Comments for NB Globe ~ Neuroblastoma News http://www.nbglobe.com A Neuroblastoma News Report Thu, 12 Jan 2012 14:55:15 +0000 hourly 1 Comment on New UK clinical trial for relapsed neuroblastoma planned by admin http://www.nbglobe.com/2011/11/07/new-uk-clinical-trial-for-relapsed-neuroblastoma-planned/comment-page-1/#comment-229 admin Thu, 12 Jan 2012 14:55:15 +0000 http://www.nbglobe.com/?p=480#comment-229 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. 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 http://www.nbglobe.com/2011/11/07/new-uk-clinical-trial-for-relapsed-neuroblastoma-planned/comment-page-1/#comment-228 Chris Curry Thu, 12 Jan 2012 13:51:08 +0000 http://www.nbglobe.com/?p=480#comment-228 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 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 http://www.nbglobe.com/2011/04/08/aacr-2011-a-new-antibody-approach-for-neuroblastoma/comment-page-1/#comment-227 admin Thu, 29 Dec 2011 21:20:08 +0000 http://www.nbglobe.com/?p=338#comment-227 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. 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 http://www.nbglobe.com/2011/04/08/aacr-2011-a-new-antibody-approach-for-neuroblastoma/comment-page-1/#comment-226 David Thu, 29 Dec 2011 21:04:22 +0000 http://www.nbglobe.com/?p=338#comment-226 Which anti-ALK antibody was used in Dr Carpenter's study? Something new or one of the commercially available ones? Thanks. 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 http://www.nbglobe.com/2011/10/07/twipo-16-genetic-underpinnings-of-ewing-sarcoma-interview-with-dr-stephen-l-lessnick/comment-page-1/#comment-220 Laura Rutledge Sat, 05 Nov 2011 16:28:51 +0000 http://www.nbglobe.com/?p=459#comment-220 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 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 http://www.nbglobe.com/2011/10/16/who-shall-live-and-who-shall-die/comment-page-1/#comment-219 Ben Freer Wed, 02 Nov 2011 02:51:08 +0000 http://www.nbglobe.com/?p=466#comment-219 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. 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 http://www.nbglobe.com/2011/10/16/who-shall-live-and-who-shall-die/comment-page-1/#comment-217 teri Thu, 20 Oct 2011 04:55:32 +0000 http://www.nbglobe.com/?p=466#comment-217 We as parents to these BEAUTIFUL children, must keep advocating, we are their only voice! 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 http://www.nbglobe.com/2011/09/05/hu3f8-is-now-a-reality-at-memorial-sloan-kettering/comment-page-1/#comment-215 Jessica Hester Sat, 24 Sep 2011 02:37:18 +0000 http://www.nbglobe.com/?p=448#comment-215 Please read about how this directly impacts our daughter each and every day. 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 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 http://www.nbglobe.com/2011/04/03/dr-giselle-sholler-accepts-new-position-at-van-andel-research-institute/comment-page-1/#comment-204 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 http://www.nbglobe.com/?p=334#comment-204 [...] 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 [...] [WORDPRESS HASHCASH] The comment's server IP (50.56.3.17) doesn't match the comment's URL host IP (184.106.43.246) and so is spam. [...] 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 [...]

[WORDPRESS HASHCASH] The comment’s server IP (50.56.3.17) doesn’t match the comment’s URL host IP (184.106.43.246) and so is spam.

]]> Comment on TWiPO #3 ~ Vincristine Pharmacogenetics, Irinotecan/Temozolomide for Relapsed Neuroblastoma by admin http://www.nbglobe.com/2011/04/25/twipo-3-vincristine-pharmacogenetics-irinotecantemozolomide-for-relapsed-neuroblastoma/comment-page-1/#comment-198 admin Wed, 04 May 2011 15:02:04 +0000 http://www.nbglobe.com/?p=368#comment-198 Yes, absolutely. You can subscribe via iTunes, or you can subscribe to this podcast feed: <a href="http://feeds.feedburner.com/nbglobe/twipo" rel="nofollow">http://feeds.feedburner.com/nbglobe/twipo</a> Thanks so much for listening! 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 http://www.nbglobe.com/2011/04/25/twipo-3-vincristine-pharmacogenetics-irinotecantemozolomide-for-relapsed-neuroblastoma/comment-page-1/#comment-197 Chris Wed, 04 May 2011 10:42:34 +0000 http://www.nbglobe.com/?p=368#comment-197 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 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 http://www.nbglobe.com/2011/01/26/webinar-on-oncolytic-viruses-for-children/comment-page-1/#comment-173 Gregory Kelly Mon, 07 Feb 2011 16:48:21 +0000 http://www.nbglobe.com/?p=311#comment-173 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. 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 http://www.nbglobe.com/2010/12/26/rational-relapse-therapy-for-neuroblastoma/comment-page-1/#comment-166 Brad McLean Fri, 31 Dec 2010 11:56:11 +0000 http://www.nbglobe.com/?p=304#comment-166 Great write-up, Donna. I would include some of your comments at the beginning of this blog post - in the chapter. Great work. 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 http://www.nbglobe.com/2010/12/26/rational-relapse-therapy-for-neuroblastoma/comment-page-1/#comment-163 Chris German Sun, 26 Dec 2010 22:41:24 +0000 http://www.nbglobe.com/?p=304#comment-163 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. 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 http://www.nbglobe.com/2010/12/14/siop-2010-worldwide-childhood-cancer/comment-page-1/#comment-159 AJs Dad Fri, 17 Dec 2010 13:42:39 +0000 http://www.nbglobe.com/?p=287#comment-159 Thank you. Please keep writing. Thank you. Please keep writing.

