Bilateral Adrenal Neuroblastoma
 

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04-24-09 01:48 PM
woolwijl
Bilateral Adrenal Neuroblastoma
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When we went into the ER room for a small lump I found on Jackson's belly that afternoon, we entered the world of Neuroblastoma. The scan showed a large tumor on his right adrenal gland and a smaller tumor on his left, with lymph node involvement. We are done with three rounds of chemo and will have surgery at MSKCC in NY on May 8. The doctors, both at our home hospital in Norfolk, Va, and the doctors in NY, have been really curious about Jackson's cancer because it is Stage III, nmyc amplified and involves both adrenal glands. The chemo has significantly shrunk the tumors, his belly is so flat! I am interested to see in anyone else has had bilateral adrenal NB; the doctors think that the left small tumor might be a ganglioneuroma (rare), but we won't know until it's biosied. It's just so rare to have Stage III; and it's just so rare to have bilateral adrenal Neuroblastoma, that I've just been so hungry for information, but have found hardly anything.

Thanks,
Jessica Bensten

Mom to Jackson, age 16 months, diagnosed 2/15/09, stage III, n-myc amp, high risk

 

08-05-09 01:59 PM
fperalta
Re: Bilateral Adrenal Neuroblastoma
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Hi Jessica, my son was also diagnosed with bilateral adrenal neuroblastoma, very rare, the tumors were "accidentaly" found when he was having an ultrasound for something else when he was born. He is in observation right now, the tumors have been decreasing in size, it appears that the left adrenal tumor has disappeared and the right is very small, but he now has more tumors in his liver, we are waiting for the biopsy results to find out if he is NMYC amplified. Like you we have done a lot of research on internet about bilateral adrenal NB but there is not much information. Please let me know if you find anything. How is Jackson doing? did he have his surgery? Hope everything is going well.

 

Fabiola

08-05-09 03:17 PM
woolwijl
Re: Bilateral Adrenal Neuroblastoma
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Hi Fabiola,

Jackson just had his stem cell transplant this morning! He's doing fairly well today, considering the last week he's had with chemo and then the transplant. Overall he's done really well. Since after his fourth round of chemo he's been NED (no evidence of disease) with all his tests/scans. Jackson did have surgery on his right adrenal gland at Sloan Kettering by Dr. LaQuaglia - he is a FANTASTIC surgeon and was able to get all the tumor out. He removed a lot of lymph nodes, but only one was positive for NB. The left side disappeared with chemo on it's own. Jackson was n-myc amplified so we will have radiation, Accutane and Immunotherapy after this, but hopefully will remain NED forever after all this.

I'm sorry you find yourself in this world, but I'm glad you're son is young. With Jackson, he either feels well or he doesn't; we either play or rest. There are no mind games, and statistically the younger you are when diagnosed, the better the outcome. Jack was 13 months old at diagnosis - it was devastating, but we just follow his lead.

Jessica

08-13-09 10:45 AM
audreycarver
Re: Bilateral Adrenal Neuroblastoma
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Hi everyone,

My daugter (4 months) also has neuroblastoma. She was diagnosed before birth. We have had our share of ups and downs that is for sure. She is doing really well right now and has finished her second round of chemo. She is an awesome little fighter and most importantly, God's little warrior!!! We will do 4 rounds of chemo to start and then rescan to see how she is. You can read her full story at www.caringbridge.org/visit/isabellacarver. I will be praying for each of your little ones!!!

With love, hope, and prayers,

Audrey Carver

08-27-09 12:11 AM
fperalta
Re: Bilateral Adrenal Neuroblastoma
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HI Audrey, I am sorry to hear about your baby, I visited your site, your twins are beautiful. My son Aaron is also 4 months, he was born april 8. I am glad to hear that she is doing very well with chemo. You can read my story at www.caringbridge.org/visit/aaronissacperalta. We are from El paso Texas, but moved temporarily to Dallas 2 weeks ago. He had a biospy last week, and our next appointment is next friday, and hopefully we will know what his treatment will be. He was diagnosed at birth but had no treatment since doctor decided to wait and see, but now here we are in Dallas area after his low risk stage IVs became high risk. You are very strong and every time I visit your site you make me feel better, stronger.  It is hard, I know but we need to have faith in God, there is nothing we can do but have faith and pray. I will also be praying for you daughter and for you.

Fabiola 

06-23-13 07:05 AM
sophias mommy
stage 4s?
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. my daughter Sophia has stage 4S neuroblastoma and she is 4 weeks old. She has it in both adrenal glands and we started chemo because her liver was getting bigger. She is doing well. Does anyonw have any experience with stage 4s?