3F8 monoclonal antibody study at Sloan Kettering


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03-11-10 01:48 AM
3F8 monoclonal antibody study at Sloan Kettering

Our son is supposed to begin this new, investigational treatment at Sloan Kettering at the end of the month and I was wondering if anyone has had this?  What types of side-effects, how bad were they, did you do it out-patient, etc.  Any info from anyone would be great.  I am just making sure I am making the right decision.  He just finished his bone marrow transplant and has only been home a week now, and Dr. Kushner from Sloan wants him there the end of the month to begin.  Colby is currently showing no evidence of disease and after him going thru that aweful transplant, I have hesitations on this antibody treatment.  I just feel so bad putting him thru more stuff so soon after. 

So please, if you have any experience with this with your child, please let me know your thoughts and how things went.  I would really appreciate it.



03-13-10 03:22 PM
Re: 3F8 monoclonal antibody study at Sloan Kettering

 Hi Kris

My son has received 2 rounds of 3F8 antibodies at MSKCC but has now HAMA'd. Joshua has been receiving his main treatment in the UK since he was diagnosed at 6 months old. At the time, the UK didn't have antibodies so we had no choice but to come to New York. The antibodies are administered on an outpatient basis and to be honest, Joshua has coped very well with them. I won't lie, I found the first day of antibodies horiffic and and seriously had second thoughts but he bounces back so quickly and is fine by the next morning and each cycle gets easier to cope with. The nursing staff who do the antibodies are FANTASTIC.I am not aware of any new specific trial usingthese antibodies, my understanding is that once the children are NED they can commence this treatment.

Has Dr Kuschner told you if anything else is involved? I'm just wondering if it's a different study/trial to the one my son is on. The course he is on is antibodies for 5 days every month for the first 2 months then it goes to every 8 weeks. He has GMCSF injections starting on the Wednesday before the start of each 3F8 cycle (they always start on a Monday). If this is a different trial I'd be very interested to hear about it myself.

Because the UK's protocol differs to the US ( 70 days chemo, surgery, high dose chemo, transplant, radiotherapy, Accutane) most children from the UK develop an early HAMA which is the position we're in now. We were at MSKCC last month where Joshua received the retuximab and cyclophosphamide which we're hoping will bring his HAMA down although HAMA blood test this week shows that he is still HAMA positive.

We don't have a caring bridge site but we have a facebook group: The Joshua Deller Appeal - Help Me Beat Neuroblastoma Cancer

I wish you all the luck in the world and may even bump into you at the RMDH or MSK! 

Best wishes


03-13-10 11:44 PM
Re: 3F8 monoclonal antibody study at Sloan Kettering

Have you thought about ch-14-18 antibody? Many doctors think it is a better antibody for transplant patients.

03-14-10 08:36 PM
Jennifer Click
Re: 3F8 monoclonal antibody study at Sloan Kettering

Hi Kris,

Have you had a chance to read the chapter on coping w/3F8 treatment in the NB Handbook:


I know it is tempting to stop treatment after transplant when your child is NED, but now really is not the time to stop.  NED doesn't necessarily mean the cancer is all gone, only that we don't have scans sensitive enough to find the very small amounts that are still there -- many docs believe this microscopic disease is one reason NB has such a high relapse rate.  Antibody treatments can "mop up" this disease and give the kids a better chance of staying in remission.

The 3F8 treatments are tough -- there is no denying that.  But they are so much better than chemo.  The kids usually have pain for 30 to 60 minutes, and they get lots of pain meds for that.  After a few hours to sleep the meds off they are up and running around the Ronald McDonald House playing and having fun -- it truly is incredible how they bounce back! 

The other good thing about 3F8 is when you leave clinic at the end of the week you are done until the next round (about 3 weeks later).  No shots, no fever, no neutropenia, no trips to the hospital -- the kids get to go home and be KIDS!

Also, don't concerned about 3F8 being an "investigational" drug. If Colby is NED and getting it after transplant it is not very "new" -- they might have a new dose or some other little tweak, but 3F8 has been around as a Phase II clinical trial for a while. The Sloan-Kettering docs won't do a phase III trial of 3F8 because they would have to deny some kids the treatment and they don't want to do that. My daughter had 3F8 at Sloan-Kettering 7 years ago and I am convinced it is why she is till here today -- a happy, healthy fifth grader.

I hope this helps set your mind at ease some,

Jen (Mom of Carolyn dx stage iv NB Jan. 2003, NED July 2003, off-treatment Oct. 2004 -- 7 year event-free survivor)


I saw on Colby's site that you are from Madera (I grew up in Bakersfield).  Be sure to contact Corporate Angel Network and see if they can hook you up with free flights on private, corporate-owned jets.  We traveled with them for 5 years and it was great!

03-15-10 01:48 PM
Re: 3F8 monoclonal antibody study at Sloan Kettering

Have to chime in and agree in spades with Jen! Even though it is a really, really rough treatment, as a mom who has lost a child to nb, I can say how much I wish antibodies (particularly ch 14.18) had been possible for our son. 

NED means only no EVIDENCE of disease...not no disease. Our hospital doesn't even use the term "remission" for nb. It is so vitally important to keep on with treatment, even difficult treatment, because the relapse rate for high-risk nb is so incredibly high. And delaying the start of antibody treatment may decrease the effectiveness of it. 

Also, if I can say this without sounding too negative, if your son does happen to relapse, you don't want to have to face the guilt of "maybe we could have prevented this." You will NEED to know that you did all you could. 

Praying for peace for you in your decisions...