# Treatment / Research **URL:** https://nbforum.discourse.group/c/treatment-research/5.md [Latest](https://nbforum.discourse.group/latest.md) · [Categories](https://nbforum.discourse.group/categories.md) --- ## [About the Treatment / Research category](https://nbforum.discourse.group/t/about-the-treatment-research-category/14)
**Author:** [@KyleMatthews](https://nbforum.discourse.group/u/KyleMatthews)\ **Replies:** 0
Discussions of anything regarding treatment or research. --- ## [Leaving COG treatment during consolidation](https://nbforum.discourse.group/t/leaving-cog-treatment-during-consolidation/908)
**Author:** [@russconcrete](https://nbforum.discourse.group/u/russconcrete)\ **Replies:** 0\ **Last updated:** [April 4, 2023, 11:45am UTC](https://nbforum.discourse.group/t/leaving-cog-treatment-during-consolidation/908 "2023-04-04T11:45:03Z")
Hi all, my son has Neuroblastoma stage 4 MYCN amp, currently in Australia COG protocol, achieved NED end induction. Currently half way through first ASCT (consolidation) looking into transferring to SJD Barcelona once r… --- ## [DANYELZA/Naxitamab](https://nbforum.discourse.group/t/danyelza-naxitamab/890)
**Author:** [@LegendsMom17](https://nbforum.discourse.group/u/LegendsMom17)\ **Replies:** 2\ **Last updated:** [May 4, 2022, 10:57pm UTC](https://nbforum.discourse.group/t/danyelza-naxitamab/890 "2022-05-04T22:57:49Z")
Hi Everyone! Having a child with cancer is tough, however with Neuroblastoma there is no treatment specifically made for it. All treatments are like a band-aid treatment. We have tried everything. My son was diagnosed… --- ## [Honest Opinions on DFMO](https://nbforum.discourse.group/t/honest-opinions-on-dfmo/828)
**Author:** [@Lindsey\_Rosen](https://nbforum.discourse.group/u/Lindsey_Rosen)\ **Replies:** 2\ **Last updated:** [May 29, 2021, 2:22am UTC](https://nbforum.discourse.group/t/honest-opinions-on-dfmo/828 "2021-05-29T02:22:30Z")
Hi, I’m Lindsey, mom to Maci, who was diagnosed with stage 4 HR NB MYCN amp on 8/10/19 at 21 months of age. As I write this I look at my daughter napping while getting her unituxin infusion of her last inpatient cycle. M… --- ## [Bone Relapse help](https://nbforum.discourse.group/t/bone-relapse-help/706)
**Author:** [@WittCorell](https://nbforum.discourse.group/u/WittCorell)\ **Replies:** 14\ **Last updated:** [January 8, 2021, 8:59pm UTC](https://nbforum.discourse.group/t/bone-relapse-help/706 "2021-01-08T20:59:03Z")
Hi. My son relapsed in left arm 1 x 1 cm spot ( Bone ), 3 weeks later a small spot in his right leg ( Bone ) and now his legs started to hurt a little, so we of course fear the worst. We have Scans on thursay. Since … --- ## [Pilot study for chemoimmunotherapy approved at MSKCC](https://nbforum.discourse.group/t/pilot-study-for-chemoimmunotherapy-approved-at-mskcc/440)
**Author:** [@sam](https://nbforum.discourse.group/u/sam)\ **Replies:** 1\ **Last updated:** [January 8, 2021, 3:52pm UTC](https://nbforum.discourse.group/t/pilot-study-for-chemoimmunotherapy-approved-at-mskcc/440 "2021-01-08T15:52:46Z")
There is a new pilot study at MSKCC (memorial sloan kettering at NYC) for complicated relapse / refractory cases combining Hu3F8, Irinotecan/Temozolomide and Sargramostim. Hu3F8 is probably the most potent immunothera… --- ## [Allogenic transplant for Stage 4 HR Neuroblastoma](https://nbforum.discourse.group/t/allogenic-transplant-for-stage-4-hr-neuroblastoma/841)
