Can somebody help me with that medication?
Can somebody help me with that medication?
I am thinking of doing a “immunotherapy tips and tricks” topic. We just finished our first week.
Immunotherapy (even without IL2) is a rough ride, every kid takes it a bit differently. It is very different to chemotherapy, for example, Shalev kept his appetite during treatment. We had fevers daily. Pain was mostly managed.
My son did immunotherapy with unituxin twice. The first time was the standard COG protocol of five cycles, two with IL-2. The non-IL-2 rounds weren’t too bad. The IL-2 rounds were pretty miserable. He was clearly in pain. Nauseated, too, though it’s not clear if that was from the treatment or the morphine. My son hated shots, so the GM-CSF was a challenge each time, as well.
His disease basically cleared (very good partial remission) while on this therapy. Unfortunately, a relapse was discovered during the sixth cycle (the cycle without unituxin, just accutane).
Fast forward about a year and a half and after two relapses, my son was clear again and we were trying to identify non-chemo therapies to keep him that way. We put him into a trial of unituxin and lenalidomide. No IL-2 or GM-CSF. He did several rounds of that treatment with essentially no discomfort. Much easier on him. He ultimately came off of it because during some rounds he had very elevated liver functions, and that was a trigger to disqualify him from the study. But aside from that, I hope that they determine that unituxin/lenalidomide is as effective as unituxin/IL-2/GM-CSF, as it was so much easier on him.
My son is still clear about 10 months after stopping that therapy, but I can’t say if it’s because of that therapy, because of the therapy he’s on now, or if he would have stayed clear without either or both.
Dear I’m glad that the state of your child now well and that your child
withstand all this intense battle with neuroblastoma . I can only
imagine what you’ve gone and I pray to God that this situation present
hold forever . Only the parent of a sick child to understand what it all
has to go through vicious combat . What interests me is your initial
state…when it happened , how the child was old , that stage of
neuroblastoma, n-myc amplification? And yes , it happened unfortunate
relapse who were the symptoms and who is out? Once again thank you for
your detailed reply, and I wish you all the good in the world , and to
win this terrible disease once and for all Best regards Tomislav
16.07.2016. u 15:47, Jeff je napisao/la:
It is a tough tough battle.
We are stage 3 n-myc amplified, thankfully we have been NED since after the surgery, prior to transplant. We were diagnosed in October 2015.
My son was initially diagnosed at 15 months old, stage 4, MYCN amplified, with primary tumor on his left adrenal gland, but also in his lungs, in his bones in all four limbs, and his iliac bone. The disease in his lungs was stubborn, so between the end of induction therapy and the start of transplant, we also did one cycle of MIBG therapy.
He relapsed about three months before he turned three. We learned that when he tripped and fell and hurt his left leg. Over the next couple of days seemed to be in more and more pain. Ultimately we found that he had a fracture and a new lesion at the top of his femur. Not sure if the fracture was from the fall or the lesion, but it doesn’t really matter. He had chemo and radiation that cleared it a couple of months later, then went on a trial (fenretinide) to try and keep him clear.
Unfortunately, he relapsed again after a couple of months (by now age four) with two small soft tissue masses in his pelvis discovered during routine scans. He cleared about nine months later after a trial (celecoxib/DFMO/cyclophosphamide/topotecan), surgery, radiation, and chemo (ifosfamide, carboplatin, etoposide). That brought us to late August 2014. He went on a modified version of the RIST protocol, which was suggested based on results from genetic testing of his most recent tumor. At the beginning of 2015 we switched to the unituxin/lenalidomide trial, as we wanted to get away from chemo. He came off that trial in September 2015 and has been doing off-study pembrolizumab since then.
I’ve summarized a lot, but feel free to ask any questions. I’m happy to share information on our experience.
Dear all parents
First, once again thank you for your answers. It means a lot right the
first time talking to parents who have experience with immunotherapy.
Philip, my son is with stage 3 neuroblastoma diagnosis, n - myc positive
(over 50 copies). We went to induction therapy, surgery to remove
cancer, autologous transplant, and during this month we begin with
What bothers me is that in an interview with oncologists, my son was not
planned immunoterapy. The Croatian is very difficult to demand something
beyond the scope of standard treatment. Oncologists you start avoiding
because you ask for treatments that do not apply even though the
approved drugs in Croatia after the EU directive.
This additional exhausts us is everything we had, there is no expert who
would be happy to help us in this. We feel terrible. The main oncologist
us avoid, make an appointment with us so when we get to the appointed
day, no time for us. I think that although we are part of the EU in our
heads and in the processes we are still far in the Balkans.
But we’re not giving up and we will do everything that our children
I hope that in your countries is not the situation with oncologists and
it is all at a higher level.
Any help regarding immunotherapy, especially in the EU can help
Maybe someone knows of some pilot projects that could be included
especially in Austria and Germany.
Thank you all
This trial looks very relevant, perhaps try contacting the doctors there via email?
I am a mother of a 3 yr old who has just relaped with NB NMYC amlified.
We have now just finished the first cycle of a treatment including irrinotecan/temodal/antiGD2/GMCSF.
So sorry to hear about the relapse, wishing you tons of luck.
Where are you being treated? If you are in the US I would recommend getting a genetic panel from either CHOP or MSKCC, there has been enormous amount of progress treating the ALK mutation, there are some other mutations that need more aggressive treatments, it is very important information to have.
Antibody wise, there are humanized antibodies at both MSKCC and St. Jude’s MSKCC have found hu3F8 to be significantly more effective than the older mouse based antibodies.
Additionally I am aware of a trial for bi-specific antibodies that are even more effective, which may open soon at MSKCC.
Hi Maya. I’m sorry to hear about this relapse. I know it’s an understatement, but it’s a terrifying place to be. I’m happy to answer these questions and do whatever else I can to help. I wish you the best of luck finding the right treatment for your case.
To answer your questions:
We had my son’s tumor analyzed by Foundation Medicine. They ran their Foundation One Heme testing on it. That was in July 2014, and I have not followed them to see if/how their testing has changed over the last three years, or how it compares to the testing available from specific hospitals, such as those @sam mentioned.
The unituxin/lenalidomide trial is via the NANT Consortium, which is headquartered at Children’s Hospital Los Angeles. Their information on the trial is at this link. There’s a link on that page with the email address for the study chair, Dr. Marachelian, who is also our primary oncologist. Yes, we enrolled in the trial after my son was already clear, but I believe he was the first patient without disease to be enrolled. It had initially been designed for kids with active disease. We chose it because he had been clear for a few months at that point and we wanted to try and find something that could serve as a maintenance treatment without chemo, and in our view, unituxin was as close to a proven tool as was available. As I mentioned above, the treatment was much easier on my son than the unituxin/IL-2 treatment he did previously.
No, we have not been giving him any nutritional supplements.
Please let me know if there’s anything else I can tell you or do for you. To be clear about where we are now, we stopped the pembrolizumab at the beginning of this year and have been on the BeatCC DFMO trial since February.
i’m sorry as i can see this is an old thread but i just wanted to wish good luck to your son and i wanted to ask you how is he doing now? plus i also wanted to say thanks for your post and especially for the second part i quoted. that’s because i’m also thinking to go through all of this and that’s why i wanted to say thanks plus, i wanted to ask you, if i’m going to have questions, could you guide me a bit? thanks again!
No worries at all. My son is currently doing great. As I mentioned in that same post, he’s on the BeatCC DFMO trial, coming up on 10 months. He was last scanned about a month ago and continues to be NED.
I’m happy to answer any questions that I’m able to. Reach out anytime.