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Welcome long-term survivors!

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Comments

  • bluerose
    bluerose Member Posts: 1,104
    kdwers said:

    I wanted to say thanks for
    I wanted to say thanks for posting~ This is what I am looking for in a "long term" survivor board. We need hope, that survivors really do exsist! Statistics aren't always on our side, real stories are! Thank you!

    Hey kd
    I am another long term survivor, of 23 years, that does exist. lol. There are many of us out there so they say. Yay for our team. lol.

    I'm just sayin. Hope that's not considered 'gloating'. lol. Couldn't help but getting that in once more. (see Ron's post here).

    All the best, keep on truckin.

    Blessings,

    Bluerose
  • bluerose
    bluerose Member Posts: 1,104
    cathyp said:

    What do you all see as the
    What do you all see as the purpose of this board vs the "long term effects board"? Is that board for the physical aspect and this board for the mental? Just wondering!!
    Cathy
    21 years, Recurring Hodgkins Lymphoma
    3 years, Invasive Ductal Carcinoma

    Do any long term survivors have tender spots on their body?
    I have developed tender spots that are at first painful all on their own, kind of like 10 bruises - one on top of the other. Then after a couple of months they don't hurt all the time on their own but instead you can't put anything on them - one leg on top of the other in bed where the pain spot is, and sometimes you can't even touch the skin without it hurting as if you have hit a bruised area hard.

    I have had xrays of these spots that are on my right leg mostly, just got ultrasound results back and of course showed nothing (as many of us have experienced when trying to get answers about other medical issues no doubt related to treatments of years gone by). Anywho next step is a neurlogist (about time) and I am sure they will find it's all nerve damage from all the transplant treatments I had. I have been diagnosed with fibromyalgia which it also could be, nerve damage and fibro - pretty closely related in my mind in many ways.

    Have any of you long term survivors experienced this kind of pain spots? The number of these things seems to be growing and it's kind of freaking me out.

    Does this sound familiar to anyone? Thanks for reading this.

    Blessings,

    Bluerose
    23 year cancer survivor - NHL
    Autologus bone marrow transplant in 1991 on recurrance, previously CHOP and localized body rads to abdomen and pelvis, total body rads in 1991 with transplant.
    Multiple side effects from treatments to date.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    bluerose said:

    Hey Phill
    Are you talking about your developing cancer cause if you are I kind of disagree to a point with the post here, in some ways it is kind of like getting mugged.

    I mean mugging comes out of the blue without warning - so do many cancer diagnosis. Muggings often produce painful injuries - so do many cancer treatments.
    Muggings cause mental traumas for many - so does cancer.
    Muggings are brutal - so are many cancer treatments.
    Muggings leave scars - so does cancer.

    I could go on so sometimes, actually, in my not so positive days, I do kind of feel as if I have been mugged by cancer.

    Just my little humble opinion.

    All the best,

    Bluerose

    Tornado without warning
    And I got hit by a tornado!
  • Ern
    Ern Member Posts: 9
    Lily50 said:

    Hi Marcia
    Thanks for responding. It is nice to hear that others feel the same way that I do sometimes.

    I too try and push to do something fun but then I feel guilty about being selfish when others are experiencing such pain. I guess that is part of survivors remorse.

    I do laugh and it makes me feel better too.

    Thanks again!
    Lily

    Lily, All
    There are very few arenas where you can discuss this experience and really be heard. I am greatful for this sort of board because often I can see where I have been, and where I am going, through the eyes of all of you. I take with me many things ranging from wisdom, strength, hope, fear,you name it. I been the club for some 38 years now, surviving an acute bout of a "poorly undifferentiated metastic process" that ravaged my lungs and lymph nodes. I was not supposed to make six months. I was not supposed to have kids either. At this point the "red devil" and its long term after effects are starting to rear up. I have accecpted my survivorship has been fate to some degree. I am not a particulerly smart, good looking, talented, strong,or affluent person. Nor do I think that in this life I will make history somehow. But for some reason I have made it thus far and I am doing as best I can with it and the time I have left. Through it all, now matter how you feel about your situation, what else can you do? Lily, I for one have been where you are walking now as many here. Be gentle with yourself. Much has happened to you so fast and furious. You may have to mourn the old you before the new one can fully emerge. Hope this helps, All the best to you.
  • Ern
    Ern Member Posts: 9
    Ern said:

