Ganglioneuroblastoma

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  • Lukemcglennon
    Lukemcglennon Member Posts: 4
    #22
    dancer21 said:

    How are you?
    Hi all,

    Not been on here for a while and just wanted to see how you were all getting on?
    I can't believe how quickly time had flown by. I am now almost 9 years in remission. However, still not a great deal known about us!

    Hope you are all keeping well.

    Best wishes

    x

    Gnb
    Hi i am also 21 and have ganglionueroblastoma, i am havinh treatment would like to chat sometime
  • dancer21
    dancer21 Member Posts: 18
    #23
    Lukemcglennon said:

    Gnb
    Hi i am also 21 and have ganglionueroblastoma, i am havinh treatment would like to chat sometime

    Hi Lukemcglennon, how are

    Hi Lukemcglennon, how are things going? Sorry for the late reply, I've just seen your posts. Get in touch if you'd still like to chat.

    dancer21

  • ScientificCompassion
    ScientificCompassion Member Posts: 1
    #24
    dancer21 said:

    How are you?
    Hi all,

    Not been on here for a while and just wanted to see how you were all getting on?
    I can't believe how quickly time had flown by. I am now almost 9 years in remission. However, still not a great deal known about us!

    Hope you are all keeping well.

    Best wishes

    x

    Brother in early 20's just diagnosed

    Hey all,

    My little brother, who is 23, was just diagnosed with a malignant version of this. He starts chemo next week. Is anyone on here someone who survived/is surviving in adulthood? Do any of you have suggestions of things that you found helpful that I could do to support him? 

    Much love.

  • dancer21
    dancer21 Member Posts: 18
    #25
    ScientificCompassion said:

    Brother in early 20's just diagnosed

    Hey all,

    My little brother, who is 23, was just diagnosed with a malignant version of this. He starts chemo next week. Is anyone on here someone who survived/is surviving in adulthood? Do any of you have suggestions of things that you found helpful that I could do to support him? 

    Much love.

    Hi ScientificCompassion,
    How

    Hi ScientificCompassion,

    How are things going for you and your brother?

    Ganglioneuroblastoma is malignant (it's ganglioneuroma which isn't). I am an 11 year survivior of it.

    Hoping things have worked out well for your brother.

    Best wishes

  • aece72
    aece72 Member Posts: 1
    #26
    Diorssister said:

    Hi everyone,
    Just wanted to introduce myself (am 24 and live in Australia). I have a 3year old sister with ganglioneuroblastoma, and have been trying to gather info on the topic. It has been very difficult to find, with most things directing me to neuroblastoma, however I have managed to find a few articles and websites with basic info. Just wanted to let anyone interested to let me know via this discussion board if they would like me to email them the stuff I have. Also, if anyone else knows anywhere that good info can be found it would be much appreciated if it could be shared. I know that the info I have is only based on children, but I am sure that some of the facts of the disease (i.e. staging, treatment) are similar or the same. Let me know if you are interested. Hope all is well.

    My Little Boy having Ganglioneuroblastoma

    Hello My name is Angie! Oct.2013 I found out  my 7 year old son has Ganglioneurblastoma! We didn't even know he had it until he got really sick and they took a X-Ray. It was attacked to his spine and was 3 times bigger then his heart. They got 95% of it but the 5 % is still attacked to his spine! He go's every 3 months to st.jude for his test and scan's but we ain't for sure on the chance it will come back.We are so scared we are going to go one day & they tell us it's back and he will have to had treatment. I would like any info you have please on Ganglionuerblastoma. Thank you. 11/16/14 My son just had his 3 month check up on 11/13/14 He has his CT-Scan,Blood & Urine test done.We got the results from his CT-Scan and his Ganglioneuroblastoma is smaller now and his blood work came back ok.We should have his Urine results back next week.Starting March 2015 we will go to St.Jude every 4 month for his check up and test's. 

  • J9cancerbaby
    J9cancerbaby Member Posts: 1
    #27
    Ganglioneuroblastoma

    Hi.... I had ganglioneuroblastoma when I was 3 months old in 1966..   I had a radiation treatment called cobalt which to my knowledge is not used much these days.. I was lucky enough to be in Ca so they had this treatment available. I was not expected to live, they told my mom eveyday after treatments to just take me home and enjoy the time I had left....  Anyway I am actually looking for anyone who had this so long ago and see if they are having any problems these days?  

    All you that are going through it now with your kids.....never give up!  My mom did not, I had a mom that fought every battle with me... Take care

  • blakesmom07
    blakesmom07 Member Posts: 2
    edited June 2017 #28
    Ganglioneuroblastoma

    My 9 year old son was just diagnosed in april 2017 with a ganglioneuroblastoma. the Doctor took the baseball sized tumor out completely but had to also take the lining of his kidney. we did scans and they didnt see anymore cancer, then we did a bone marrow biopsy and aspiration those were clear. the doctor said she doesnt know if it will come back. has anyone ever had ganglioneuroblastomas on their kidney come back? The doctor has scheduled scans every 3 months

  • mj1976
    mj1976 Member Posts: 3
    #29
    blakesmom07 said:

    Ganglioneuroblastoma

    My 9 year old son was just diagnosed in april 2017 with a ganglioneuroblastoma. the Doctor took the baseball sized tumor out completely but had to also take the lining of his kidney. we did scans and they didnt see anymore cancer, then we did a bone marrow biopsy and aspiration those were clear. the doctor said she doesnt know if it will come back. has anyone ever had ganglioneuroblastomas on their kidney come back? The doctor has scheduled scans every 3 months

    blakesmom07- have hope

    Ganglioneuroblastoma is a less malignant type where there is an intermix of cell maturity.  The fact that bone marrow aspirations and guessing MIBG scan were negative for metastasis is a good sign (localized, resectable).  Provided there was no NMYC amplification, and favorable histology (which GNB somewhat infers as long as MKI is low), than the chances of relapse should be low.  There are treatments (both naturopathic and traditional) that can help inhibit recurrence, and you should definitely discuss those options with your oncologist.  Cis-RA, DFMO, vaccines, etc. 

    Scans will be front loaded with ones occurring every 3 months for the first year or 2, then they taper back to 6 months for a year, and then yearly scans after that.  The highest likely hood of recurrence will be within the first two years.  If that does happen, and it is local (at the same tumor site that was removed), then salvage therapies would be employed.  This may consist only of a second surgery and/or rounds of chemo.

    If you need references to some excellent resources, plese let me know and I can point you in the right direction.  Best wishes and prayers for event free scans and ultimate cure.

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