Our little daughter - NB stage 4

(jindrich daniel) #1

Hello to everyone from Austria,
4.4.2018 we were hospitalized in Salzburg and get the bad diagnosis NB stage 4, without MYCN but gain on chromosom 17q, metastasis in bone marrow, skelette and liver. Since than our little daughter (2y 9m) received the 5th chemotherapy according to SIOPEN.
Right after the first cycle she was free of pain and is very active in playing around with brother and sleeps very well.
After 4th cycle there was ultra sound and bone marrow biopsy done, the tumour seems to get smaller and bone marrow is free of cancer cells. Now we look forward to the next big control after 8th cycle and hope the results will be even better.
Since diagnosis I am contacting hospitals accross Europe for second opinion for instance Institut Curie in France or St Joan de deu in Spain.
Can anybody tell us what is about the gain of chromosom 17q? What else can be checked up regarding genes and further cure according to it?
Any new treatments?
Many thanks in advance for each information.

(Nasos Mwraitis) #2

Ηι daniel. Our daughter is nmyc free and has 17q when diagnosed in 2014. We had good response in the first 8 cycles but bone marrow was not completely free. So we did some extra rounds and achieved free bone marrow before get into transplant. After radiation and finished with immunotherapy american triple which includes il2. We are ned for 2.5 years .
Back then no specialized treatment for 17q so we followed the protocol but we were careful to do all steps in time and not delayed.
If you prefer barcelona then you wont have to follow transplanation since they follow memorials protocols.
Wish you all the best

(jindrich daniel) #3

Hi Nasos,
thank you for your message. Did your daughter have also metastasis on skelette or somewhere else? You are not mentioning any surgery, did your daughter went thru? Thanks a lot for your answer! Daniel

(Nasos Mwraitis) #4

hi daniel. yes of course we had 2 surgeries for removal primary tumor and after residual masses in other part. we had metastasis on bone marrow massive (more than 80%) and like i said other masses far from primary . also skelette that only shown on pet scan but cleared fast and a distance spot around neck that had to radiate after transplant.

(barbara) #5

Hello Daniel,

Ebenfalls Grüße aus Österreich! :slight_smile: For the general understanding I will continue to write in english.
I can’t help you very much with your questions, I just wanted to shortly tell our story, maybe it gives you (and others) some hope.
Our son was diagnosed in August 2015, when he was 9 month old, with high risk neuroblastoma, stadium 4 with MYCN amplification and del1p36. Two large masses were wrapped around both adrenal glands, metastases were found in bones, bone marrow, the liver and lymphnodes. So the preconditions also were not the best ones, but the therapy (also SIOPEN) went according to plan, he responded very well and we are now over a year post treatment (which lasted 18 month) and everything is still fine! (Besides a very rare generic disorder called Snyder-Robinson Syndrome, which was diagnosed about a year ago, but that’s a different story and has nothing to do with the neuroblastoma :wink: )
Of course the fear of a relapse is still present, but with every day it moves into the background a little more.

All the best,

(jindrich daniel) #6

hi nasos,
I hope your daughter is still NED and all of you are fine! we just finished TVD last thursday and waiting now for stemmcellrescue. After 8 cycles all metatasis disappeared and tumour shrunk, but still wrapped around the gland. So we did TVD and hope for better results. Early september she undergo surgery. Did your daughter have any minimal residual masses after the surgery? br jindrich

(Nasos Mwraitis) #7

Ηι daniel. Glad news are good. As i said we had a primary surgery which removed tumor and adrenal gland of course. After we had extra surgery on thw other side for remaining masses. All these were after tvd . Then since we had clear all spots and bone marrow was also cleared we got into autologous trasplant rescue. We believe its important to be clear before u do the trasplant. After transplant radiotherapy on main previous masses and finished with immunotherapy.