Neuroblastoma survivor with ?'s

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  • Aquagirl18
    Aquagirl18 Member Posts: 45
    jillebob said:

    More...
    Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
    https://www.facebook.com/home.php?tab=4#!/groups/2255398912/

    Thanks its always good to connect with other survivors,I'm on facebook and didn't know there was a group. I am on the N.C.C.S page though and Curesearch.
  • Carlas
    Carlas Member Posts: 3
    so__nu said:

    Hi-
    m also a long term survivor of neuroblastoma. I was diagnosed and started treatment in 1972 when I was 14 months old. My treatment included surgeries, the removal of my left kidney and adrenal gland plus lots of chemo and radiation (I very possibly got higher doses of both than you since I was treated 6 years earlier). I'm 36 years old now and have become very knowledgeable about the long term effects of the treatment we received. Like you, I knew very little about what happened to me beyond the name of the cancer I had and other general facts. Actually, there wasn't much more to know until recently. In the 80's, the numbers of kids that survived cancer dramatically increased (although neuroblastoma's numbers are still low because it is often misdiagnosed as food allergies or colic). These younger survivors have been studied as they've gotten older and there is much that people like us can find out. Your records are likely still available! Contact St. Jude in Memphis, TN. They are now the headquarters for a huge national study on survivors of childhood cancer (Children's Oncology Group). They may already have your info on file. If not, they'll search for it. I was stunned when a few years ago when I was contacted by these researches---especially since I was treated in Denver and have since moved to 3 different states and several more addresses! I get free annual extensive checkups every year from my local children's hospital that is part of this study. Many, many hospitals across the country take part in this program.
    All of my data is sent to the researchers (my name isn't used). I feel good about this--since I'm older than most survivors, my info is very important. Sorry if I sound like a commercial---not my intent.
    Starting at age 29, I have had some medical problems as a result of the cancer and treatment. I also have other traits that the chemo and radiation caused. For example, I have a LOT of difficulty with math and spatial relations. Evidently, this is a side effect of the chemo I received. Researchers now know that learning disabilities like this can be caused by some of the drugs neuroblastoma was treated with. Also, I am evidently going into early menopause. There's more... I am more than willing to share my experiences---there is much we all need to be aware of. It's scary for me still to go to my checkups and think about some of the late effects, but I believe it is critical to my continued good heath to do so. I have never met or even talked with another neuroblastoma survivor. I've always been the only one---I think it would be nice to get to know some of you. No one else can really understand this part of who I am except others that have been through it too.
    Best regards, Jennifer
    [email protected]

    muscle scar tissue later
    I am 44 years old and had Neuroblastoma surgery (3 tumors) when I was 18 months old. I had radiation and some chemo. I also have a scar that stretches across my lower abdomen from hip to hip. At 27 years of age I was dianosed with arthirits in one of my hips and was told to deal with pain aslong as possible through self medicating up to 800 mg og ibuprofen as needed and years later would need hip replacement. Years have passed and I have since relocated to NC from OH. I have seen a new family doctor who appears interested in my history. He has told me he believes this pain is related to scar tissue pulling on the muscle due to my growth from infant to adult and stated it is not arthritis. He seems to recognize the pain I have as well as loss of range of motion. I have not been able to ride my horse for about 3 years and had some discomfort prior to that. Walking is also painfull at times. My doctor seems caring, but has only pointed out how lucky I am to be here today and that most people whom have had this serious surgery have to wear cholostomy bags today. He has not offered any suggestions (only to continue self meds) regarding the scared muscle and pain. I always have stiffness and the pain comes and goes though more now days and is extremely painfu. I am not looking to take heavy pain killers (prescibed). I am wondering if there is a treatment anyone knows for this? With my doctor's response, it seems as though I should live with this pain. I have never had children due to infetility and only had mentration from 15years of age to 27 years of age due to horomone medication doctors had me on. If anyone has any suggesstions let me know.

    I had bilateral ( both hips) total replacement with anterior procedure done on 6/3/2011. The scars are on the tops of my hips. I feel so much better and the pain is gone. FYI the muscle scar tissue had nothing to do with my pain. I had bad arthritis in both hips. I kept after my doctor until he made the orthopedic refferal. I did not go with fist one which would have been done one hip at a time and I would still be in pain. I did the research and got a 2nd opionion and that doctor asked if I had thought about doing both the same time, because of the damamge I could have done to the one operated on having to use a bad hip to heal on. I would reccomend the rarely done anterior procedure ( most hospitals in US do not have the special expensive table required for this operation, though it is done regular in Europe)to anyone having arthritis in both hips. The neuroblastoma cancer is what caused the arthritis later in life in both of my hips. I will find out next week when I will be able to ride again. I was walking 2 miles 3-5 times a week in less than 2 months (end of July). I graduated from in home PT a week early and outpatient PT 2 weeks early. The recovery time is so fast it has been amazing and all my freinds say I look like a totally different person walking upright instead of swayback and limp is gone. I am so much happier being pain free.
  • ErinNicole
    ErinNicole Member Posts: 1