**Author:** [@Kpks](https://nbforum.discourse.group/u/Kpks)\ **Replies:** 5\ **Last updated:** [November 11, 2020, 6:12pm UTC](https://nbforum.discourse.group/t/allogenic-transplant-for-stage-4-hr-neuroblastoma/841 "2020-11-11T18:12:46Z")
Hi Parents, Our Onco team is recommending allogenic Stem Cell Rescue with cells from Sibling or Parent. They say this has been explored in Germany and Japan. They also say, since his bone and bone marrow were affected… --- ## [Tandem transplant offers significant advantages when combined with immunotherapy](https://nbforum.discourse.group/t/tandem-transplant-offers-significant-advantages-when-combined-with-immunotherapy/201)
**Author:** [@sam](https://nbforum.discourse.group/u/sam)\ **Replies:** 8\ **Last updated:** [November 8, 2020, 5:33am UTC](https://nbforum.discourse.group/t/tandem-transplant-offers-significant-advantages-when-combined-with-immunotherapy/201 "2020-11-08T05:33:47Z")
I was reading through the submissions to ANR and found this talk: A Phase 3 randomized clinical trial (RCT) of tandem myeloablative autologous stem cell transplant (ASCT) using peripheral blood stem cell (PBSC) as cons… --- ## [Progression after radiation](https://nbforum.discourse.group/t/progression-after-radiation/647)
**Author:** [@MCJKC](https://nbforum.discourse.group/u/MCJKC)\ **Replies:** 11\ **Last updated:** [October 10, 2020, 2:12pm UTC](https://nbforum.discourse.group/t/progression-after-radiation/647 "2020-10-10T14:12:18Z")
Our 9 month old son was diagnosed Stage 4 in May 2018. He had primary tumor in the adrenal gland and secondary tumors in jaw, vertibrae, liver and probably other places I don’t recall. It’s mycn amplified and mibg non-av… --- ## [hu3F8 available in Hospital Sant Joan Déu in Spain (and other hospitals)](https://nbforum.discourse.group/t/hu3f8-available-in-hospital-sant-joan-deu-in-spain-and-other-hospitals/444)
**Author:** [@sam](https://nbforum.discourse.group/u/sam)\ **Replies:** 33\ **Last updated:** [September 24, 2020, 4:49pm UTC](https://nbforum.discourse.group/t/hu3f8-available-in-hospital-sant-joan-deu-in-spain-and-other-hospitals/444 "2020-09-24T16:49:12Z")
A note to all European NB community. Hospital Sant Joan Déu is now treating patients with hu3F8 per the MSK protocol. hu3F8 is a drug developed by MSK and manufactured by Y-mAbs There is some discussion about 3F8 he… --- ## [Incomplete resection](https://nbforum.discourse.group/t/incomplete-resection/773)
**Author:** [@Eliza1](https://nbforum.discourse.group/u/Eliza1)\ **Replies:** 7\ **Last updated:** [August 5, 2020, 11:35pm UTC](https://nbforum.discourse.group/t/incomplete-resection/773 "2020-08-05T23:35:33Z")
Hi everyone. I have been browsing (unfortunately) through this great forum and read a lot of your stories. My son has stage 4 NB mycn-amplified with incomplete resection approx 50%. Since the surgery we had radiotherapy… --- ## [Maybe spread to the lungs](https://nbforum.discourse.group/t/maybe-spread-to-the-lungs/822)
**Author:** [@Jesperbjoern](https://nbforum.discourse.group/u/Jesperbjoern)\ **Replies:** 1\ **Last updated:** [August 4, 2020, 5:01pm UTC](https://nbforum.discourse.group/t/maybe-spread-to-the-lungs/822 "2020-08-04T17:01:24Z")
Please, looking for input before meeting with our doctors. Has anyone experienced that high risk NB has spread to the lungs in connection with relapse? And be kind, don’t give us the most unfortunate stories, we can’t h… --- ## [Hu3f8-BsAb clinical trial](https://nbforum.discourse.group/t/hu3f8-bsab-clinical-trial/806)