    Lily, All
    There are very few arenas where you can discuss this experience and really be heard. I am greatful for this sort of board because often I can see where I have been, and where I am going, through the eyes of all of you. I take with me many things ranging from wisdom, strength, hope, fear,you name it. I been the club for some 38 years now, surviving an acute bout of a "poorly undifferentiated metastic process" that ravaged my lungs and lymph nodes. I was not supposed to make six months. I was not supposed to have kids either. At this point the "red devil" and its long term after effects are starting to rear up. I have accecpted my survivorship has been fate to some degree. I am not a particulerly smart, good looking, talented, strong,or affluent person. Nor do I think that in this life I will make history somehow. But for some reason I have made it thus far and I am doing as best I can with it and the time I have left. Through it all, now matter how you feel about your situation, what else can you do? Lily, I for one have been where you are walking now as many here. Be gentle with yourself. Much has happened to you so fast and furious. You may have to mourn the old you before the new one can fully emerge. Hope this helps, All the best to you.

    OOps, I mean a 34 year
    OOps, I mean a 34 year survivor!
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    Hi to all long term survivors
    Hi all I am long term survivor of Neuroblastoma. I was diagnosed when I was 13 months old. I am 32 years of age now and will celebrate my 33rd Feb 5th. I am here to support survivors of all ages. All the best to everyone here.
  • reddar7
    reddar7 Member Posts: 4
    Sundanceh said:

    Congratulations!
    I'm sure this will be a tremendous success and cover so many types of cancer. I hope that all goes well.

    Congrats, Lisa for getting this new forum started up and thanks to CSN for making it happen.

    Not sure how I fit in anywhere...I'm 6 1 /2 years into my cancer journey, but still actively fighting...I'm a survivor and over 5 years. I'll be checking it out and look forward to contributing if I have something to offer.

    -Craig

    you fit in very well
    6 and 1/2 years is very good. You are the one we want to talk to. You a senior survivor. I would like to know your story. Mostly we would like to hear what you were treated with.
    as it seems to have worked better than most everyone else. When it comes to small cell lung cancer, 5 year survivors are like 2 percent.
  • jteeter45
    jteeter45 Member Posts: 3
    dubc said:

    38 years this month
    I've just started posting about my childhood battle with Medulloblastoma. I'm now forty and have been cancer free. Hope everyone is doing well. I have had some long term issues to deal with from the radiation treatments I received. Hope to talk about it more.

    Radiation got me too!
    Hi dubc,
    My throat surgery was in 1994. Surgeons did a wonderful job! The follow-on radiation was long term and very intense. In 2004 started having perpheral pain in face neck and shoulder. Really struggled- nearly sucidal - until had a Medtronic neurostimulator implant. Life saver! Using Lyrica as a pain supplement, also very effective. Six months ago I lost nerve response in my throat - swallowing muscles work but my throat doesn't know food is coming -> straight to the lungs. So now I have a PEG tube in my stomach. Feeding Jevity 1.5 five times per day. Weight is stable, energy level is good - execising 1 hr. 2.5 miles most every day. Trying to stay busy with volunteer work and my writing. I've got a new fiction story out that sneaks in stuff about pain management and PEG tube inside a story about a musician. Hoping I get some readers. I'd give away the e-book: 'It's Me again, Lord" to anyone in this group who wants to read it! It would help me to see if fellow long-termers find my attempts at showing that us survivors still lead pretty active lives!
    Regards,
    Jack
  • Kimmies2
    Kimmies2 Member Posts: 2
    hi

    to be positive. iam still here 32 years later. a real survivor.

    this wil be helping

    begin youre day with a dance... begin youre day with a smile..  (its a dutch song and gives you a smile to begin)

     

  • Gray Hair Gypsy
    Gray Hair Gypsy Member Posts: 5
    What bugs me!

