Welcome long-term survivors!



  • 40yearsandcounting
    40yearsandcounting Member Posts: 19 Member
    anyone here?

    Greta- wondering if anyone from this original post is still here....I have been working with others, via Facebook support groups, to organize something for long term surivors of Hodgkin's Lymphoma. Struggling with the age old issue of what is considered "long term." Can you help? was there ever any consensus on this? thanks so much.


  • Kristine1217
    Kristine1217 Member Posts: 5

    I know 2 years isn't a very long time, but hope I can join in!

    I've been NED since my surgery 22 months ago. :-)

    That's great Diane!! 2 years

    That's great Diane!! 2 years is a long time. I'm stage IV colorectal for 4 years now.


  • joet2018
    joet2018 Member Posts: 3
    edited February 2018 #84
    25 years cancer free but now....

    Hi all, I am a 56-yr-old male and this goes out to all cancer survivors. I had Hodgkin's lymphoma in the late 80s/early 90s, with surgery, radiation and chemo treatments. Then I was in remission/cure for 25 years. Last year, on the actual month of my 25th anniversary of being cancer free, a scan being done for something else turned up lymph nodes in my pelvis and abdomen. Since then, I have been monitored with scans at 6 month intervals. My latest scan was a couple of weeks ago, and showed absolutely no change, the lymph nodes, which are about one centimeter, have not gotten larger and no new ones. The oncologist has gone back and forth on recommending a biopsy, now she says we can continue to monitor. She says its either nothing, or a very slow-growing, very non-aggressive, form of lymphoma.
    I believe what they are seeing could be scar tissue or some other remnant from my previous treatment, but they can't seem to find any of my older scans from after my chemo was finished.
    This has been very stressful to me, as bad or worse than when I first went through cancer diagnosis, or when I had my recurrence of Hodgkin's 25 plus years ago. I had always thought that if I ever got cancer again, I would handle it better because of my "experience." But no, its actually worse.
    I am incredibly grateful for the 25 cancer free years, and hopeful this is just a blip. But it has been very difficult, leading to insomnia, anxiety, etc. I have felt very isolated and alone since this has been going on, even though I have wonderful family and friends. 
    I thought it might be helpful to hear from other long-term survivors about how they may have handled similar issues, or just to talk it out with others who have been through some of the same things as me.
    Sorry for the long-winded post....

  • Thanks
    I know 2 years isn't a very long time, but hope I can join in!

    I've been NED since my surgery 22 months ago. :-)

    whats NED?

    whats NED?

  • adonai shammah lumba
    adonai shammah lumba Member Posts: 6
    edited June 2018 #86
    survivor for 16 years

    i hope someone could help me understand why i have siezures. the doctor told me to go to a psychiatrist. i dont, infact i crampled the paper where the psychiatrist name was written. it too much  from cancer oncologist then  to a psyhcia? feel so bad and do no what to do. anybody who can relate wid my missery?

  • cmb
    cmb Member Posts: 980 Member

    whats NED?

    whats NED?


    NED stands for "no evidence of disease." It's the term used after treatment to indicate that no sign of cancer can be detected. NED isn't the same as being "cured" as many cancers can still recur at a later time. However the longer someone is NED, there is a greater chance for a longer-term remission.

  • jaceliz
    jaceliz Member Posts: 3
    edited September 2019 #88
    46 year Survivor of ALL

    Does anyone post here anymore? 

  • Tethys41
    Tethys41 Member Posts: 1,374 Member
    jaceliz said:

    46 year Survivor of ALL

    Does anyone post here anymore? 

    Not much

    It's pretty slow here.

  • 40yearsandcounting
    40yearsandcounting Member Posts: 19 Member

    Just putting a probe out here to see if anyone is still looking for other long-term survivors. We started a non-profit organization six years ago for long-term Hodgkin's survivors, "Hodgkin's International." Our primary focus is on educating survivors about the late effects of earlier treatment. Find us at www.hodgkinsinternational.org. We are on Facebook and Twitter too. Please join us!