How long have you survived

Silver02
Silver02 Member Posts: 14
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I came across the original post in the head and neck cancer section so I thought I'd recreate it for our lymphoma community. Let us spread positively and hope. Do share your story

«1

Comments

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited May 2021 #2
    It wiil be 10 years ..

    next October since my diagnosis. I probably had it about 2 or more years before diagnosis. I am very fortunate.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited May 2021 #3
    Twelve years since my HL

    Twelve years since my HL diagnosis, Silver.   Six years since my prostate, Stage 2.   There have not been a lot of members at this Board who have, to my knowledge, passed on, but most do leave contact after a time, so who knows.   I mostly remember DixieGirl, who had numerous relapses over more than a decade.  The most frequent writers here have been people with refractory, or relapsed disease, of which there are many.  Or their loved ones.

    The Prostate Board is very different; members dying all the time.  Organ cancers in general are much tougher than the blood cancers, and Staging matters a lot more with the various organ cancers than it does with most lymphomas.  Many, if not all, organ cancers, if they are metastatic, are definitionally uncurable, and all treatments in those cases are pallative.  PCa is like that, but with hormonal treatments, some men have lived 20 years with metastatic disease, but the average is much less.

     

  • po18guy
    po18guy Member Posts: 1,508 Member
    edited May 2021 #4
    Lucky 13 (2008-2021)

    Peripheral T-Cell Lymphoma - Not Otherwise Specified X3. Stage IV twice.

    Angioimmunoblastic T-Cell Lymphoma X1. Stage IV once.

    20q deletion Myelodysplastic syndrome X1. 26% blast cells in marrow.

    All three simultaneously in 2014-2015.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    edited May 2021 #5
    4 years and counting

    Was diagnosed February 2017 with Hodgkins and NHL and had 6 treatments of RCHOP. Relapse December 2019 and Stem Cell 2020 stil NED. Next scan is 5/13/2021.

     

  • illead
    illead Member Posts: 884 Member
    edited May 2021 #6
    10 years 7/11

    My husband has Mantle Cell almost 10 yrs now.  He has had quite a few relapses but he is now in remission again.....so on we go!

    Becky

  • lindary
    lindary Member Posts: 711 Member
    edited May 2021 #7
    7 years

    I was diagnosed December 2014 with Folicular Lymphoma. Declared NED April 2016.  I have a scan next week.

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #8
    25 years...

    ...not counting a relapse in 2018, and 2020, and probably again now.  Scan scheduled for Weds, but all signs, including return of really annoying itching, point to #4.   NLP Hodgkin's should be re-named Cockroach Hodgkin's, because it can withstand all sorts of chemical and radioactive abuse.  

    So, that leads to my question -- how many relapses have people had?   

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited May 2021 #9
    tgyphilly said:

    25 years...

    ...not counting a relapse in 2018, and 2020, and probably again now.  Scan scheduled for Weds, but all signs, including return of really annoying itching, point to #4.   NLP Hodgkin's should be re-named Cockroach Hodgkin's, because it can withstand all sorts of chemical and radioactive abuse.  

    So, that leads to my question -- how many relapses have people had?   

    Two since my first treatments. Itching of my face, especially at night, is one symptom I have come to recognize. But also fatigue and dizziness. Scans on Monday next. No palpable (by me) nodes but my onc says he can feel them.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #10
    ShadyGuy said:

    Two since my first treatments. Itching of my face, especially at night, is one symptom I have come to recognize. But also fatigue and dizziness. Scans on Monday next. No palpable (by me) nodes but my onc says he can feel them.

    Me too

    SG, I underwent my 'autoimmune scare' last year, and it still is not resolved to my satisfaction.  I have constant itching, random, all over. And horrid fatigue, as well as moderately anemic results, despite taking OTC iron.  I also have a known, but un-common symptom of lymphoma:  a burning sensation all over after having any alcohol at all.  I do not drink much, but even one beer triggers this.   I feel confident that some form of hematologic disease is going to show itself soon; there are just too many coincidences occuring.

