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 radiation she should receive (traditional or proton), also what to do during or after IT.
what is your story, what are you exploring???
it seems we have the the same treatment-periode.
thanks and best regards from austria!
good evening neven!
Phase 2 DFMO preventative trials
Apologies I split this to a new topic cause I feel we should really have a photon vs proton therapy topic.
My understanding from various discussions with oncologist is that the preference of photon vs proton is heavily dependent on tumour location. In general if the mass is lower they prefer to use photon cause they feel there is benefit from the additional spread.
I would be very careful about thinking that proton is unconditionally better, for some cases it is undeniably better for others it is not, and in some cases its the flip of a coin.
Good luck with Radiotherapy, highly recommend you read through Staying still during radiotherapy
good evening sam,
thank you for your answer and the new topic.
finally we have decided for proton radiation, it is also recommended by our oncologists because of less side-effects but same results, insurence take higher costs over too.
we start 17.12. exactelly 60 days after BuMel.
a short report will follow when finished.
br from austria jindrich
Our Radiation team recommended Proton, due to the location of my sons tumor. His tumor was located by the spine.
We finished radiation therapy 1. December 2018 in Houston, Texas - MD. Anderson. 14 cycles.
We are from Copenhagen, Denmark - and we dont have Proton herre yet, so they send us to Texas. Very happy with it, went very well.
Our 5 year old son was diagnosed with S4 HR NBL n.mycn. He was cleared in MIBG just before Christmas.
We are also looking at options to post SIOPEN treatment. We are talking to Dr. Scholler at the moment about DMFO, but we need our doctors to accept to do the scannings at home, otherwise you are looking at a bill in the area of 220.000 dollars.
We finish immunotherapy in april.
I have read your message and it seems we are in the same situation, our daughter is right in this minute treated with proton-radiation and finish this treatment here in wiener neustadt 29.1.2019.
I have contacted dr scholler in november and it seems the costs could be covered by our insurance as dr scholler would accept scans done here in salzburg/austria.
I have spoken to some leading physicians from germany and austria and they recommend DFMO because of low side-effects, but they are not very happy about MSK’s vaccine as MSK does not provide officialy deep informations about this.
we start IT in 6 weeks according to SIOPEN.
what have you found out regarding MSK or spain???
Yes, sounds like we are on the same page.
Dr. Sholler is looking at our papers this week - and hopefully she will accept our son, and letting us do the scans at home.
Do you know what the criteria is for them to accept Scans at home?
Would you mind giving me the names on the physicians that recommend DFMO. You are welcome to email me them on dcorell( at )gmail.com if you dont want them out here.
We gonna have a talk with our Physician tommorrow, and need him onboard. He is curious and agree that the numbers out there is promissing. He would talk to some of his former collegues in UK about it.
Nice that your insurrance will cover your cost. We would have to pay ourself as its a trial, and nothing our hospital is part of.
I havent looked into MSK vaccine as there is limited information, and have read that it is very very expensive and you cannot do scans at home. We would not have time enough to fund that kind of money. its surreal to be in a situation like that.
Dont think Spain is doing the vaccine or other maintainance treatment - i might be wrong?
Looking forward to hear from you.
we can do the scans at home it seems, our physician (dr. neil jones)
from landeskrankenhaus salzburg get in touch with dr. scholler and try
to figure out when the scans has to be done, as we have to anyway go
thru controlls and that could go in one line.
that would mean that the insurance pay for the scans at home and the
remaining costs for DFMO (flights etc.) are than more manageable for us
and we could have space for possible insurance cover for the vaccine,
hopefully, that is our plan.
I am in contact with dr. kushner and his team and await the estimated
costs next week for bivalent vaccine, but I have to say that some very
known physicians from germany are not very excited about the vaccine as
they do not know the effectiveness and would rather recommend DFMO.
I was told from kushner that the vaccine must be taken after antibody
therapy which should be done 1.7.2019, right now we are on radiation
therapy in austria (proton) and start with accutane 4.2.2019 as well
with ch.14.18 short after.
regarding spain, you wrote that copenhagen is offering hu3f8 like spain too?
can you supply me with details? I haven’t found anythink in denmark.
look forward to hear from you!
We just got approved yesterday by Dr. Sholler, and do the scans at home. As you say, then its more economic manageable.
Our Phyician is onboard, but need to clear it with management, before final OK. Dr. Sholler and our Physician will arrange a phonecall meeting soon.
As far as I know, you need to do the Vaccine before DFMO - you can not do it the other way around. Please let me know the estimated cost of the Bivalent vaccine.
Rigshospitalet in Copenhagen, Denmark is now part of the Hu3f8 trial. That is our Hospital.
https://clinicaltrials.gov/ct2/show/NCT03363373 If you look at this link, further down you can see the list of hospitals that do the trial. Naxitamab is just another name for Hu3f8.
We just talked to our physician today what would happen in case of relapse. At our hospital they go strait to the BEACON trial. did’nt have time enough to talk about choosing one over the other. but thankfully that is only theoretical at this point. But it looks like we have access to Hu3f8 if it happens - and then it would be free of cost for us.
we got back from wiener neustadt in austria where our daughter had 14x proton radiothetapy (21g), all sessions she was sedated.
we were pretty surprised about the services they offer, we had a 50 sqm appartment right behind the institution and got warm meals from the hospital near by for each of us (2kids 2adults). For our older boy they organized playstation with newest games in the playcorner while his sister was radiated. Mineralwater and fruits were costless. The approach was quite personalized and
all physicians were super nice as well.
about the therapy: for NB proton-radiation works very well, there is no difference between effectivness but in the side-effects. The beam does not broaden much, stays focused on the tumor shape, and delivers only low-dose side effects to surrounding tissue. All protons of a given energy have a certain penetration range, very few protons penetrate beyond that distance. Furthermore, the dose delivered to tissue is maximized only over the last few millimeters of the particle’s range.
we feel that physicians thinks traditionally and offer photon to keep the patients inside their institution, also it is a matter of access of proton-radiation and it is more than double in costs. All parents we met there (from israel, germany, hungary…) told us they had to fight for this therapy, even their physicians did not tell them that proton is pretty much well-tolerated. Unfortunatelly proton is not established in the heads of physicians but should be especially for our kids. Since 2017 it has to be fully covered by the insurance here in austria!
all the best to all of you!
jindrich & family
We were sent to Houston, Texas from Denmark to get Proton, because the Radiation team here looked at our case and told us, that he would benefit the most from Proton.
They always do that here in Denmark. There is about 50-80 children and adults sent to Houston each year as we only have Photon - until just now.
Two weeks ago, a brand new Proton clinic opened in Denmark with 3 radiation rooms with a capacity of 1100 persons a year.
Here is the link to “Outcomes After Proton Therapy for Treatment of Pediatric High-Risk Neuroblastoma”: https://www.sciencedirect.com/science/article/pii/S0360301619301907