How long have you survived with a recurrence

robinleigh
robinleigh Member Posts: 297
in Head and Neck Cancer #1
Would this be a helpful discussion to start?
«1

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    A Great Help
    I think this would be an excellent discussion. I'm really hoping I remain unable to share personal experiences on the topic. I also think a lot of us would be interested to hear of others' experiences.
  • robinleigh
    robinleigh Member Posts: 297
    #3
    Pam M said:

    A Great Help
    I think this would be an excellent discussion. I'm really hoping I remain unable to share personal experiences on the topic. I also think a lot of us would be interested to hear of others' experiences.

    Maybe
    A scary topic but that is the reality for us. I am on another site that addresses metastatic disease. I hope that none of you have to experience it but I know many here have shared that they are not considering themselves a statistic and thought a "sub-group" in this regard would be encouraging. I hesitate to add my husband to the thread for "how long have you survived?" because he is not NED. No biggie...I still know he is battling this cancer but it does put you in quite a smaller population. Happy to be here today celebrating our 31st anniversary in good form. Visit with friends, movie, dinner with friends! Big dog chemo treatment tomorrow but today was awesome!
    Robinleigh
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Robin

    Between my first treatment, second treatment and ops for nothing on the third that will make a little over 6 years, I am on my way tomorrow to MD Anderson for another PET to see if anything changed.

    Take care
    Hondo
  • robinleigh
    robinleigh Member Posts: 297
    #5
    Hondo said:

    Hi Robin

    Between my first treatment, second treatment and ops for nothing on the third that will make a little over 6 years, I am on my way tomorrow to MD Anderson for another PET to see if anything changed.

    Take care
    Hondo

    So hondo?
    From what point can we declare being a survivor? Date of finding out? Date of ending first treatment? Not yet?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    robinleigh said:

    Maybe
    A scary topic but that is the reality for us. I am on another site that addresses metastatic disease. I hope that none of you have to experience it but I know many here have shared that they are not considering themselves a statistic and thought a "sub-group" in this regard would be encouraging. I hesitate to add my husband to the thread for "how long have you survived?" because he is not NED. No biggie...I still know he is battling this cancer but it does put you in quite a smaller population. Happy to be here today celebrating our 31st anniversary in good form. Visit with friends, movie, dinner with friends! Big dog chemo treatment tomorrow but today was awesome!
    Robinleigh

    Survivor
    NED is nice, but don't hesitate to add him to that board.....he is a survivor. Hoping all goes well with the chemo cocktail tomorrow.

    Tim, good luck on your scans tomorrow buddy...

    Your in my thoughts and prayers,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    robinleigh said:

    So hondo?
    From what point can we declare being a survivor? Date of finding out? Date of ending first treatment? Not yet?

    Dates
    Many use different dates...some the Dx date, others post Tx date.

    I always just reference mine as being post treatment.

    But as long as you have your feet above ground, I presume you could be referred to as a survivor.

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    Skiffin16 said:

    Dates
    Many use different dates...some the Dx date, others post Tx date.

    I always just reference mine as being post treatment.

    But as long as you have your feet above ground, I presume you could be referred to as a survivor.

    Best,
    John

    Robinleigh
    The name of the thread is, "How long have you survived?" Not, how long have you been NED. I have never had anyone give me an all clear. I've not had any scans since my rads ended on 5/15/09. I have survived though.

    Honestly, in my mind, I count the 'how long have you survived?' from the day I found my lump in my neck, which was cancer. That was on 10/09/09. It will be three years.
  • robinleigh
    robinleigh Member Posts: 297
    #9
    sweetblood22 said:

    Robinleigh
    The name of the thread is, "How long have you survived?" Not, how long have you been NED. I have never had anyone give me an all clear. I've not had any scans since my rads ended on 5/15/09. I have survived though.

    Honestly, in my mind, I count the 'how long have you survived?' from the day I found my lump in my neck, which was cancer. That was on 10/09/09. It will be three years.

    Yay
    Well, naturally, I would like to start our count from the date of Andy's diagnosis! It just seems to make me feel better. When I shared this thread with him he says he just wants a good report after this treatment cycle which is in about three weeks. First grandchild due at the same time. That seems a bit cruel. Hopefully, we will have two things to celebrate!
    I am going to post on " how long have you survived?" very soon. Thanks for helping me realize that Andy belongs there!
    Appreciate your replies and wisdom greatly,
    Robinleigh
  • Pam M
    Pam M Member Posts: 2,196
    #10
    robinleigh said:

    Maybe
    A scary topic but that is the reality for us. I am on another site that addresses metastatic disease. I hope that none of you have to experience it but I know many here have shared that they are not considering themselves a statistic and thought a "sub-group" in this regard would be encouraging. I hesitate to add my husband to the thread for "how long have you survived?" because he is not NED. No biggie...I still know he is battling this cancer but it does put you in quite a smaller population. Happy to be here today celebrating our 31st anniversary in good form. Visit with friends, movie, dinner with friends! Big dog chemo treatment tomorrow but today was awesome!
    Robinleigh

    Happy Anniversary!
    Sounds great. And glad to hear that you'll be contributing to the "how long have you survived?" post. I counted myself as a survivor before I had clean scans. Hoping for great news (in more ways than one) in three weeks.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Skiffin16 said:

    Survivor
    NED is nice, but don't hesitate to add him to that board.....he is a survivor. Hoping all goes well with the chemo cocktail tomorrow.