**Author:** [@Fahiem](https://nbforum.discourse.group/u/Fahiem)\ **Replies:** 0\ **Last updated:** [April 13, 2020, 5:52pm UTC](https://nbforum.discourse.group/t/hu3f8-bsab-clinical-trial/806 "2020-04-13T17:52:36Z")
Hi, does anyone have some information about Hu3f8-BsAb trial in MSKCC? From the brief information I get, it is more potent then the previous Hu3f8 (naxitamab) because it is tageting 2 antibodies/ bispesific antibodies es… --- ## [MSK Vaccine trial experience?](https://nbforum.discourse.group/t/msk-vaccine-trial-experience/748)
**Author:** [@emma\_han](https://nbforum.discourse.group/u/emma_han)\ **Replies:** 4\ **Last updated:** [February 11, 2020, 5:15am UTC](https://nbforum.discourse.group/t/msk-vaccine-trial-experience/748 "2020-02-11T05:15:31Z")
Hi everyone Our girl just finished her immunotherapy and we are weighing the option between DFMO and MSK’s vaccine trial to prevent relapse. Does anyone have experience with the whole MSK’s vaccine trial? What we know … --- ## [MSK Vaccine to be Available in Multicenter Trials within 2020](https://nbforum.discourse.group/t/msk-vaccine-to-be-available-in-multicenter-trials-within-2020/788)
**Author:** [@spyrosnb](https://nbforum.discourse.group/u/spyrosnb)\ **Replies:** 1\ **Last updated:** [December 20, 2019, 1:51am UTC](https://nbforum.discourse.group/t/msk-vaccine-to-be-available-in-multicenter-trials-within-2020/788 "2019-12-20T01:51:23Z")
It seems that YmAbs announced FDA pre-approval for the MSK Vaccine, in order to be applied to patients who achieve remission for relapse prevention: Dr. Claus Moller, Chief Executive Officer further notes, “We are comm… --- ## [Phase 2 DFMO preventative trials](https://nbforum.discourse.group/t/phase-2-dfmo-preventative-trials/36)
**Author:** [@sam](https://nbforum.discourse.group/u/sam)\ **Replies:** 82\ **Last updated:** [November 12, 2019, 3:08pm UTC](https://nbforum.discourse.group/t/phase-2-dfmo-preventative-trials/36 "2019-11-12T15:08:05Z")
Dr. Giselle Sholler from Helen DeVos Children’s Hospital has been running a phase 2 clinical preventative trial for high risk Neuroblastoma patients. The original phase 2 trial NCT01586260 has recently closed and a new… --- ## [Is it safe to skip high dose chemotherapy and BMT](https://nbforum.discourse.group/t/is-it-safe-to-skip-high-dose-chemotherapy-and-bmt/533)
**Author:** [@Fahiem](https://nbforum.discourse.group/u/Fahiem)\ **Replies:** 14\ **Last updated:** [October 2, 2019, 1:19pm UTC](https://nbforum.discourse.group/t/is-it-safe-to-skip-high-dose-chemotherapy-and-bmt/533 "2019-10-02T13:19:37Z")
My son is diagnosed with stage IV high risk neuroblastoma, currently finishing 5 cycle of chemotherapy and surgery. To skip high dose chemo and BMT, I am planning to continue Hu3f8 treatment @ Memorial sloan kettering bu… --- ## [BEACON for relapse or alternative trials?](https://nbforum.discourse.group/t/beacon-for-relapse-or-alternative-trials/742)
**Author:** [@TWelby](https://nbforum.discourse.group/u/TWelby)\ **Replies:** 3\ **Last updated:** [July 31, 2019, 5:26pm UTC](https://nbforum.discourse.group/t/beacon-for-relapse-or-alternative-trials/742 "2019-07-31T17:26:31Z")
Hi Everyone, firstly just wanted say what a great source of knowledge and support this site is. Thank you all. I’m writing re. my 3 yo niece who was diagnosed with HR NB last September (2018). We’re in the UK, based in … --- ## [New treatment dillema](https://nbforum.discourse.group/t/new-treatment-dillema/694)