]]> Comment on New vaccine trial for relapsed neuroblastoma by admin http://www.nbglobe.com/2010/11/19/new-vaccine-trial-for-relapsed-neuroblastoma/comment-page-1/#comment-147 admin Fri, 19 Nov 2010 15:22:31 +0000 http://www.nbglobe.com/?p=292#comment-147 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). 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 http://www.nbglobe.com/2010/11/19/new-vaccine-trial-for-relapsed-neuroblastoma/comment-page-1/#comment-146 Terri Knowles Fri, 19 Nov 2010 14:57:39 +0000 http://www.nbglobe.com/?p=292#comment-146 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. 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 http://www.nbglobe.com/2010/10/15/siop-2010-next-week-in-boston/comment-page-1/#comment-131 Patrick Lacey Fri, 15 Oct 2010 13:59:06 +0000 http://www.nbglobe.com/?p=273#comment-131 Some great topics to be covered...wish I could catch some of them Some great topics to be covered…wish I could catch some of them

]]> Comment on SIOP 2010 ~ Next week in Boston by Natasha Moraes http://www.nbglobe.com/2010/10/15/siop-2010-next-week-in-boston/comment-page-1/#comment-130 Natasha Moraes Fri, 15 Oct 2010 06:21:09 +0000 http://www.nbglobe.com/?p=273#comment-130 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 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 http://www.nbglobe.com/2010/09/02/new-vaccine-trial-for-relapsedrefractory-neuroblastoma-in-combination-with-metronomic-chemotherapy/comment-page-1/#comment-125 gill nunn Fri, 01 Oct 2010 23:35:11 +0000 http://www.nbglobe.com/?p=254#comment-125 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 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 http://www.nbglobe.com/2010/07/18/asco-2010-anr-2010-survival-after-neuroblastoma-relapse/comment-page-1/#comment-26 Ben Tue, 20 Jul 2010 02:46:46 +0000 http://www.nbglobe.com/?p=217#comment-26 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. 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 http://www.nbglobe.com/2010/07/16/anr-2010-uk-group-reports-on-long-term-survival-with-persistent-neuroblastoma/comment-page-1/#comment-25 Patrick Lacey Sat, 17 Jul 2010 15:09:12 +0000 http://www.nbglobe.com/?p=216#comment-25 Thank you for this post (and the text) Donna! pat Thank you for this post (and the text) Donna!

pat

]]> Comment on ASCO 2010 ~ Days 1 & 2 by lisa higgins http://www.nbglobe.com/2010/06/05/asco-2010-day-1-2/comment-page-1/#comment-21 lisa higgins Fri, 16 Jul 2010 04:26:44 +0000 http://blog.prcomputerhelp.com/?p=132#comment-21 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 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 http://www.nbglobe.com/2010/06/14/asco-2010-abstract-impact-and-drugs-for-neuroblastoma/comment-page-1/#comment-20 Andy Mikulak Mon, 12 Jul 2010 21:44:33 +0000 http://blog.prcomputerhelp.com/?p=178#comment-20 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 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 http://www.nbglobe.com/2010/06/23/anr-2010-days-1-2/comment-page-1/#comment-6 Caryn Franca Thu, 24 Jun 2010 13:55:32 +0000 http://www.nbglobe.com/?p=196#comment-6 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!!! 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 http://www.nbglobe.com/2010/06/05/asco-2010-day-1-2/comment-page-1/#comment-4 gregkel Tue, 08 Jun 2010 13:25:17 +0000 http://blog.prcomputerhelp.com/?p=132#comment-4 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 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

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