Comments for NB Globe ~ Neuroblastoma News

Comment on New UK clinical trial for relapsed neuroblastoma planned by Maya

Maya — Fri, 24 May 2013 16:38:40 +0000

My nephew Filip since August 2010 he has been suffering from Neuroblastoma IV stage, N-MYC- negative, involving right suprarenal, multifocal bone lesion, bone marrow. He was treated according to the HR-NBL protocol. After Cojec therapy, NBL cells were still present in bone marrow, then he got TVD regimen (4 cycle). Subtotal (microscopic residua) resection of tumor with lymph node was done in March 2011. After we got a negative result for a bone marrow biopsy, the separation of CD34 cells and ABMT was performed (04.2011- with Bu-Mel). Radiotherapy was performed from 07.2011 to 08.2011.
During maintenance therapy with Roacutan, after two cycles he had life threatening hypercalcemia. He needed dialysis. Following that, we continued maintenance therapy as 6 cycles with Irinotecan and temodal. The treatment was finished in April 2012.
In November 2012 there was a relapse of the disease in the bone marrow and the bone of the jaw. TVD given two cycles and two cycles of ICE. There was a remission in the bone marrow.
In March 2013 was performed haploPBSCT transplant. His mother was the donor. Currently, Philip’s condition is stable.
My question is what next? What therapy can take Philip now? Thank you,
Best Regards

Comment on New UK clinical trial for relapsed neuroblastoma planned by admin

admin — Thu, 18 Oct 2012 13:27:08 +0000

Hi Ethna, Response depends on many factors, and there have not been large enough studies in relapsed children to say what the chance is for response to cis-retinoic acid. That said, there have been children who have done well in this situation, but it is impossible to predict in any particular case. Relapsing after high-risk therapy is definitely a challenge to get to remission again. There are a few trials for treating children in remission after relapse including haploidentical stem cell transplant followed by ch14.18 and IL2 in Germany (discussed here) and dendritic cell vaccine, DFMO, vorinostat and cis-retinoic acid.

Comment on New UK clinical trial for relapsed neuroblastoma planned by Ethna Kenneally

Ethna Kenneally — Thu, 18 Oct 2012 12:17:56 +0000

Hi, my 7yr old daughter relapsed, Stage III Neuroblastoma, in January 2012 also and after extensive chemotherapy and radiotherapy she is now on cis-retinoic acid to reduce a small piece of tumour remaining. Is this treatment usually successful for getting rid of neuroblastoma and if not, what’s next? Thank you

Regards

Ethna Kenneally

Comment on CNCF 2010 ~ Dr Giselle Sholler updates on NMTRC trials for neuroblastoma by DFMO Study Next Week « Ben's Blog

DFMO Study Next Week « Ben's Blog — Thu, 30 Aug 2012 02:16:44 +0000

[...] and I are off to Kansas City next week where he will (hopefully) be enrolled in the just opened DFMO study. DFMO is yet another new drug that is being looked at to fend off Neuroblastoma. Oddly, this [...]

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Comment on Tübingen 2012 Neuroblastoma Symposium: from bench to bedside by LFC Fans Rant - Ryan's appeal - PLEASE HELP!!!

LFC Fans Rant - Ryan's appeal - PLEASE HELP!!! — Fri, 15 Jun 2012 21:39:24 +0000

[...] abroad. The family aim to take Ryan to Germany for a Haploidentical Stem Cell transplant. A recent conference held in Tubingen has shown very promising results for this [...]

Comment on New oncolytic virus clinical trials listed by admin

admin — Sun, 06 May 2012 19:14:50 +0000

Dear Lillian, I am very sorry to hear about your granddaughter’s relapse. Yes, there are trials in the US and Canada, and the Canadian government has approved some children to be treated in the US. SickKids in Toronto has trials open for relapse, and is a NANT institution. That would be a good place to contact. I have emailed you privately as well. Very best wishes to you.

Comment on New oncolytic virus clinical trials listed by Lillian Kristjanson

Lillian Kristjanson — Wed, 25 Apr 2012 17:23:12 +0000

Recently my grand daughter was confirmed that her neuroblastoma relapsed. She was diagnosed in February 2009 and did well for almost 2 years after all her treatment was finished. Is there any chance she can be admitted to any trials for her cancer in Canada? And also do you accept children from Canada for any future trials? Any information would be appreciate. She started experiencing pain in her limbs in February 2012.