    NEUROBLASTOMA DIAGNOSTED IN 1965
    I am still reeling from finding this page...so much now falling into place...the math phobia...even with a high IQ...I was diagnosed on my first birthday - a Saturday morning, September 26th of 1965 when I could no longer pass urine. A tumor the size of a small orange was found free-floating in my abdomen right in front of my spine. It was "resected in situ" on Oct. 13, 1965 and I was sent home with less than a 30% chance of survival past my 15 month milestone. I had not "pulled up" in the playpen nor made any attempts to walk... I clearly remember waking up in the hospital crib, it's green bars holding my feet up so I wouldn't tear the stitches...after crying "Mommy up!" all day, they finally untied me and I proceeded to run everywhere. Due to the poor prognosis of all NP patients at that time, it was recommended (after I survived another two months) that I be placed in a clinical trial at MD Anderson in Houston where I was given a 3000 RAD Tumor dose to the abdomen and took Cytoxin orally, 4X daily for 24 consecutive months. Although I have had no recurrance of the original tumor, I have had bilateral radiation necrosis which caused the growth centers in my femur(s) to slip and so were surgically pinned and I spent from 1973 - 1975 on crutches, and then in a wheelchair. After having to learn to walk again twice before my 11th birthday, I later underwent bilateral total hip replacement and now have better range-of-movement than before due to the diminished size of my pelvis/hips post radiation. I also have lost all of my teeth but have a fabulous pair of fake ones and never have to worry about flossing :) Sorry for running on but I am a bit overwhelmed at finding ANYONE who has ever heard of NB, let alone survived it. I have found my soulmates at last!

    HI my name is Erin I am 21
    HI my name is Erin I am 21 and a Neuroblastoma survivor I was diagnosed at the age of 9months with stage 4. My body is marred with the scars of a debalking, several line placements, an exploratory surgery to my left shin, and numerous small round marks to my lower back from bone marrow testing. I have been in remission for 18 years and had thought I had reached the point where Neuroblastoma couldnt hurt me any more. I am legally blind in my left eye from pressure to my optic nerve provided by a tumor, but that was my only lasting affect from my bout with cancer. However last year I fell very ill and my lack of an Adrenal gland was uncovered. During my debalking it had been removed, yet I was uninformed of this. My remaining adrenal gland does not function properly leaving me adrenaline insufficient. I now am on a daily medication that if skipped could send me into a "crisis" and potentially kill me. I am so frustrated with my physical and mental limitations. After i went into remission my parents were told i would be short, stupid, socially awkward, and much worse. Growing up i was a bit eccentric yet still thrived. I played the trumpet, basketball, served on student counsels, FFA leadership roles, showed live stock, attended youth group, was in honors classes and more. I have always had lost ofloved ones around. My family is very supporive and willing to tell me all about my illness. Yet I tried for so long to forget it. I am very high strung an prone to panic attacks. I have sensory memories from my bout with Cancer and things like florescent lights, white rooms,specific tone my mother has, trigger the sensations of that time. I feel almost as if I am haunted by the emotions of a toddler. I work closely with Children's Miracle Network in my area to raise funds for research to find cures and treatments for todays sick kidos. Yet, i have never met another Neuroblastoma survivor. I have so many questions and stories i would like to share. This evening I have wept for you in sadness and gratitude for your your plights adn survival. Please keep me in you prayers and include me in your conversations. I can see how this is an excellent opportunity for bonding and internal growth. I have often expressed my feelings as "broken" because i dont know how to ever get to a normal state of being. Normal people dont cling to a 20yr old Pooh Bear when the day has been so long and hard that the whole room melts away and its as if i am strapped to a board with a needle in my back and my mom is stoking my hair saying "just one more". Normal people dont forgo sad because its just easier to be mad. Normal people havent been told their whoel life they are put here for a reason, God allowed them to survive to accomplish something great and yet a 21 still haven't got a clue...I am inspired that so many of you have children because i so badly want to be a mother. Mine has been my everything all these years and i so desperately want to pass that love and legacy on to another life. ...Well enough of my sad story for one night. Thank you again for your honest life stories and i wish you all the best. hope to talk soon!
  • Lukemcglennon
    Lukemcglennon Member Posts: 4

    Questions about Neuroblastoma
    Hi reen, I am dealing with the same issue. I have very little information about my diagnosis. I do know that it was stage 4 and I was 13 months old when doctors told my parents the news. I had chemo and radiation and one of the drugs was experimental and it caused my heart to fail. I have been living with cardiomyopathy ever since. I had surgery to remove my kidney and adreanal glad. In also have many other late effects from my treatments. I was treated in what I call the "dark ages" in the late 70's 80's. (I am 32 now)The hospital I was treated at was able to give me some info on the drugs I was given but I have no file and there is no other information.