    I was diagnosed with Ovarian cacner in 2001 and am very open when speaking about it. I figure if it helps, in some small, some one else who may be facing  a serious illness great. What bugs me is when I tell some one how long ago it was they say, "I'm sorry " instead of, "Thats great!" I know it is just an auto responce, but hey, they have nothing to be sorry about, they should be happy for me. And I am certainly not sorry about being around 11 1/2 years after my original diagnosis! M

     

     

  • Gray Hair Gypsy
    Gray Hair Gypsy Member Posts: 5
    Sometimes it hard for others to understand

    Sometimes it hard for anyone who has not had cancer to understand what it took get you through it. It is  a long scary road you can only travel alone. When I told my co-workers my Dr. said I had 18 month to 2 years to live they asked how I dealt with that, what would I do. I asked them what they would do if  someone would tell them they could  have a fatel car accident on the freeway with in the next 18 months. To a one they replied that they wouldn't worry about it, but just get up every day and deal with what came their way. And I said, so thats what I intended on doing also. 

    And even though I am still here after 11 1/2 years I still secretly worry and can't sleep good when I go for a CA125 test or a mamag0ram. and don't breath a sigh until I get the test results back. And I know considering all the cancer in our family it may rear its ugly self again. But until then I am going to enjoy every cold, rainy, gray day sent my way. And not feel guilty about any of them. We did not come into this world with any guarrantee and no set exspiration date. If we do have one only the good lord knows it and he isn't telling. So I think we need to enjoy the time we have on earth to the best of our ability. And that will be different for reach of us.and thats OK. M

     

     

  • khsherwood
    khsherwood Member Posts: 33
    RE said:

    Suvivorship
    I have been surviving cancer since Oct 19 1997, a date that is bored into my mind. I was cancer free until Feb 14, 2007 (yes Valentines day) when it returned for a curtain call. I have now been cancer free for three years...YEAH! I have survived bc three times, I'm hoping third times the charm or perhaps three strikes and cancer's out!

    (¯`•.•´¯) (¯`•.•´¯)
    *`•.¸(¯`•.•´¯)¸.•´ ♥
    ☆ º ♥ `•.¸.•´ ♥ º ☆.¸¸.•´¯`♥RE

    Maine?

    Hi RE, I am a long time (14 years) survivor of Breast Cancer and almost a long time (4 years) survivor of Ovarian cancer.

    I am from Maine and am I wrong ? Or are you standing in the L L Bean store in Freeport? Kelly

  • ael111
    ael111 Member Posts: 4

    Sometimes it hard for others to understand

    Sometimes it hard for anyone who has not had cancer to understand what it took get you through it. It is  a long scary road you can only travel alone. When I told my co-workers my Dr. said I had 18 month to 2 years to live they asked how I dealt with that, what would I do. I asked them what they would do if  someone would tell them they could  have a fatel car accident on the freeway with in the next 18 months. To a one they replied that they wouldn't worry about it, but just get up every day and deal with what came their way. And I said, so thats what I intended on doing also. 

    And even though I am still here after 11 1/2 years I still secretly worry and can't sleep good when I go for a CA125 test or a mamag0ram. and don't breath a sigh until I get the test results back. And I know considering all the cancer in our family it may rear its ugly self again. But until then I am going to enjoy every cold, rainy, gray day sent my way. And not feel guilty about any of them. We did not come into this world with any guarrantee and no set exspiration date. If we do have one only the good lord knows it and he isn't telling. So I think we need to enjoy the time we have on earth to the best of our ability. And that will be different for reach of us.and thats OK. M

     

     

    gray hair gypsy

    hi there,gray hair gypsy,i am not a cancer survivor,but i got the bad news yesterday that my mother has just been diagnosed with uterine papillary serous carcinoma.when the dr. told us that i felt sick at my stomach,& my knees went weak.so as soon as i could i started looking  into it and i found this web site.to tell you the truth i am very worried about my mom,but when i read about positive people like you it conforts me,& i guess what i am trying to say is thank you.thank you for being so positive and know that your post do help.

  • dubc
    dubc Member Posts: 8
    ael111 said:

    gray hair gypsy

    hi there,gray hair gypsy,i am not a cancer survivor,but i got the bad news yesterday that my mother has just been diagnosed with uterine papillary serous carcinoma.when the dr. told us that i felt sick at my stomach,& my knees went weak.so as soon as i could i started looking  into it and i found this web site.to tell you the truth i am very worried about my mom,but when i read about positive people like you it conforts me,& i guess what i am trying to say is thank you.thank you for being so positive and know that your post do help.

