Neuroblastoma

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Comments

  • drganesh
    drganesh Member Posts: 1
    benwenli said:

    Your survivor story from two
    Your survivor story from two times of neuroblastoma stage 4 is very encouraging and what type of treatment you have and where? My grandson was diagnosed with neuroblastoma stage 4 at the end of Feb and now is undergoing chemo in Miami. We are constantly searching successful stories to inspire us as we heard so many sad stories.

    Best wishes,

    Neuroblastoma recurence

    Sir I am dr ganesh frm india my daughter  diagnosed  as neuroblastoma  stage 4s after chemo tumor gone after 12 months recurence  it localise in primary site left adrenal gland she went to laparoscopy and now local  radiation   we are planning  for immunotherapy  plz advice 

  • melinda68
    melinda68 Member Posts: 22

    Stage IV now cancer free!

    My daughter Carissa was 9 months old when she was diagnosed with stage IV Neuroblastoma.  She went through surgeries removing the tumor and her kidney, along with the hardest chemo because of the stage she was in.  She is now a healthy 8 year old and has been cancer free for close to 6 years!  Thank you so much for starting this thread.  I occasionally get caught up in the statistics and love to see survivor stories.  I am so happy that you made though and that you are doing well!

    neuroblastoma

    Hello my cousin's baby was diagnosed with Neuroblastoma at age 6months stage 3 she had to undergo 8 rounds of chemo andsurgery to remove the tumor at almost 1 yr old she is now 22 months and had MRI today the Doctor said it showed lighted area where the previous tumor was and hopefully just scar tissue but is going to do MIBG next week to see if there is any activity

  • djweidle
    djweidle Member Posts: 1
    brain tumor survivor

    Hey Aquagirl!

       I was diagnosed at a very young age as well. I had medulloblastoma. I had some friends with Neuroblastoma. I'm also looking for friends who understand cancer survivors. I also feel extremely fortunate. I have some late affects, but considering what else they could be, i feel very lucky. I feel that the cancer world has a special place in my heart and I made the best friends at Camp Sunshine (children's cancer camp). It's so special to have friends who understand you and know what you're going through and you're not afraid to share anything with them because you know they won't judge you. My goal in life is to also help increase cancer awareness. 

    God Bless!

  • Emily.Walker
    Emily.Walker Member Posts: 1

    My son is 2 months old and
    My son is 2 months old and he just got diagosed with neuroblastoma. They have to do some more test to see what stage he is in.

    Hi my name is Emily and i am doing a reaseacher paper on neuroblastoma and i was wondering if you could tell me the expirence you had with your son. i am a survivor myself and i need more information if you wish not to share i completely understand.

     

  • eimearconnell
    eimearconnell Member Posts: 1
    edited December 2016 #46
    3 year old neuroblastoma UK

    My 3 year old nephew was diagnosed with stage 4 high risk NB in july 2015.  He has just completed 18 months treatment in UK and re staging scans performed last week have shown 3 'stable' hot spots remaining.  We have fund raised over the last 18 months to take him to USA to embark on the DMFO trial but as we have not received NED this is no longer an option.  Please please is there anyone on here who has recent experience of NB?  Has anyone received pioneering treatment anywhere in the world in the last few years that has been successful? The paediatric oncology team have basically told the family to make the most of family time, however long that may be.  Any correspondance greatly appreciated

    Regards

    a family in despair  Cry

  • Sadielouann
    Sadielouann Member Posts: 1
    My husband was diagnosed with

    My husband was diagnosed with neuroblastoma at the age of 23, he lived app 1 year 3 months after diagnosis. That was 29 years ago. Always wondered if anyone older was ever diagnosed?

  • rickgood
    rickgood Member Posts: 1
    Grandson Damien

    Hi,  my grandson has just been diagnosed with Neuroblastoma stage four,  he is almost two,  I need to know about this disease and what we can expect and how I can help.   Is there anyone out there that can help me?  

  • JRHAL86
    JRHAL86 Member Posts: 1 Member

     
    Hi,I had Neuroblastoma in

     

    Hi,I had Neuroblastoma in 1974.I am now 40 and going strong.I only have one kidney which is not working correctly. But I have been talking to a lady whose daughter had the same. But unfortunately the little girl died last week.makes you realise how strong and lucky we are.

    My daughter was 18 months

    My daughter was 18 months when she was diagnosed with stage four NB. She's now almost 8! Can I all you how old you were when they found the cancer. That's a great survival story I might ask!