Comment on New UK clinical trial for relapsed neuroblastoma planned by Daniel mason

Daniel mason — Thu, 19 Apr 2012 20:23:55 +0000

Hi, my 2 year old daughter also replased in january 2012! she has stage4 NB and has recently been told that there may not be other treatment methods available for her at sheffield hospital. We are now looking to raise funds to travel abroad to try and save our daughters Life! … treatment in Germany keeps popping up when i search?? would it be possible to be sent information for sum kind of help!

Regards
Daniel mason

Comment on New UK clinical trial for relapsed neuroblastoma planned by michele

michele — Wed, 14 Mar 2012 13:56:20 +0000

hi were in germany having the il2 and anti gd2

Comment on Tübingen 2012 Neuroblastoma Symposium: from bench to bedside by Marian Moffett

Marian Moffett — Wed, 29 Feb 2012 04:57:14 +0000

Thank you fo a very user friendly summary of the conference. Your relentless pursuit of helping families save their children is magnificent. You are sucha giving, brilliant, caring and generous soul.

Marian Moffett

Comment on TWiPO #21 ~ Interview with Dr. Beatrice Lampkin by Brian Josselson

Brian Josselson — Sat, 25 Feb 2012 15:45:06 +0000

TO: NB Globe

Dr Beatrice Lampkin , i do not know the words to describe Dr. Lampkin, but she is great. In 1969 i had a cancer brain tumor, and her and team cured me, i have been in remission for over 43 years. Everyday i think how lucky i am , and again thank you Dr. Lampkin. They last time i saw Dr. Lampin was 10 years ago, i have been married for 17 years with 15 year old daughter and 11 old daughter. Dr Lampnkin if you get a chance i would like to talk to you or come see you. Again thank you and keep up the great work. also i read the cincinnati paper about the award you got Cincinnatians great people.

Thank You

Brian Josselson

770-476-3863

Comment on Temsirolimus and valproic acid trial for relapse neuroblastoma opens by Dan

Dan — Wed, 15 Feb 2012 12:00:35 +0000

As a person that has cancer I’m always intrigued about clinical trials and other new treatment methods.

Comment on New UK clinical trial for relapsed neuroblastoma planned by admin

admin — Thu, 12 Jan 2012 14:55:15 +0000

Dear Chris, I am very sorry to hear this sad news about Niamh. I am emailing you some information about relapse rationale and trials in the US. As traumatic as this all is, there is always hope.

Comment on New UK clinical trial for relapsed neuroblastoma planned by Chris Curry

Chris Curry — Thu, 12 Jan 2012 13:51:08 +0000

Hi, our 5 yr old little girl relasped in November 2011 3 days before we started Anti GD2. We are in the UK and have been told that we are now off the trail and can no longer get the Anti GD2. We are looking now to raise funds with The Neuroblastoma Alliance to take Niamh over to the US to treatment. From the research I have done we are thinking CHOP might ne the best place but we are not sure? I wondered if you could offer any advice on this to help us save our little girl.

Regards
Chris Curry

Comment on AACR 2011: A new antibody approach for neuroblastoma? by admin

admin — Thu, 29 Dec 2011 21:20:08 +0000

Great question. The clinical grade antibody has not been developed yet, that is in the works. The antibody Dr Carpenter used is one used for laboratory use (reagent) in detecting ALK expression on the surface of the cell. There may be more than one laboratory version — I saw a few different ones when I was researching the antibody. Max van Noesel did not mention which anti-ALK antibody they used for detection in their study in the abstract but the fulltext may tell which one they used. I should ask both groups what they used.

Comment on AACR 2011: A new antibody approach for neuroblastoma? by David

David — Thu, 29 Dec 2011 21:04:22 +0000

Which anti-ALK antibody was used in Dr Carpenter’s study? Something new or one of the commercially available ones? Thanks.

Comment on TWiPO #16 ~ Genetic Underpinnings of Ewing Sarcoma: Interview with Dr Stephen L. Lessnick by Laura Rutledge

Laura Rutledge — Sat, 05 Nov 2011 16:28:51 +0000

Thank you for featuring Dr. Lessnick. It was most informative. My daughter has received frontline treatment for stage IV Ewing Sarcoma and is 6 months off treatment. She has had 2 sets of clear scans. We have established a foundation to raise funds for research and awareness of AYA Sarcoma.
Helping to discover novel treatment for all Ewing patients, but most especially our own daughter is our goal. Please keep me informed of podcasts, especially related to Ewings and other AYA sarcomas.
Sincerely,
Laura Rutledge
President
Carley J. Rutledge Sarcoma Foundation

