment environment he is in, so I have posted in response to you several times.
With the efforts of Brian and OCF hopefully cases like mine become the common outcome of oral cancer, early detection by a dental professional of a curable disease if treated early and aggressively.
Again, best of luck to you and your father!
Stage I diagnosed 9/18/2000
Dave
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#5928 08-21-2005 05:55 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | When I first found the board I felt the same way. It seemed like so many members but so many not posting.....made me think they had all died. Then I started looking and found that a massive number of people sign up but never post, or might post once. Multiple names for the same person, etc.
There are plenty of long term survivors out there. I intend to be here for many, many years to come.
Minnie
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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#5929 08-21-2005 08:19 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | I do read quite often, but don't always post. I'm a little over a year out from end of treatment & life is good & movin' along. I'm healthy & strong & cancer free today! Been really busy with a major remodel of my own house & I am doing all of the work by myself! The phase I'm in now is replacing all of the old aluminum frame windows with shiny new vinyl low-e windows. I'm adding a couple of new sliding glass doors in new locations. I've had quite the learning curve since I have not done window work before! This whole project is just one example of how I live my life now. Freakin' go for it! I figure if I can survive the treatment I can do anything else I put my mind to! Erik
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#5930 08-22-2005 12:06 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Many of us also have a close friend, or family member who posted while we were in hospital, my brother did so for me, maybe 6 posts, so that explains away some more..
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#5931 08-22-2005 05:49 AM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | That's an interesting question, Shawna. I've often wondered about the same thing. I can't speak for others, but in my case, as a caregiver/member, I am guilty of burn out... and trying to catch up with things that I've fallen behind on. After taking mom to a couple of doctor appointments today, I'll come home and start working on collecting the information I need to file my taxes for last year. I hope to return to the forum with helpful posts once I get my head on straight.
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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#5932 08-22-2005 06:41 AM | Joined: Feb 2004 Posts: 40 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 40 | I lurked a lot during treatment. Posted a few after treatment. Now a 2 yr survivor I guess I
Dig.7/03 3cm+ lymph nodes & base of tongue tumor. Radical neck dissection w/removal of one neck muscle, laser removal of tumor. 47 sessions of radiation, 2 doses of Cisplatin & PEG tube 40yrs old non-smoker/drinker
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#5933 08-22-2005 08:16 AM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Hooray!!!! I feel so happy!
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#5934 08-22-2005 10:47 AM | Joined: Mar 2005 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2005 Posts: 35 | Im here and dont plan on leaving for a LONG time
Bob Grey | | |
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