**Author:** [@Selena](https://nbforum.discourse.group/u/Selena)\ **Replies:** 1\ **Last updated:** [June 9, 2019, 11:53pm UTC](https://nbforum.discourse.group/t/new-treatment-dillema/694 "2019-06-09T23:53:13Z")
We were offered this experimental therapy. Does anyone know anything about it? A Phase I Dose Escalation Study of Autologous Expanded Natural Killer (NK) Cells for Immunotherapy of Relapsed Neuroblastoma with Dinutuxim… --- ## [Photon vs proton radiotherapy](https://nbforum.discourse.group/t/photon-vs-proton-radiotherapy/601)
**Author:** [@DanielAustria](https://nbforum.discourse.group/u/DanielAustria)\ **Replies:** 10\ **Last updated:** [April 20, 2019, 10:46am UTC](https://nbforum.discourse.group/t/photon-vs-proton-radiotherapy/601 "2019-04-20T10:46:13Z")
good evening neven! my daughter was also diagnosed early april this year wirh stage 4 and was released from HDT last sunday. she is having treatment according to SIOPEN. we researching right now possibilities which ra… --- ## [Zika virus as an oncolytic treatment of human neuroblastoma cells requires CD24](https://nbforum.discourse.group/t/zika-virus-as-an-oncolytic-treatment-of-human-neuroblastoma-cells-requires-cd24/588)
**Author:** [@Alia\_my\_niece](https://nbforum.discourse.group/u/Alia_my_niece)\ **Replies:** 1\ **Last updated:** [April 10, 2019, 4:14am UTC](https://nbforum.discourse.group/t/zika-virus-as-an-oncolytic-treatment-of-human-neuroblastoma-cells-requires-cd24/588 "2019-04-10T04:14:29Z")
--- ## [Tips for accutane treatment](https://nbforum.discourse.group/t/tips-for-accutane-treatment/188)
**Author:** [@merve](https://nbforum.discourse.group/u/merve)\ **Replies:** 9\ **Last updated:** [February 21, 2019, 10:09pm UTC](https://nbforum.discourse.group/t/tips-for-accutane-treatment/188 "2019-02-21T22:09:38Z")
hi. my son Tugberk was diagnosed at 50 days old with stage 4, intermediate risk. The primary tumor was on right adrenal gland and it had metastasized to the liver, under skin and bone marrow. He finished 6 chemoterapy ro… --- ## [Estrogen causes neuroblastoma cells to mature into neurons](https://nbforum.discourse.group/t/estrogen-causes-neuroblastoma-cells-to-mature-into-neurons/653)
**Author:** [@MCJKC](https://nbforum.discourse.group/u/MCJKC)\ **Replies:** 0\ **Last updated:** [February 20, 2019, 9:14am UTC](https://nbforum.discourse.group/t/estrogen-causes-neuroblastoma-cells-to-mature-into-neurons/653 "2019-02-20T09:14:11Z")
Estrogen and nerve growth factor (NGF) are inducers of neural differentiation, a process associated with a favorable disease. We show that MYCN suppresses estrogen receptor alpha (ERα) and thereby NGF signaling and neura… --- ## [SIOPEN vs COG vs MSKCC+?](https://nbforum.discourse.group/t/siopen-vs-cog-vs-mskcc/651)
**Author:** [@Yeo](https://nbforum.discourse.group/u/Yeo)\ **Replies:** 1\ **Last updated:** [February 19, 2019, 12:55am UTC](https://nbforum.discourse.group/t/siopen-vs-cog-vs-mskcc/651 "2019-02-19T00:55:30Z")
Discovered at six-months old, my daughter was given the COG intermediate risk treatment (without surgery). Adrenal Gland as source, with liver and bone marrow involvement; and 11q deletion. Two-years on, she suffered a … --- ## [BEACON VS HU3f8](https://nbforum.discourse.group/t/beacon-vs-hu3f8/632)
