Neuroblastoma

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,

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 

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!

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  

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 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?  

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.....

indiareynolds said:

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

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.