    Hi Jack

    Sorry for the late reply, I don't get on the site as much as I'd like.  Good to hear you're keeping it real.  Sorry to hear about some of the issues you've had to face.  I hit my 40 year survivor mark back in November!!  My newest adventure is a CSF spinal fluid leak.  (you can look it up on the internet).  Something I might be able to blame on my Radiation therapy back in 1973.  Minor Surgery should fix the problem I hope.  I really can't complain.  Considering what I went through as a child, I have remained healthy.  I owe  all the doctors that saved my life a debt of gratitude that I can never repay.  Take care all and keep up the good fight. 

  • Mik Scarlet
    Mik Scarlet Member Posts: 2
    Super long term survivor!

    Hi All,

    I've now entering my 47th year of surviving the Big C. I was diagnosed at birth with Neuroblastoma, so every one of my days has ben one as a survivor. I'm now 48, so still going strong. Every now and then a side effect of my treatment hits home, but mostly it's plain sailing.

    So a big Hi to all the other long termers out there.

    Mik

  • Catiebugbee
    Catiebugbee Member Posts: 14
    Neuroblastoma childhood survivor

    Had neuroblastoma when I was 4-years-old, mid 1990s. Met or connected with a lot of kids then and over the years who had NB, lost my last childhood NB friend a couple of years ago after she relapsed after many years of being "in the clear" so to speak. The biggest late effect I struggle with today is not my scoliosis or pain from scar tissue lesions but anxiety - I live in a constant state of anxiety, usually mild but often peaks. My remaining adrenal gland is overactive and apparently contributes a lot to the ongoing state of anxiety I have learned to live in since I was around 8-years-old. But it's really been getting me down lately as it is inhibiting my ability to get through what will hopefully be my final year of training to become a health professional. Anyone else out there who had NB or another cancer also have experience with this? I feel so alone, but surely I can't be the only one with ongoing nervousness because of past experiences with cancer?

  • SteffR
    SteffR Member Posts: 3
    HI, I am new to these

    HI, I am new to these boards and also interested in other long term survivor's experiences. I am very lucky to be 10 years out from Non Hodgkins Lymphoma, truly grateful. But like so many I have had many various and ongoing issues as a (possible) result of the cancer. I stopped seeing my onc. 3 yrs ago (my cancer was aggressive,rare, mediastinal so he kept me on longer than usual). I am American but have lived in Britain for 13 yrs and had my treatment here. At the time of my diagnosis I had a lot of people telling me to come home if I wanted the best treatment, all that sort of thing, but I ended up pretty happy with my treatment here overall and had the same treatment as far as I can tell that I would have had in the States (CHOP+Rituximab, monoclonal antibodies and radiation. And stem cell harvest though that wasn't so much a treatment as torture in the name of future insurance!).

    Since finishing treatment I have had a sluggish thyroid, a blood clot in my leg, and my gallbladder out. Seeing as I was an otherwise healthy 28 yr old when diagnosed it's hard not to wonder if these things are just coincidences. I have some residual nerve pain/my hands seize up, and of course anxiety (though lessening now) from the whole thing. I had a medistinectomy (chest cut open) pre-diagnosis as my cancer was a real b-word to diagnose because of its location and took three biopsies, which means I have pretty ridiculous scars on my chest that I have tried to learn to love. If I overexercise/stretch my chest bones sort of click slightly out of place - a weird sensation that just sort of reminds me of my history in case I forget! I gained about 30lbs during chemo (steroids), which I took most of off but in the past year have re-gained which is one of those things as a cancer survivor no one thinks you should stress about but you do. I am thinking of going off my thyroid meds as it is a v.low dose and tbh I have only gained weight since I've been on them so I don't think they are doing much good.