  • mj1976
    mj1976 Member Posts: 3
    rickgood said:

    Grandson Damien

    Hi,  my grandson has just been diagnosed with Neuroblastoma stage four,  he is almost two,  I need to know about this disease and what we can expect and how I can help.   Is there anyone out there that can help me?  

    rickgood- Grandson Damien

    I'm sorry to hear about your grandson.  My wife and I are also faced with a neuroblastoma diagnosis with our daughter (she was 13 months at diagnosis, stage 2B).  There are many different prognostic factors that are much more important than stage.  We've learned (through many hours of research) that neuroblastoma is a very wide spectrum disease (ranging from very benign forms that the body fights off on its own to very aggressive forms that don't respond to any level of treatment).  If your grandson was almost 2 at diagnosis, he passed that magic 18 month marker which usually has a better prognosis all around.  HOWEVER, the real things to focus on our NMYC amplification result and histology (favorable or unfavorable).  These will be crucial in the classification of medium or high risk.  The treatment protocol between the two are extremely different.

    I'm assuming since your post was back in May, you already havae most of the information referred to above, and have been on some form of chemo protocol since then.  Please reach out if you still need to talk about the situation.  We have gotten into contact with some of the best oncologists and naturopathic oncologists in the US, and it definitely makes a difference in terms of treatment success.  In any case, I pray that the treatment he has received thus far is working well, and that his level of suffering through the treatment has been manageable for him (and his parents).  No child should have to suffer like this, and unfortunately our traditional treatments (poison, cut, burn) have lasting impacts that still need to be dealt with at the end of the nightmare.....

  • seniorb1973
    seniorb1973 Member Posts: 1

    neuroblastoma 'stages'?
    Hi all--I was diagnosed with a neuroblastoma in my abdomen at age 8 weeks, BACK IN 1958! Doing the math, that makes me just past 51. So I'm about 51 years post cancer--yeah! But I'm curious because I hear people talking about 'stages' and back in the day, when I was diagnosed, the Doctors in So.CA. didn't know of ANY other childhood survivors, let alone talk about 'stages'. (Althoug one person wrote in and said his brother was diagnosed in '53, which means he gets the 'oldest survivor yet' prize for the disease).

    Although I don't know what the stages mean, I can tell you that mine was in my abdomen and at that time the doctors believed it had 'just started attaching itself to my spine..." Anyway, the good news is that I grew up strong and healthy, like other kids. I did have some bladder problems, and I often wonder if I wasn't an undiagnosed ADHD, but none-the-less, I excelled in sports and in academics, and ended up getting my Ph.D. in psychology. I have lived a rich & full life, have raised 4 kids (who we adopted due to my early menopause and inability to have our own), have climed 13 'fourteeners' (14,000+ foot elevation peaks in Colorado) and, when younger, biked 5 summers in a row about 100 miles per week, culminating in 300-400 mile tours throughout Colorado high country passes. I couldn't ask for a better life!

    I have had 2 subsequent tumors (bignign)removed from my lower back--but those are apparently because of the radiation treatments I got in '58. (Back then they didn't know not to irradiate a neuroblastoma) So--CHildren can ad do survive this thing!

    I pray that both of your children will grow up to be evn stronger and brighter than I!

    --Maryruth

    Hello Maryruth,

    Hello Maryruth,

    My name Is Brent I am a Neuroblastoma survior from 1973. I was diagnosed when I was 9months old. I went through Chemo, Bonemarrow transplants and radiation for a few years. Mine started off in my abdomen as well. When Discovered mine was Stage IV. Would Like to chat with you some day. I haven't never in 46 yrs talked to not 1 survior of the same cancer as I once had.

  • ebug1112
    ebug1112 Member Posts: 1

    NEUROBLASTOMA DIAGNOSTED IN 1965
    I am a 45 year suvivor and I want to find out how many more uf "us" there are out..

    Neuroblastoma 1954

    I was treated with cobalt radiation in 1954 for a ganglio-neuroblastoma which is a neuroblastoma on the upper spine.  I was 18 monthis old.  That was 67 years ago this month.  I still have a copy of the hospital bill for the radiation treatments.  At that time, health insurance did not cover them.  The bill was for $160.00.    I have been healthy, had 2 healthy daughters,  and now have 3 healthy grandchildren.    I worked for 34 years as a pediatric nurse and am now “retired” but as busy as ever.  Side effects from radiation:  Carotid  artery stenosis and aortic valve stenosis.  These are monitored by ultrasound every 2 years. No changes have occurred.  Benign thyroid nodules starting at age 13.  These resulted in 2 partial thyroidectomies and then a total thyroidectomy.  Vocal cord paralysis just recently.  This was treated with a surgical procedure in which a nerve was moved from my neck to the vocal cords and re-enervated them.  Weakened tooth enamel resulting in more cavities growing up then my siblings.   Muscle tightness and weakness on my right side. Stretching exercises help, especially when done in the shower.  Scar tissue in the apex of my right lung.  This isn’t terrible, I just have to pace myself.  It is significant that when I had radiation, no shielding or localizing was done.  I was told that iI was irradiated from the waist up which is no longer done.