    Hi, i am a 21 year old boy
    Hi, i am a 21 year old boy who was diagnosed with NB in january i have had 5 rounds of chemo and waiting surgury, it has no n-myc amplification i am searchin for long turn survivors who was diagnosed at a similar age to me to give me a little bit of hope thank you
  • JeannieRu
    JeannieRu Member Posts: 4
    so__nu said:

    Hi-
    m also a long term survivor of neuroblastoma. I was diagnosed and started treatment in 1972 when I was 14 months old. My treatment included surgeries, the removal of my left kidney and adrenal gland plus lots of chemo and radiation (I very possibly got higher doses of both than you since I was treated 6 years earlier). I'm 36 years old now and have become very knowledgeable about the long term effects of the treatment we received. Like you, I knew very little about what happened to me beyond the name of the cancer I had and other general facts. Actually, there wasn't much more to know until recently. In the 80's, the numbers of kids that survived cancer dramatically increased (although neuroblastoma's numbers are still low because it is often misdiagnosed as food allergies or colic). These younger survivors have been studied as they've gotten older and there is much that people like us can find out. Your records are likely still available! Contact St. Jude in Memphis, TN. They are now the headquarters for a huge national study on survivors of childhood cancer (Children's Oncology Group). They may already have your info on file. If not, they'll search for it. I was stunned when a few years ago when I was contacted by these researches---especially since I was treated in Denver and have since moved to 3 different states and several more addresses! I get free annual extensive checkups every year from my local children's hospital that is part of this study. Many, many hospitals across the country take part in this program.
    All of my data is sent to the researchers (my name isn't used). I feel good about this--since I'm older than most survivors, my info is very important. Sorry if I sound like a commercial---not my intent.
    Starting at age 29, I have had some medical problems as a result of the cancer and treatment. I also have other traits that the chemo and radiation caused. For example, I have a LOT of difficulty with math and spatial relations. Evidently, this is a side effect of the chemo I received. Researchers now know that learning disabilities like this can be caused by some of the drugs neuroblastoma was treated with. Also, I am evidently going into early menopause. There's more... I am more than willing to share my experiences---there is much we all need to be aware of. It's scary for me still to go to my checkups and think about some of the late effects, but I believe it is critical to my continued good heath to do so. I have never met or even talked with another neuroblastoma survivor. I've always been the only one---I think it would be nice to get to know some of you. No one else can really understand this part of who I am except others that have been through it too.
    Best regards, Jennifer
    [email protected]

    Now You've met a 52 year survivor
    Hi,
    Diagnosed at age 3 and now I'm 55. Still alive and kicking... but I'll admit radiation is the gift that keeps on giving. I guess I dropped off the charts before thay started tracking long term survivors because I've never been contacted for any studies. Might be nice to get the FREE check-ups though LOL!

    Lots of challenges but not a sob story.

    Stay Tough,

    xoxox
    Jeannie
  • JeannieRu
    JeannieRu Member Posts: 4

    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth

    Mary Ruth? are you still with us?
    I was 3 in 1960. Went through the cut it out thing three times with Cobalt 66 radiation. I've had some major issues because of the radiation to my neck, chest and back.

    Have you had problems from the radiation?

    Jeannie
  • scutchgrass
    scutchgrass Member Posts: 6

    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth

    Neuroblastoma update

    Hi!

     

    I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

     

     

  • scutchgrass
    scutchgrass Member Posts: 6

    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth

    Neuroblastoma update

    Hi!

     

    I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

     

     

  • scutchgrass
    scutchgrass Member Posts: 6

    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth

    Neuroblastoma update

    Hi!

     

    I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

     

     

  • KY Girl
    KY Girl Member Posts: 1
    JeannieRu said:

    Mary Ruth? are you still with us?
    I was 3 in 1960. Went through the cut it out thing three times with Cobalt 66 radiation. I've had some major issues because of the radiation to my neck, chest and back.

    Have you had problems from the radiation?

    Jeannie

    Jeannie, i was diagnosed in

    Jeannie, i was diagnosed in 1958 with neuroblastoma when i was 18 months old.  I had a tumor the size of a grapefruit pushing up against my right lung.  I had surgery and follow-up radiation.  I'm curious if the health issues you have are similar to mine.  I have diminished lung capacity, and aortal stenosis.  Neither are causing me too much problems yet.  I have other issues, too, but those are the most serious.

    Would love to hear back from you, as i have never talked to anyone else who had this.

    Judy

     

  • KickedCancer
    KickedCancer Member Posts: 6

    Hi, i am a 21 year old boy
    Hi, i am a 21 year old boy who was diagnosed with NB in january i have had 5 rounds of chemo and waiting surgury, it has no n-myc amplification i am searchin for long turn survivors who was diagnosed at a similar age to me to give me a little bit of hope thank you

    Lukemcglennon

    Hi Lukemcglennon,

    I was diagnosed with stage 4 NB when I was 12 years old. I know that there is a big difference between doing treatments when you're 12 and doing treatments when you're 21 but I am here if you have any questions or comments or if you just want to vent. 

    Hang in there!

    KickedCancer