Hi folks,
My mother is a grade 4 brain cancer patient, who was diagnosed on 17 September 2017. She has completed her 6 weeks of radio/chemotherapy and her 1st 5/23 cycle of temozolomide. I'm looking for immunotherapy(dendritic cell therapy), and where to get it done from is something that I'm terribly confused about. I shortlisted the following:
1. IOZK(They say they will do hyperthermia) while my mom is on chemo, and will do the DC after my mom is done with the Chemo. They say they won't be able to use the tumor block because it is stored in paraffin. They tell me they have their own set of GBM antigens that they shall use.
2. Dr Nesselhut: They say they will give 4-6 vaccines of dendritic cells and can be given while on chemotherapy(1 week before or after). But they say that they can use the tumor block for making the antigens, despite the fact that the block is in paraffin. They say they can 'de-parafinise' it. I'm not sure if they really are true with their claims, but they were the only place that said they can use the block to make the antigens
3. Verita Life, Bangkok: They say that they can give the dendritic cell therapy while on chemotherapy with their own set of antigens, but can't use the tumor block. They shall couple the treatment with a lot of herbal IVs like quercetin, curcumin, resveratrol, Vitamin C etc.
4. Dr Robert Godner: They've asked me to wait for another MRI since the recent one came out clean, but with choline elevation(which is either a sign of radiation injury or residual tumor/recurrence).
I wish to know what shall be the best place to get the immunotherapy done from? Would love objective inputs from you guys. I would also want to know how many times you were made to travel to these places, if you've experienced the dendritic cell therapy from them.
PS: My personal preferential order is the order in which I've placed the above places, but IOZK and Dr Nesselhut, I foresee will easily call us to Germany about 8-10 times, which I'm not very sure my mom will be able to go. So, travel for a GBM patient a few months from now is a concern.
If I were deciding for myself, I'd go with IOZK. I think they have the most experienced team (Dr. Van Gool), actually published some results (for example Stephen posted 1 article few days ago about 15+ months PFS with immunotherapy at IOZK after complete resection of IDH1 wildtype GBM). First time I've heard of "de-parafinisig" a sample, a bit sceptical about that. Few members of this blog already visited IOZK and had positive things to say, maybe search the IOZK label. How long does a treatment last? Maybe staying in Germany during treatments would be an option? I also know someone from USA who went to dr. Nesselhut and arranged to get some vaccine shots mailed back to USA. But I don't think that's very good for vaccines - probably they have to be stored at lower temperatures and used as soon as possible
ReplyDeleteI would concur with IOZK being the first choice.
ReplyDeleteAccording to their website "In Europe our vaccine is the first autologous (patient-specific) tumour vaccine used in combination with an oncolytic virus, which has been awarded a manufacturing authorisation according the Medicines Act for advanced therapy medicinal products."
Newcastle Disease Virus was formerly also used at the Nesselhut clinic but apparently the German authorities shut down that part of their operation. I haven't found any news stories on this, this is just the "word on the street".
Did IOZK mention anything about obtaining tumor antigens ("serum-derived NDV/mEHT-induced antigenic microparticles") from a blood sample? It was my understanding this was done when there is no available fresh/frozen tumor sample.
I'm not sure you'd have to go as many as 8 times.
More detailed info on the IOZK protocol here:
http://www.iozk.de/aktuelles/iozk_austin_oncology_case_reports_2017.pdf
This paper doesn't include info on the method for obtaining antigenic microparticles from the blood however.
Prof. Van Gool (of IOZK) has a long (>20 years) publication history to his credit:
https://www.ncbi.nlm.nih.gov/pubmed/?term=Van+Gool+SW%5BAuthor%5D
Hi Sahil,
ReplyDeleteI'm almost at the same point in the therapy cycle / timeline as your mother, as I was diagnosed on 20th September and completed my 6 weeks of chemo-radiation in early December. I ultimately decided to go straight for an immunotherapy rather than push on with Stupp protocoll chemotherapy cycles first, mainly because my tumor is MGMT unmethylated.
I decided to do my treatment at IOZK for a variety of reasons, and I recently completed my first treatment cycle (out of a likely 2 initial cycles). Like your mother, I did not have any frozen tumor material, and therefore had the vaccine made via liquid biopsy (blood sample, as mentioned by Stephen above). I've been extremely happy so far with the IOZK clinic - not only in terms of the treatments themselves but also in terms of the overall friendly atmosphere there. After a lot of in and out of various 'normal' hospitals and oncologists, it's quite refreshing to be treated not just as another cancer patient but as a human and equal... It's obviously too early for me to talk about whether the treatment will be a success, but then, this would really be the same also for a chemotherapy after just a few weeks. For now, I've been left with a very positive and professional impression.