Comment on WHO SHALL LIVE AND WHO SHALL DIE? by Ben Freer

Ben Freer — Wed, 02 Nov 2011 02:51:08 +0000

Mooki, boy that hits home. I put my son on and off trials and worked handshake deals to ensure I (not a doctor) got the treatment that fit My Son Ethan. My son was diagnosed high risk NB stage 4 in Aug 08. Refractionary jan 09 Made decisions w 0032 on hold. They were the right ones so far. He is excelling in 1st grade 3 + years after dignosis. Making a fundraising speech tomorrow hope you don’t mind if I steal a few lines…so they all shall live. Thanks Mooki. Thank you Donna I owe you a call sorry. Sent from I phone.

Comment on WHO SHALL LIVE AND WHO SHALL DIE? by teri

teri — Thu, 20 Oct 2011 04:55:32 +0000

We as parents to these BEAUTIFUL children, must keep advocating, we are their only voice!

Comment on Hu3F8 is now a reality at Memorial-Sloan Kettering by Jessica Hester

Jessica Hester — Sat, 24 Sep 2011 02:37:18 +0000

Please read about how this directly impacts our daughter each and every day.

http://www.BrookeFightsBack.org

This is truly only the beginning of Hu3F8 and still has far to go which will not happen if people do not actively keep the ball rolling!! Thank you to Band of Parents and all the love before us and after us that WILL make this happen!!

The Hester Family,
Beau, Jessica, and Brooke

Comment on Dr Giselle Sholler accepts new position at Van Andel Research Institute by Melina’s White Light Neuroblastoma Walk To Raise Money For Kids Cancer Research - The New 96.1 Joy FM - Today's Lite Hits

Fri, 17 Jun 2011 09:40:06 +0000

[...] is sponsored by Melina’s White Light. 100-percent of the money raised will go directly to Dr. Giselle Sholler for her research on neuroblastoma. You can also find the group on facebook at Melina’s [...]

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Comment on TWiPO #3 ~ Vincristine Pharmacogenetics, Irinotecan/Temozolomide for Relapsed Neuroblastoma by admin

admin — Wed, 04 May 2011 15:02:04 +0000

Yes, absolutely. You can subscribe via iTunes, or you can subscribe to this podcast feed: http://feeds.feedburner.com/nbglobe/twipo Thanks so much for listening!

Comment on TWiPO #3 ~ Vincristine Pharmacogenetics, Irinotecan/Temozolomide for Relapsed Neuroblastoma by Chris

Chris — Wed, 04 May 2011 10:42:34 +0000

Hi!

I’d really like to subscribe to the podcast, and as and Android rebel, I’ really like an unique rss feed with only the podcast, maybe you can arrange that?

Really interesting show, much appreciation! Found you via TWiM!

/Chris

Comment on Webinar on oncolytic viruses for children by Gregory Kelly

Gregory Kelly — Mon, 07 Feb 2011 16:48:21 +0000

The presentation was wonderful. As a parent of a 4 yr old, stage IV relapsed (we think) patient, our hope has been for a treatment similar to one of the viruses mentioned. There are so many limitations to existing treatment. As parents, we are looking for something different. We are looking for something different because the same-old doesn’t do it for many of these children.

I hope and pray that the trials will progress at a diligent pace, as I truly feel that a viral route could be a solution for many of the affected NB children.

Thank you so much to all involved with the presentation, as well as to all of the researchers.

Comment on Rational relapse therapy for neuroblastoma by Brad McLean

Brad McLean — Fri, 31 Dec 2010 11:56:11 +0000

Great write-up, Donna. I would include some of your comments at the beginning of this blog post – in the chapter. Great work.

Comment on Rational relapse therapy for neuroblastoma by Chris German

Chris German — Sun, 26 Dec 2010 22:41:24 +0000

Great article. Our daughter is currently being treated for S4NB and has just finished her 6th round of chemo after having a complete resection of her primary tumor. Even though we haven’t yet finished our treatment, I am beginning to think about the potential of relapse and plausible trigger factors. I’ve read about a possible link between chlordane and NB. We live in an old house so we’ve decided to install a constant air-exchanger in order to remove chlordane vapors and hopefully help prevent future disease.

Comment on SIOP 2010 ~ Worldwide Childhood Cancer by AJs Dad

AJs Dad — Fri, 17 Dec 2010 13:42:39 +0000

Thank you. Please keep writing.