    Anyway hello, nice to see so many other survivors! Sorry to offload, but you know how it is in the real world you don't want to be a further burden on people than you have been already with your ailments. In general I feel a very lucky girl (er, woman, I'm 40 soon!) to be here. I really would love to read more about other's experiences, if anyone else gets as irked by cancer ignorance as I do, other issues/stresses people face as survivors, would be nice to know I'm not alone :-)

  • SteffR
    SteffR Member Posts: 3

    Neuroblastoma childhood survivor

    Had neuroblastoma when I was 4-years-old, mid 1990s. Met or connected with a lot of kids then and over the years who had NB, lost my last childhood NB friend a couple of years ago after she relapsed after many years of being "in the clear" so to speak. The biggest late effect I struggle with today is not my scoliosis or pain from scar tissue lesions but anxiety - I live in a constant state of anxiety, usually mild but often peaks. My remaining adrenal gland is overactive and apparently contributes a lot to the ongoing state of anxiety I have learned to live in since I was around 8-years-old. But it's really been getting me down lately as it is inhibiting my ability to get through what will hopefully be my final year of training to become a health professional. Anyone else out there who had NB or another cancer also have experience with this? I feel so alone, but surely I can't be the only one with ongoing nervousness because of past experiences with cancer?

    Hi I am new here too, so can

    Hi Catiebugbee, I am new here too, so can only be of so much help, but just wanted to say that I have anxiety too, we can only assume that is natural considering what we've been through. Especially if you grew up with this disease, you were so young and that must have been terrifying for you. I could barely cope and I'm a grown woman! Have you ever tried speaking to a therapist? I have shied away from it, thinking I should just put on a brave face and be grateful I beat the cancer, but tbh I don't know that it's the best coping mechanism. Where I live there are no supprt groups for my kind of cancer, which I was initially interested in, but maybe there is one near you that could help. Congrats on entering the health profession, I am sure your personal experience will help you a lot in dealing with so many things, best of luck with everything :)

  • John Ferguson
    John Ferguson Member Posts: 3
    32 years and counting

    Hello everyone,

    I was diagnosed with stage 3 Hodgkins back in 1983 Yes 1983!! Doe's that qualify as long enough???

    Full body radiation for approx. 6 months

    No reoccurance of Cancer, in fact If I didnt have my scars I probably would not even think about it anymore. 

    I truly believe a strong mindset and belief that I was not losing my life to cancer had a huge impact on my survival.

     

    I am now dealing with  multiple issues with my heart that are most likely related to the Radiation. Small price to pay for an extra 32 years of life and the opportunity to be a father.

    Yes my son is adopted, another small price I had to pay to survive was not be able to produce children, they originally gave me 8 months to live so when they suggested I use a sperm bank i thought they were being ridiculous. Who knew!!!

     

    My simple suggestion to all is enjoy every morning when you wake and never sweat the small stuff, in fact don't sweat the big stuff as you have no control over it anyway

     

    Take care and God bless 

     

  • brian50
    brian50 Member Posts: 23
    edited October 2016 #81

    32 years and counting

    Hello everyone,

    I was diagnosed with stage 3 Hodgkins back in 1983 Yes 1983!! Doe's that qualify as long enough???

    Full body radiation for approx. 6 months

    No reoccurance of Cancer, in fact If I didnt have my scars I probably would not even think about it anymore. 

    I truly believe a strong mindset and belief that I was not losing my life to cancer had a huge impact on my survival.

     

    I am now dealing with  multiple issues with my heart that are most likely related to the Radiation. Small price to pay for an extra 32 years of life and the opportunity to be a father.

    Yes my son is adopted, another small price I had to pay to survive was not be able to produce children, they originally gave me 8 months to live so when they suggested I use a sperm bank i thought they were being ridiculous. Who knew!!!

     

    My simple suggestion to all is enjoy every morning when you wake and never sweat the small stuff, in fact don't sweat the big stuff as you have no control over it anyway

     

    Take care and God bless 

     

    28 Years Plus Survivor

    Diagnosed in March 1987 with Acute Myloid Leukaemia.

    Received a Bone Marrow Transplant from my Sister October 1987

    Had a Triple Heart Bypass July 2012(never smoked)

    Married and have a 20 year old son .In full time employment had a successful life.

    Looking forward to another Christmas

    *Wishing all you fellow Long Time Survivors my Best Wishes for Xmas and 2016*

  • 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

    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. :-)

    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: 751 **

    whats NED?

    whats NED?

    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: 1,373 **
    jaceliz said:

    46 year Survivor of ALL

    Does anyone post here anymore? 

    Not much

    It's pretty slow here.