Regarding logistics, and assuming your mother would be doing the same treatment as I am, then I believe she's have to most likely be in Germany at least twice initially for the vaccination cycles (each time, the cycle takes around a week, roughly an hour or so per day spent at the clinic). I believe the usual process after two such cycles is to do a final check two weeks later to see that an immune 'memory' has been achieved. Upon successful treatment, I believe it's up to the patient how frequently he/she'd want to go back for booster treatments, but I heard it could be every ~3 months or so for many of them. IOZK has clients from all over the world traveling in for treatments - in fact, I rarely met any Germans there.
I hope this helps, and wish you and your mother all the best in choosing the best treatment option - and most importantly in treatment success.
Best,
John
I forgot to add that another modality at IOZK is to already combine some elements of the treatment approach concurrently with chemotherapy cycles. In this case, each 5-day TMZ cycle is followed by 3 days treatment at IOZK. So if your mother wanted to complete the entire 6 months of Stupp 5/23 with this approach PLUS the vaccination afterwards as described above, then it's true that more visits to Germany would be required. Obviously, another option would be to wait until AFTER the 6 months chemotherapy to add a immunotherapy at the end only.
DeleteBest,
John
Thank you so much John, Stephen, Matjaz for your inputs here! They were really insightful. I've read and heard some really positive things about IOZK not just from you, but folks elsewhere too. Not so much about the other places in fact, not even Dr Nesselhut who is associated with Dr Raymond Cheng.
ReplyDeleteStephen, no they didn't mentioned about a blood biopsy. But I guessing, hearing from you and John about it, I think this is possible by Dr Van Gool.
I calculated that I'll have to go there a total of 6 times - 2 times for the DC vaccine and 4 times after the remaining 4 temozolomide cycles.
Would love to know from you guys if you have an idea on feedback of Verita Life, Bangkok? I'll only have to go there once and they say that they can ship the DC vaccine back in India, where I live. Which means that my mom will have to only travel once.
From the Verita Life website:
Delete"Dendritic Cell Therapy boosts the numbers by taking some immature Dendritic Cells from the patient’s own blood and cultivating, processing and activating them in the laboratory."
I didn't see anything about priming the dendritic cells with tumor lysate or other forms of tumor antigen, so this doesn't really compare with what's being done at IOZK, or clinical trials such as DCVax.
But the doctor who I spoke to said that they have their own antigen bank for glioblastoma, against which they shall train the dendritic cells. Not sure if the website is correct or the doctor who I spoke to there.
DeleteThe treatment is a black box beyond a point :(
Hi Sahil did you pursue this treatment? We are exploring this option for my husband. Can we get in touch?
DeleteDid you ask IOZK if they could also ship the vaccines to you/your doctor? I'm not really familiar with the subject, but as I said, I think you should also consider DC viability.
ReplyDeleteFast search on dendritic cells:
https://www.ncbi.nlm.nih.gov/pubmed/25081090
"When mouse dendritic cells (DCs) are isolated from tissues, purified and placed in a nutritive culture they die more rapidly than would be expected from their normal turnover in vivo. "
It probabčy takes some time for the vaccine to arrive and there can also be problems on customs control, which further prolongs shipping time.
I'd contact dr. Van Gool, he will give you the most educated guess on this one.
Thank you for this perspective Matjaz. I've mailed Dr Van Gool asking for an option of shipping the DC vaccines here in India, so that things get more convenient for me any my mom. Hoping for a positive response :)
ReplyDeleteI know that when DCVax was shipped overseas from a lab in the US, it had to stay frozen until used and was shipped in a liquid nitrogen freezer. This added $1500- $1800 USD onto the cost (2015 prices).
DeleteFolks at both IOZK and Dr Nesselhut refused shipping the dendritic cells anywhere outside Germany. They said that the German law doesn't permit them to do so, have asked us to come to Germany every time my mom has to get the vaccine. :/
DeleteHi Sahil. I just cam across this bolg. Kuala Lumpur may be another option for you if you are still looking for DC. My son had GBM resected 18 months back and we found Dr. Fred at CellPlus http://cellplus.com.my/
ReplyDeleteDr. Fred has his own protocol and DC lab. I do not believe that he will ship to India. We had a total of 6 DC treatments (draw blood and DC infusion session = 1 treatment) 3 months gap in between treatments. We had no chemo/radio done prior to this. Good luck with mom and all the best.
... we've also been doing MRIs every 3 months and so far all good news. Will
ReplyDeleteHi sahil. My mum has recently diagnosed with stage 4 lung cancer. May I know what treatment did your mum went to and so far how was the result?
ReplyDelete