    Tim, good luck on your scans tomorrow buddy...

    Your in my thoughts and prayers,
    John

    Tomorrow
    Will be leaving Lafayette at 5am headed to Houston for a 10am scan

    Thanks for the prayer
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    robinleigh said:

    So hondo?
    From what point can we declare being a survivor? Date of finding out? Date of ending first treatment? Not yet?

    Survivor:

    Robin the answer to the question is in what are we surviving, the Cancer or the Treatment? To me I became a survivor the day I had a plan and started to fight my cancer. The fight has never stopped it is still an on going process through the rest of my live to stay cancer free.

    Thnaks
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    sweetblood22 said:

    Robinleigh
    The name of the thread is, "How long have you survived?" Not, how long have you been NED. I have never had anyone give me an all clear. I've not had any scans since my rads ended on 5/15/09. I have survived though.

    Honestly, in my mind, I count the 'how long have you survived?' from the day I found my lump in my neck, which was cancer. That was on 10/09/09. It will be three years.

    Sweet

    I believe we have the same doctor as I too in the passed 9 years had only one NED all the rest were hot spots or I see something I am not sure. So here I go again tomorrow for yet another PET, let’s see what this one says.

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    sweetblood22 said:

    Robinleigh
    The name of the thread is, "How long have you survived?" Not, how long have you been NED. I have never had anyone give me an all clear. I've not had any scans since my rads ended on 5/15/09. I have survived though.

    Honestly, in my mind, I count the 'how long have you survived?' from the day I found my lump in my neck, which was cancer. That was on 10/09/09. It will be three years.

    Dawn ~ Silly Girl....
    Aren't you sure it wasn't October 2008....

    HEHE,
    Love ya...~JG
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #15
    Hondo said:

    Tomorrow
    Will be leaving Lafayette at 5am headed to Houston for a 10am scan

    Thanks for the prayer
    Hondo

    Hondo
    Prayers to you Hondo. I'm glad to see you are still doing well. :)

    Donna
  • Pam M
    Pam M Member Posts: 2,196
    #16
    Hondo said:

    Tomorrow
    Will be leaving Lafayette at 5am headed to Houston for a 10am scan

    Thanks for the prayer
    Hondo

    Hoping for a Good Scan, Hondo
    Nothing like PROOF.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #17
    sweetblood22 said:

    Robinleigh
    The name of the thread is, "How long have you survived?" Not, how long have you been NED. I have never had anyone give me an all clear. I've not had any scans since my rads ended on 5/15/09. I have survived though.

    Honestly, in my mind, I count the 'how long have you survived?' from the day I found my lump in my neck, which was cancer. That was on 10/09/09. It will be three years.

    Oops
    Won't let me edit. 10/9/08 was the day I found my lump.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #18
    good discussion
    How long haave you survived WITH A RECURRENCE? Was the question and somehow it became just How long have you survived? Which has been discussed several times and is also a good discussion to have periodically for new members. However, I think this is a different discussion that would be helpful. I believe you and Hondo are the only ones I have read about who have survived a recurrence and I am sure many more are out there.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    jim and i said:

    good discussion
    How long haave you survived WITH A RECURRENCE? Was the question and somehow it became just How long have you survived? Which has been discussed several times and is also a good discussion to have periodically for new members. However, I think this is a different discussion that would be helpful. I believe you and Hondo are the only ones I have read about who have survived a recurrence and I am sure many more are out there.

    SideTracked
    LOL, actually it got a little side tracked by the original poster whom also made reference to not posting on the "How long have you survived..." topic also going on because nobody said her husband was NED yet.....and she also asked at what point do you consider yourself a survivor....the post evolved, LOL...you gotta keep up. :)

    You are correct, there are many on here that are still surviving and have had recurrences.

    JG
  • jim and i
    jim and i Member Posts: 1,788 Member
    #20
    Skiffin16 said:

    SideTracked
    LOL, actually it got a little side tracked by the original poster whom also made reference to not posting on the "How long have you survived..." topic also going on because nobody said her husband was NED yet.....and she also asked at what point do you consider yourself a survivor....the post evolved, LOL...you gotta keep up. :)

    You are correct, there are many on here that are still surviving and have had recurrences.

    JG

    Yeah, I am easily side
    Yeah, I am easily side tracked too. Went to put soap in wash at 10:30 am, still haven't done it. LOL
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #21
    Skiffin16 said:

    SideTracked
    LOL, actually it got a little side tracked by the original poster whom also made reference to not posting on the "How long have you survived..." topic also going on because nobody said her husband was NED yet.....and she also asked at what point do you consider yourself a survivor....the post evolved, LOL...you gotta keep up. :)

    You are correct, there are many on here that are still surviving and have had recurrences.

    JG

    Side tracked.
    Hey..... She "side tracked" her own thread. Was just answering her questions. Lol :D

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