Comment on New vaccine trial for relapsed neuroblastoma by admin

admin — Fri, 19 Nov 2010 15:22:31 +0000

Good question. The eligibility states “Patient may have gross tumor that has been treated with multi-agent chemotherapy prior study entry” which indicates refractory disease is allowed. I contacted the PI for more information about this trial but have not heard back yet–you can ask the PI directly (contact information is on the trial listing at http://clinicaltrials.gov/ct2/show/NCT01241162).

Comment on New vaccine trial for relapsed neuroblastoma by Terri Knowles

Terri Knowles — Fri, 19 Nov 2010 14:57:39 +0000

Explain, please, what is relapsed mean in this situation? Could this possibly be used for a child who rounds of chemo “didn’t” work or not? Very curious.

Comment on SIOP 2010 ~ Next week in Boston by Patrick Lacey

Patrick Lacey — Fri, 15 Oct 2010 13:59:06 +0000

Some great topics to be covered…wish I could catch some of them

Comment on SIOP 2010 ~ Next week in Boston by Natasha Moraes

Natasha Moraes — Fri, 15 Oct 2010 06:21:09 +0000

WOW Donna, how are you going to fit all of that in?? LOL

Of course, I cannot wait to read your reports. You are the true CHAMPION for all of warriors and Angels )

If you happen to get any info on the 2 different siblings with cancer topics, I’d love ot read them.

xxx

Tash

Comment on New vaccine trial for relapsed/refractory neuroblastoma in combination with metronomic chemotherapy by gill nunn

gill nunn — Fri, 01 Oct 2010 23:35:11 +0000

Hello.I have been told today that sadly my 18 year old son has relapsed. We are keen to look at all treatment options, wherever they may be. Please could you advise me of any trials that would be open to him as a UK resident.
Thank you

Comment on ASCO 2010 & ANR 2010 ~ Survival after neuroblastoma relapse by Ben

Ben — Tue, 20 Jul 2010 02:46:46 +0000

I have also heard of the wonderful fellow that relapsed after 13.5 years. The rumor is his mother is still doing great things for kids with Neuroblastoma. Keep it up.

Comment on ANR 2010 ~ UK group reports on long-term survival with persistent neuroblastoma by Patrick Lacey

Patrick Lacey — Sat, 17 Jul 2010 15:09:12 +0000

Thank you for this post (and the text) Donna!

pat

Comment on ASCO 2010 ~ Days 1 & 2 by lisa higgins

lisa higgins — Fri, 16 Jul 2010 04:26:44 +0000

Hi Donna, excellent website – it’s way passed my bedtime and I’m still reading….

In the UK high risk children are randomized to either ch14:18 and IL2 (given subcut to my knowledge) OR ch14:18 alone.

I am sure other UK families will clarify this.

Lisa Higgins
Robyn Higgins NB IV May 09 Royal Marsden UK
just completed ANBL0032 at CHOP

Comment on ASCO 2010 ~ Abstract impact and drugs for neuroblastoma by Andy Mikulak

Andy Mikulak — Mon, 12 Jul 2010 21:44:33 +0000

First, and you know this already Donna, but you are doing an amazing service to the entire childhood cancer community – not just neuroblastoma – in undertaking this new mission of yours.

Two quick comments/observations:
1. re: pemetrexed. I cannot understand how pemetrexed gets used as a single agent in a COG-sponsored phase II trial. In my opinion, agents that display so little efficacy in lab/phase I study as did pemetrexed should never get to a phase II trial.
2. re: perifosine. It is refreshing to hear Oren surface the acknowledgment that “markets” exists for clinical trials. I think it is both a moral imperative, as well as smart use of expensive resources for a PI to shut down a study which fails to gain traction amongst its intended patient population.

Blessings,
Andy

Comment on ANR 2010 ~ Days 1 & 2 by Caryn Franca

Caryn Franca — Thu, 24 Jun 2010 13:55:32 +0000

I just love you!!!!!!!! Data Donna you are absolutely the most wonderful advocate and reporter… Erik is giving you the thumbs up for sure!! Thanks for your info!!!

Comment on ASCO 2010 ~ Days 1 & 2 by gregkel

gregkel — Tue, 08 Jun 2010 13:25:17 +0000

Hi Donna,
We love the site, and think it is a great idea. My question is if there has been any discussion of current or forthcoming talk of vaccine success. We will soon be approaching time to make a decision on vaccine trials, and I’m looking for some guidance or early speculation of effectiveness.
Thanks you so much for the site. It is wonderful that you are able to continue the fight. We think of you guys daily.
The Kellys