**Author:** [@WittCorell](https://nbforum.discourse.group/u/WittCorell)\ **Replies:** 2\ **Last updated:** [January 23, 2019, 10:45am UTC](https://nbforum.discourse.group/t/beacon-vs-hu3f8/632 "2019-01-23T10:45:04Z")
Hi. Im trying to figure out which one to choose, if a relapse should happen? Our Physician said if we ever came in that position, we would be enrolled in the BEACON trial. But there is a lot of talk about hu3f8. Boot… --- ## [Evaluation of Hu3F8 immunotherapy](https://nbforum.discourse.group/t/evaluation-of-hu3f8-immunotherapy/626)
**Author:** [@Kelly\_Chen](https://nbforum.discourse.group/u/Kelly_Chen)\ **Replies:** 11\ **Last updated:** [January 18, 2019, 12:51am UTC](https://nbforum.discourse.group/t/evaluation-of-hu3f8-immunotherapy/626 "2019-01-18T00:51:32Z")
Hi. My daughter is taking Hu3F8 immunotherapy as international patient in Sant Joan De Deu. After 2 cycles of medication, evaluation after MIBG scan and bone marrow test still showed one spot in the spine and the bone ma… --- ## [Progressing NB and DINUTUXIMAB](https://nbforum.discourse.group/t/progressing-nb-and-dinutuximab/611)
**Author:** [@Farman](https://nbforum.discourse.group/u/Farman)\ **Replies:** 1\ **Last updated:** [December 28, 2018, 3:13am UTC](https://nbforum.discourse.group/t/progressing-nb-and-dinutuximab/611 "2018-12-28T03:13:21Z")
Dear All! I need your advise. My daughter has NB stage 4. She had tumor in left adrenal gland, also metastases on liver, bones and bone marrow. We had 6 chemotherapies, then surgery: tumor was removed completely. After a… --- ## [Sodium Thiosulfate for Protection from Cisplatin-Induced Hearing loss (PEDMARK)](https://nbforum.discourse.group/t/sodium-thiosulfate-for-protection-from-cisplatin-induced-hearing-loss-pedmark/608)
**Author:** [@sam](https://nbforum.discourse.group/u/sam)\ **Replies:** 2\ **Last updated:** [December 20, 2018, 7:07pm UTC](https://nbforum.discourse.group/t/sodium-thiosulfate-for-protection-from-cisplatin-induced-hearing-loss-pedmark/608 "2018-12-20T19:07:51Z")
One terrifying thing about NB treatment is that it often involves a fair amount of cisplatin which in turn cause irreversible high pitch hearing loss to some of our kids. It is unfair, and you are stuck with this forever… --- ## [Our little daughter - NB stage 4](https://nbforum.discourse.group/t/our-little-daughter-nb-stage-4/555)
**Author:** [@DanielAustria](https://nbforum.discourse.group/u/DanielAustria)\ **Replies:** 9\ **Last updated:** [November 23, 2018, 5:29pm UTC](https://nbforum.discourse.group/t/our-little-daughter-nb-stage-4/555 "2018-11-23T17:29:17Z")
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 littl… --- ## [Relapse after Immunotherapy](https://nbforum.discourse.group/t/relapse-after-immunotherapy/501)
**Author:** [@MJCNY](https://nbforum.discourse.group/u/MJCNY)\ **Replies:** 5\ **Last updated:** [November 19, 2018, 6:16pm UTC](https://nbforum.discourse.group/t/relapse-after-immunotherapy/501 "2018-11-19T18:16:59Z")
Hi, my 12 year old nephew has battled neuroblastoma for just over 4 years now. After several surgeries, endless chemo/trials, it looks very likely we will lose him for good, any day now. I have read a few stories here ab… [Next page](https://nbforum.discourse.group/c/treatment-research/5.md?page=1)