Dear
Stephen and all,
I have a
question concerning my friend’s daughter. She is a Spanish 11 year old girl.
She has been diagnosed with a grade IV medular glioma. She had surgery, but the
tumor could not be removed. They just took a biopsy. She has had 30 sessions of
radiation and 27 days of temozolomide. Parents are desperatly looking for
possible clinical trials that would fit her case. Any suggestions on specific
treatments or cocktails would be of much help as well. Even though they live in
Spain they would have no problem travelling overseas. We are attaching
pathological report, MRI and tractography report.
Please click on the following link. Once the link takes you to the page of the girl's medical information, click on "Visualizar el estudio" to see her images and "Descargar el informe" to read the medical report:
http://resultados.healthtime.es/PortalPaciente/OpenSharedStudyRequest/a4ac550a-19f7-4d58-99ad-6e1fb2e06ccb
The picture I am including is the report of the pathologist. It is in Spanish, but I think it is understandable. If you have any questions, please contact me.
Thank you all in advance.
Isabel
Not sure if she might be eligible for this trial in Spain. Perhaps not if her tumor is not technically a DIPG (diffuse intrinsic pontine glioma), but it might be worth reaching out to these doctors regardless.
ReplyDeletehttps://clinicaltrials.gov/ct2/show/NCT03178032
Clinica Universidad de Navarra Recruiting
Pamplona, Navarra, Spain, 31190
Contact: Jaime Gallego, MD, PhD 948255400 jgallego@unav.es
Contact: Jose Maria Galindo 948255400 ext 2527 jgalindom@unav.es
Also this trial in Germany, though this would require a tumor resection to obtain tissue to make a tumor lysate.
https://clinicaltrials.gov/ct2/show/NCT03879512
Thank you so much!
ReplyDeleteHi Isabel,
ReplyDeleteI am not sure if it is an option for the family, but if they would also be willing to consider a private cancer clinic I can personally recommend IOZK in Cologne, based on my own experience. They specialize in a multimodal treatment approach, including immunotherapy / virotherapy / hypothermia.
One of the doctors there - Dr. van Gool - is specialized in pediatric patients, and is well known in the immunotherapy field. As a private institution, treatment there may or may not be covered by insurance, case by case (in my case it is).
Just wanted to provide another option, in case it is useful... I have personally been a patient at this clinic for almost two years now, with in my case good results and a very good experience.
https://www.iozk.de/en/contact/
Best,
John
Dear John, could you please tell me in more details about your treatment in IOZK, because we are thinking about it. What did they do? How much was the treatment? Did it shrunk your tumor?
DeleteThank you!
Hi Irina,
DeleteAssuming you have access to the Brain Tumor Library database, here is a useful link with some info on the German cancer clinics incl. cost:
https://docs.google.com/document/d/1vWWyyikbw3_Ba8FAqLXEbyT6EnQGg4L5U4RsO2EmGgA/edit
The absolute cost will depend how often you go to the clinic for NDV booster treatments (in my case, every 6 weeks presently), and also on the precise treatment intensity (e.g. how many days of treatment in each booster cycle), as well as a few other factors. As with all things cancer treatment, it does not come cheap unfortunately.
I believe IOZK offers a few different treatment modalities - however, in my case the treatment has 3 key components:
1. Dendritic Cell based vaccination, which was performed leveraging liquid biopsy (i.e. from blood only, as I had no frozen tumor material); these vaccinations are only given as required, and in my case have not had to be repeated since the beginning.
2. NDV based oncolytic virotherapy; in a nutshell, this virus is harmless to normal cells but enters and multiplies in tumor cells, attacking the tumor and simultaneously making it more visible to the immune system. The NDV treatment is repeated every few weeks, in my case every 6 weeks. It involves a simple harmless injection, and is given several days in a row (in my case, each cycle I visit the clinic 5 days in a row). No side effects.
3. Local hypothermia treatment; basically, the local tumor area is heated for approx 1 hour via a type of machine / bed combination one lies on. This is done each time in combination with the NDV treatment.
As to the effectiveness, I think the advantage of this approach is that it gives you an ongoing treatment option which is completely non-toxic and side effect free. Plus the IOZK clinic environment certainly beats the often poor/unfriendly hospital environments one frequently faces as a cancer patient... everyone is very friendly here and the treatment is very good/friendly.
I can never be sure if this particular treatment has been effective for me, or whether it was another element or combination of elements in my treatment cocktail, as I'm simply doing too many things to be able to pin it down to anyone thing. But I am at present almost 23 months progression free, for what it is worth, and this without any chemotherapy cycles apart from the initial concomitant low dose Temodal / radiotherapy schedule. However, I am also on an extensive med & supplement cocktail and generally do my best to be healthy in mind and body. Still, my gut feeling is that the therapy at IOZK has been a critical component for my positive evolution so far.
Best,
John
Dear John! Thank you so much for the answer!
DeleteJust one more question, did you give full resection of the tumor?
Hi Irina - I did have a fairly total resection of the tumor at sugery, but unfortunately this was not kept frozen by the hospital. As a result, I got a vaccine at IOZK based on a liquid biopsy approach (i.e. via blood only). So to your question, I did not give any tumor material at all to IOZK, but I know they can also make a tumor lysate based vaccine if you are able to provide a tumor sample.
DeleteBest,
John
Hola Isabel, hay un grupo e facebook que se llama glioblastoma en España, podéis uniros. No hay pacientes pediátricos pero se comparte información y a lo mejor os es útil
ReplyDeleteHello Isabel, there is a facebook group named "Glioblastoma en España" where you can find info about it.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteHi all,
ReplyDeletewhat do you think about ONC201? I read some promising stories about it for the present mutations:
https://medicalxpress.com/news/2018-12-cancer-therapy-brain-tumors.html
All the best!
ONC201 is being tested in H3F3A K27M mutated diffuse midline gliomas. This mutation is regarded as being a biomarker of potential response to ONC201. The pathology report of the 11 year old girl said (in Spanish) that this mutation was not detected. I was thinking about ONC201 for this case as well until I read the pathology report.
DeleteDid they send the biopsy sample out for any genetic testing? The pathology report is not very detailed. So without more complete genetic testing or a more specific diagnosis it will be hard to determine the best treatments or trials to try and gain access to.
ReplyDeleteMY mom was diagnosed in 2013 April with Grade 3 inoperable Astrocytoma,She is currently doing ok and on Avastin on a monthly cyvle, In 2013 we went through the 32 sesions of radiotherapy and futher 3 sessions of cyberknife..let me tell you from my experience that after radiation is the time when the maximum number of convulsions can occur because the brain still recovering from the radiation and tumor area is considered hot...in the mean time there will be a significant buildup of Edima in the brain, to counter it, Chemotherapy cycles would be recommended to reduce the edema, Most probarbly a cocktail of chemo, I would strongly suggest to stick to those regimen strictly and also strongly suggest Longvida Curcumin to ba taken before sleep, I have noticed from my experience it contributes to reduce swelling in the brain, if you would like more information Incan be contacted at karan1000@gmail.com
ReplyDelete