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  • Suggestion Box

    It has been a while since we've asked, so I thought this was a good time to ask again...

    Do you have suggestions to improve things around here, or are you perfectly happy with things as they are? Is it easy enough to decide where to make a post, or would you suggest other forum names and descriptions?

    Any feedback is encouraged!
    Scott, scott@tc-cancer.com
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


    Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

  • #2
    2k

    If I'm not mistaken, this was you post no. 2000 Scott.
    A tremendous effort, that cannot be acknowledged enough.
    Thank you.

    Jens
    Embryonal carcinoma, stage II,
    3 x BEP, apr - june 2005
    Surveillance

    Comment


    • #3
      Well, if you must ask

      Scott,

      I was just thinking of this yesterday. Maybe it would be nice to have stats on how long members have been free from Cancer and maybe some kind of way to chart this. I have a feeling that many members stray from the forum after they are cured. Also, I would like to encourage them to stay tuned in to the forum, and give feedback to others in need of advice. I know that many already do this, but just a reminder of how important this is to the ones that dont. Thanks Scott.
      Diagnosed 7/5/05, Rt. I/O 7/29/05, Nonseminoma Stage IIa, Started 3XBEP 9/06/05 changed to 4XEP due to reaction from Bleomycin. Currently surveillance.

      Comment


      • #4
        Would it be possible to do a cleansing of the Member list as 70% of the names listed no longer post or became members to ask 3-5 questions and then they never post again. I know this would not be a popular idea but the site should consider initiating a member fee(even if it is a little as $1.99 per year) just to keep tire kickers from joining. If some one joins I would like to see them bringing some relevance to the table and maybe the money collected could go to LAF or american cancer society as a donation from our web-site!! WHAT DO YOU THINK????

        Sorry I haven,t benn posting to much-- Been a little busy with the relocation efforts and I have finally gone back to work(only 20-25 hrs a week but it,s a start)!!!!!!!!
        Moffitt Cancer Institute
        CANCER SUCKS
        Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal Tumor@ 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

        Comment


        • #5
          Originally posted by yvonne
          Would it be possible to do a cleansing of the Member list as 70% of the names listed no longer post or became members to ask 3-5 questions and then they never post again.
          I just cleaned things up a little for now by deleting usernames that had no posts if they were a) registered but hadn't visited in over a year, b) still waiting for e-mail confirmation and more than 60 days old.
          Scott, scott@tc-cancer.com
          right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


          Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

          Comment


          • #6
            Originally posted by Larry B.
            Maybe it would be nice to have stats on how long members have been free from Cancer and maybe some kind of way to chart this.
            Larry, this may not be exactly what you had in mind, but I'm interested in feedback on whether this will be helpful. I just added optional fields to the member profile: Cancer Status, Diagnosis Year, Stage, and Treatment. Please let me know if you would add to or change any of the available choices.
            Last edited by Scott; 12-10-05, 09:02 AM.
            Scott, scott@tc-cancer.com
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


            Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

            Comment


            • #7
              Originally posted by yvonne
              Would it be possible to do a cleansing of the Member list as 70% of the names listed no longer post or became members to ask 3-5 questions and then they never post again.
              The forum software can require a minimum number of posts before displaying a user in the Members List. I increased it from 0 to 3 this morning.
              Scott, scott@tc-cancer.com
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


              Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

              Comment


              • #8
                How about User Titles? Should we branch out from Registered User? I believe at one time titles automatically changed with number of posts through Newbie, Junior Member, Full Member, Senior Member. Or we could use Survivor, Caregiver, etc.
                Last edited by Scott; 12-10-05, 03:53 PM.
                Scott, scott@tc-cancer.com
                right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

                Comment


                • #9
                  Scott

                  Scott,
                  I like the additional fields idea. I think that would be helpfull. As far as charging for use of the forum, I would think that may have a negative impact for some. I would not want to deter anyone from seeking support in any way. There are some people that would not go thru with paying for it and giving personal information out. I just want some kind of way of getting the point accross of how much help survivors can give if they stay active after they get on with there normal lives. I dont mean reading post or posting everyday, just staying in touch and helping others would be of great value. Maybe a "joining forum policy with a agree - dissagree option stating that by joining you would be stating that you would actively become a member and provide feedback to the other members" Something on that line.
                  Diagnosed 7/5/05, Rt. I/O 7/29/05, Nonseminoma Stage IIa, Started 3XBEP 9/06/05 changed to 4XEP due to reaction from Bleomycin. Currently surveillance.

                  Comment


                  • #10
                    Those extra fields really could be useful, if enough members update their profiles, starting by clicking the "User CP" and then the "Edit Profile" links, or just click here!

                    Please let me know if the choices need adjusting.
                    Last edited by Scott; 12-12-05, 07:43 PM.
                    Scott, scott@tc-cancer.com
                    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                    Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

                    Comment


                    • #11
                      Originally posted by Scott
                      How about User Titles? Should we branch out from Registered User? I believe at one time titles automatically changed with number of posts through Newbie, Junior Member, Full Member, Senior Member. Or we could use Survivor, Caregiver, etc.
                      This is an interesting idea. Mybe it is time to slightly separate those with one post/year and regular users.
                      Seminoma I. stage ,May 2004,Si Deus pro nobis quis contra nos

                      Comment


                      • #12
                        Scott:
                        I can't keep track of who has upcomming chemo or an RPLND. Is it possible to have those as calendar items so I know who needs good karama and when.
                        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                        Comment


                        • #13
                          On the treatment user options, the staging could be a bit confusing for newbies given the way the choices are laid out. For example, if you judge staging purely by metastasis, then I was stage II (lymph nodes). But if you go by the AJCC groupings, I was stage IIIC due to high AFP levels. It's a minor quibble, but a quibble nonetheless. I also understand the need to keep it fairly simple.

                          Other statistics suggestions:

                          - high water marks for tumor markers (pick list)
                          - additional treatment options (for those of us who had 4xBEP)
                          - pathology (could get somewhat involved)
                          - seminoma/nonseminoma/teratoma
                          Vinny (aka Frank)
                          http://vinnysgotcancer.blogspot.com

                          left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
                          4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
                          VATS resection of teratoma from left lung 4/26/06
                          Presently surveilling

                          Comment


                          • #14
                            Additional dates to track

                            Scott, does the forum have the ability to track other specific dates? Users could put in their profile when they were diagnosed, when chemo started, when RPLND happened, when they got the "all-clear" and these would appear on the calendar so we could celebrate people's anniversaries.
                            Vinny (aka Frank)
                            http://vinnysgotcancer.blogspot.com

                            left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
                            4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
                            VATS resection of teratoma from left lung 4/26/06
                            Presently surveilling

                            Comment


                            • #15
                              I took care of the easy suggestion right away and added 4xBEP as a treatment choice. What do others think about tracking the AJCC groupings? Is it helpful or too detailed?
                              Scott, scott@tc-cancer.com
                              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                              Your donation funds LIVESTRONG Foundation services for people facing cancer now. Please join me!

                              Comment

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