  • illead
    illead Member Posts: 884 Member
    #11

    Bill has had 5 starting Feb '14

  • Jloolee
    Jloolee Member Posts: 1
    edited May 2021 #12
    2 years post treatment

    Hi All,

    New to this online forum but hoping to connect with other survivors. I feel like after your last treatment, there is no preparing you for living life again- what that will look like, how it will never feel like before cancer, and all around a lack of accesible means of finding and connecting with other survivors. Anyone else relate? Any good books anyone has read on life post treatment? Anyhow, i am 2 years in remission for HL. My oncologist is pretty anti-scan unless there is a concern, however I plan to push for one this Otober at my next check-up. 

  • Drevilmike
    Drevilmike Member Posts: 1 Member
    #13
    22 Years

    H have been cancer free since 1999. Hodgkins Lynphoma stage 3

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #14
    Max Former Hodgkins Stage 3 said:

    Me too

    SG, I underwent my 'autoimmune scare' last year, and it still is not resolved to my satisfaction.  I have constant itching, random, all over. And horrid fatigue, as well as moderately anemic results, despite taking OTC iron.  I also have a known, but un-common symptom of lymphoma:  a burning sensation all over after having any alcohol at all.  I do not drink much, but even one beer triggers this.   I feel confident that some form of hematologic disease is going to show itself soon; there are just too many coincidences occuring.

    Here is hoping ….

    .... you are wrong. Best of luck my friend. You are a real fighter and an inspiration to people like me. Pls continue.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #15
    ShadyGuy said:

    Here is hoping ….

    .... you are wrong. Best of luck my friend. You are a real fighter and an inspiration to people like me. Pls continue.

    SG

    We're too contrarian to ever go anywhere, my friend.....

     

  • Rocquie
    Rocquie Member Posts: 869 Member
    #16
    Living

    I was diagnosed with lymphoma 9 years ago. I have not only survived, I have LIVED. I did not come out of my treatments unscathed but I am so grateful for all my blessings. I just got home from caring for my 94-year-old Mother and this past weekend, our 11-year-old granddaughter stayed with us for a few days. I loved on and spoiled each of them as much as I possibly could. Memories were created. And so my life continues . . .

    Blessings,

    Rocquie

     

  • lindary
    lindary Member Posts: 711 Member
    edited May 2021 #17
    lindary said:

    7 years

    I was diagnosed December 2014 with Folicular Lymphoma. Declared NED April 2016.  I have a scan next week.

    update

    Last week I had my 'every 6 month' cat scan. Today I saw my oncologist and she went over the results. It was very short, no change since previous scan. So now I go on the 1 year plan and won't see her until next year.  YEAH! 

  • onlytoday
    onlytoday Member Posts: 609 Member
    edited May 2021 #18
    I was diagnosed in 2010.

    I was diagnosed in 2010.

    Marginal Zone nhl, stage 4.

    Had Rituximab and 2 years later chemo.

    In a partial remission ever since!

     

    Nice to see some familiar names here!!

  • marijoy07
    marijoy07 Member Posts: 1
    edited May 2021 #19
    Jloolee said:

    2 years post treatment

    Hi All,

    New to this online forum but hoping to connect with other survivors. I feel like after your last treatment, there is no preparing you for living life again- what that will look like, how it will never feel like before cancer, and all around a lack of accesible means of finding and connecting with other survivors. Anyone else relate? Any good books anyone has read on life post treatment? Anyhow, i am 2 years in remission for HL. My oncologist is pretty anti-scan unless there is a concern, however I plan to push for one this Otober at my next check-up. 

    Hi Jloolee! Congratulations

    Hi Jloolee! Congratulations on 2 years remission!

    I'm new to CSN too. I've had no luck finding a local cancer survivor support group so giving this a try. 

    I can related to what you said. Life after cancer has been an interesting. Understanding who I am now is my biggest challenge, even after 2.5 years of remission. I don't have any books for recommendation, but I have picked up some hobbies. They help calm me. What kind of struggles are you facing?

    Hope to connect with you and/or others here. 

  • poppymann
    poppymann Member Posts: 1
    edited May 2021 #20
    38 Years

    Hodgkins Lymphoma Stage IIB. 

    C-MOPP 

    3.4gys of bunch of mantle radiation 

    No recurrences, but a ton of after effects. 

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #21
    lindary said:

    update

    Last week I had my 'every 6 month' cat scan. Today I saw my oncologist and she went over the results. It was very short, no change since previous scan. So now I go on the 1 year plan and won't see her until next year.  YEAH! 

    One year

    I am so happy for you. It always feels good when we get to extend those visits out.

Discussion Boards