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Joined: Sep 2010
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JDR Offline OP
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I have been reading a lot on these boards and follow certain posters that are good about posting details of their treatments... Well some of these posts go back many years and the posters seem to have had successful outcomes, but haven't been around.. I am DYING for updates! I know this is normal that once things are good again, many don't have a need to come back.. but would it be OK if I just sent a private note to the posters to ask for an update on their lives??


Last edited by JDR; 10-30-2010 08:29 PM.

CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)

Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
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sometimes live and responsibilities catch up with you and all of a sudden there "appears" to be no more time. ...

M








Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I remember you, Markus! Aren't you the one who had that really neat avatar with the penguins? You're right about life and responsibilities catching up. And JDR - I think it's true that once things are good again, the need to come back gets replaced by other things. I was away for quite a while and came back recently when my son was scheduled for a CT scan and I felt a little bit like people who only talk to God when there is a problem. Well, I did that, ( talked to God) but I felt I could get quicker answers from the OCF friends and I did! I am sticking around now, even though my experience as a CG is not too recent anymore, so I can see how everyone is doing and in case I might be able to add something useful. I would think that sending a private note would be fine or maybe email if there is one listed for the person. A PM may not be seen if the person is not currently posting, though.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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JDR

IMO no problem with sending a PM although as Anne Marie noted, posters on sabbatical wouldn't read it). If their profile has a private email, you could also use that since the poster has chosen to let that information be active and available to the public.
I like to think that such posters have recovered so much from this terrible cancer that it's more a bad memory than a chronic illness. I don't post as often as I used to primarily because some responses are better off as positive success stories. I don't want to bum people out when they ask about recovering from TX and/or dreading a recurrence when a lump or symptom reappears. On the other hand, I feel it's comforting for some posters to be able to compare their recovery very favorably to mine. More importantly, I continue to post so that new OCF members can realize that even if their worse nightmare comes true and the cancer does come back after TX when they thought it was all gone, that life can still be good.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I think it takes a special kind of person to be here posting several years after successful treatments (we all know why the less than successful ones are not posting any more). The cancer experience changes people profoundly. Some of it is actually for the positive, but for some the negative outweighs that. The fear involved in it all, the uncertain which is unsettling, the pain. All that they would like to forget about, and the idea of it coming back can be over powering for some. So they decide to stay away from the thoughts and memories of it as much as possible. That also means stay away from these boards and the bad news they too often hold.

I don't think this is abnormal in people. I wish that it were not so, since they are a wealth of knowledge to share with others, especially the many newbies that come. Many old posters tire of offering up the same answers over and over again. Gary told me that was why he had been absent after many years of posting, and I understand. I quit teaching basic flying for this very reason.

Posters are also the life blood of OCF's financial ability to even exist. 70% of all funds that come into OCF, come from people directly associated with the disease or their families. They are the foundation's core donors. When they get the "I want this so far behind me that it's not even in my rear view mirror" perspective, besides not being here to write, they are also not around for the foundation as donors, not even once a year at Xmas. We really have no major corporate sponsors that we can count on. Sure, we get donations of sponsorship of $500 or $1000 from J&J and a couple others at a walk event once in awhile, but not the 6 figure sums that they give to the big charities.

Bottom line we don't like to dwell on things negative. Life goes on, hopefully richly - people thrive again and do not need the help these boards offer. But you can also look here and see the friends made that stay in touch, sometimes not through the boards, and those that stay with the foundation that saw them through the questions and uncertainty. People here will show up for walk events to meet with each other. For many posters with original post dates that go back years, this is a place of family.

I don't say it enough but to all those that continue to support others long after their trials are over, that offer up the sage advice to help make good decisions, that listen to the fear and lend their words of courage, all of you are the "soul" of OCF. Without out you, much of what OCF is - becomes nothing more than web pages and software, and a couple of challengers out in the field tilting at windmills in Washington DC, and lecturing at universities so the next generation of dentists and doctors will not miss the opportunities they have to catch things early or head this off completely.....


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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I think putting email addresses are for people to use. Go for it. JDR I get many emails and always reply and enjoy the ones I get.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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[quote=debandbill]uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.

Deb [/quote]Deb,

This is true when you go to "My Stuff" and then "Preferences" and choose "yes" to the following question:
"Do you want to be notified via email when you receive a private message? __Yes __No"
If the member did not answer "yes", then the PM stays unseen in the forum mail until the user logs in and reads it.


JDR,

You said ironically, I feel, "I am DYING for updates!"
Please realize we have lost many good people to this cancer, and many of their outcomes will never be known by those of us who have followed, cared about and participated in their lives through these boards. Their contributions live on in their words of struggle, humor and advice; words which have helped countless others.

I like to think that because I have vicariously known them, I have become a stronger and more compassionate person.

On this "All Hallows' Eve", I find comfort in having been touched by those who have gone before me. And...
Thanks to all of my OCF family!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
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Thanks RPCV! Now I know why I did not get an email notification re a PM. I just changed it on "my stuff" so now I'm cool!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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"OCF across the pond"
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I liken it to family that have moved away .You promise to stay in touch,and for a while you do but then life takes over and you move on.
I left because my bereavment councillor told me i had to step back.When you come back after a while,you don't know people and they don't know you,and although i log in every day i only post on familiar names threads.I also feel concsious of Robs poor outcome in my signature line could frighten new members.I have always been happy to reply to private messages from anyone who needs my help and i always will,its the very least i can do after the support i got,and i keep up with all the old faces on face book without it having to be about cancer.

And of course there is always the island....


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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