Hi all,
thanks for your responses to my previous post.
In germany methadone is a huge topic which is often discussed in media.
Dr. Claudia Friesen, who works in a university hospital was the first who
randomly discovered the effects on brain tumors.
On April 21 2018 there was a big convention in Würzburg, called the brain
information day she talked about her experiences. She told the audience that
she knows 79 persons using methadone between 2013 and 2018. 13 of them died,
the others survived till this day:
35 of them more than 2 years
25 of them more than 3 years
4 of them more than 4 years
2 of them more than 5 years
Unfortunately there is no clinical study to back her
results. Dr. Friesen is fighting to get methadone tested in a real study but
there is no big support in the established brain tumor research.
Lots of german researchers doubt her results and even refuted them in a little
study. Dr. Friesen argued that their study was done wrong. For example they
used another formula of the methadone. Dr. Friesen used D,L-methadone in
combination with Temodal.
The idea of methadone is to increase the effect of Temodal.
I hope she gets her study, till then you can trust her
or not.
If you want to take methadone, you should start with 3
drops in the morning and evening and increase to 20 - 35 drops two times a day.
For example you can take 2 x 3 drops on day one, 2 x 4 on day two and so on and stop when you can
not tolerate more. You should then stay on that level. If you want to stop
methadone, you have to reduce the dose slowly.
Side effects are mainly constipation but there are
lots more possible, especially if you increase or reduce your dose to fast. You
can find them in Wikipedia for example. In my experience you need 1 month to
get used to it, so be careful and patient.
"She told the audience that she knows 79 persons using methadone between 2013 and 2018"
ReplyDeleteThis is interesting, but I wonder what were the diagnoses of these 79 persons? All brain tumors (what grade)? Multiple types of cancers?
I'd certainly be interested to see any abstract/slides/poster from this presentation if any exist online.
Thanks!
Hi Stephen,
DeleteI was also at that conference and I took some pictures of her slides. I'll send them to you later.
She documented 79 cases of patients diagnosed with glioblastoma. She gets her data from patients like my Dad because we sent her the MRI-pictures and reports. Those people (13) who died either quit, died due to other causes (pneumonia) or where in their last days when they started.
Luckily, Dr Friesen was able to find around 150 doctors throughout Germany who are willing to help her. She thinks she'll be able to analyse 1000 patients. Obviously she wants to wait for a larger amount of cases before publishing her results.
We're extremely grateful for her research and dedication! My Dad's still with us, 2.5 years later (inoperable glioblastoma)!
I found her email at https://www.uniklinik-ulm.de/rechtsmedizin/forschung-studien/arbeitsgruppe-frau-dr-friesen.html
Deletecf-methadon-krebs@uni-ulm.de
I can message her to ask for whole presnetation and if I can post it here. Or are you Steffi already in contact maybe?
And thanks for sharing!
You might have to wait a long time for a response if you email her. I mailed her back in October and got a response more than 2 months later. As of December '17, according to her she's had 20.000+ cancer patients contact her, and she is replying in sequence...
DeleteMaybe it's possible to get the slide materials from the conference organizers?
Hi Steffi,
Deletei was not on the meeting myself. Did Dr. Friesen give an explanation for her statistic? I think most of the patients who contacted her did that in the last year after the reports all over media. So in my understanding there should be lots of patients who were diagnosed in the last months. So there should be lots of patients in the statistic who survived less than two years, just because their diagnose ist newer.
Did she explain that?
Methadone is not just a big media topic in Germany, but my understanding is that it's also become an almost mainstream adjuvant treatment for a lot of GBM patients if my Neuo-oncologist (also in Germany) is to be believed. He told me he estimates that probably a quarter or more of his patients use it. The problem is that there is a lot of hype & expectation around it supported by very promising case studies, yet doctors' actual experience with their patients seems to vary. Some do indeed see it as a no-brainer as it's possibly effective (even if unproven, statistically) and can greatly help some people in terms of quality of life. Some (including my neuro-oncologist) claim they don't see the results with their patients and, quite in the contrary, see cases where it's detrimental in terms of side effects (e.g. bloodwork / liver etc.). So my NO still accepts patients' wish to try it, but he's become more negative on it over time based on his own experience with patients.
ReplyDeleteI think a big problem is that it really hasn't been studied in detail yet in terms of dosing etc, so maybe it's only effective when used in the right way. I also got hold of some, but I havn't used it yet as I havn't done any chemotherapy cycles yet post-RT.I'd definitely consider it though if I do end up doing any TMZ cycles.
Is it compatible with cannabis oil?
ReplyDeleteI didn`t find an argument against that combination. My brother is using both. I think Stephen explained that in a previous post.
DeleteCould you write please, if your brother uses it in parallel with the "official" treatment, or as standalone? If cannabis oil, then CBD or in combination with THC? Please excuse me if the question are too personal, I am seeking alternatives for the standard treatment.
DeleteThe patient takes TMZ+CCNU, which is considered anyway a new path (as I understand), so mixing this extremely toxic combo with other drugs worries me. But I am afraid what happens with the TMZ+CCNU, since the blood platelets take long time to recover.
Hi Stefan,
Deletehe uses Sativex Spray which contains THC an CBD.
Methadone and Sativex is used in combination with Temodal (23/5).
I think expecially methadone should be combined with Temodal and not as a standalone. Don`t be too afraid of the chemo.