Diflunisal worked very well for my brother. He was fed via feeding tube 3 months ago then he improved very much on it but now today he is on the feeding tube again. We run out of Diflunisal bags few weeks ago. Tumor is small but edema is a problem. I don't want to buy the whole Diflunisal therapy at unifontis. Anybody knows where can I buy just the Diflunisal bags? Which pharmacy in Europe would sell it on doctors prescription? I was able to get intravenous aspirin but how to get the intravenous Diflunisal bags?
So we still had 3 bags of diflunisal left over. Few days ago my brother was not talking at all not making any contact . His body was swelling too and heart rate was unstable. After restarting the diflunisal and aspirin again we have immediate improvement. His vitals are stable. He said few words today and edema on the wrists is gone.
ReplyDeleteAfter searching in a few countries we did not find any Diflunisal anywhere. So it seams Prof. Drevs has a patent for it and it is available only in his clinic. There are oral Diflunisal tablets however and those are available by prescription in US and Turkey. So for anybody who can not afford intravenous therapy it might be an option. On the facebook unifontis page there is also some information stating that they have a blood test at the clinic which can predict if the Diflunisal therapy will work for particular patient or not. So far this therapy has been keeping my brother alive for the last 4 months. 4 months ago he was unconscious already with unstable vital signs and as of today he is paralyzed but fully alert and can say a few words.
ReplyDeleteDear Lucy
ReplyDeleteThanks for sharing this information. I am really sorry about your brother.
I have a very dear friend too who has been struggling with a grade 3Astrocytoma for seven years He recently became bedridden, lost speech and has difficulty swallowing.
We contacted Unifontis, and had a Skype chat they were very nice but the pricing for Diflunisal treatment is way over our possible budget.
Stephen Western kindly sent me this link. Do you know the dosage of Aspirin and Diflunisal that Unifontis uses?
Dear Talebi,
DeleteWhat is the link sent by Staphen Western..?I couldnt find it....Thanks..
I believe she simply meant the link to this post/thread.
DeleteDear Stephen,Where do we get Perillyl Alcohol for nasal administration..I have a left sided deep thalamic low grade gioma..25 yrs,female inoperable and the patient refused radiation and chemotherapy,but the tumour is stable last one year..
ReplyDeleteJai,
DeletePlease see the recent comments made on this old post:
http://btcocktails.blogspot.ca/2015/11/perillyl-alcohol.html
I'm not sure what country you're in, but if you happen to be in the US, perhaps you could arrange to meet with Dr. Clovis da Fonseca (who has done the most work with perillyl alcohol for glioma) on his upcoming visit. He is required to see the patient in person before he can supply the perillyl alcohol. See also other posts from this blog on the same topic.
http://btcocktails.blogspot.ca/search/label/perillyl_alcohol
Dear Stephen,
DeleteI am in Bangalore,India.I am trying to obtain Perillyl Alcohol but no success so far.
Dear Jai, Stephen is right. I meant the link to this post.
ReplyDeleteI will be so thankful to receive the dosage. There are some suggestions on the net, but I am not sure if they are made by people who actually administered the medication.
Moreover, there are methods to make iv Diflunisal from powder. A pharmacist might hrlp us, but if someone already has the experience I will be thankful to know their experience.
Dear Talebi,
ReplyDeleteSo i.v Diflunisal has to be custom made.It is not available commercially I feel.Also liquid aspirin.The trick is get cross BBB to the targetted brain area.
I'm pretty sure there is no commercial IV diflunisal preparation. I believe it gets prepared by specialty pharmacies.
ReplyDeleteHowever, IV aspirin is used in Germany (and some other countries). It's made by Bayer. The trade name is Äspirina I.V." Generically, it's called "dl-lysine-glycine acetylsalicylate." See:
https://www.google.com/search?q="Aspirina I.V."
Salicylates do cross the blood-brain barrier. Overdose can even cause cerebral edema. They have to be able to do so to be able to reduce fever.
@S Talebi and all,
ReplyDeleteDoes anyone know what´s the price for this treatment at the Clinic?
Thank you!
There is a complete price breakdown in the Brain Tumor Library -> 0. Important Reference Documents -> German Immunotherapy Clinics -> Unifontis
DeleteHello Matias,
Deletelong time no see! How are you?
Greetings,
Matjaz (probably slovenian translation of Matias :P)
https://www.cancertreatmentsresearch.com/diflunisal-2/
ReplyDeleteIt's available in IV form at a German compounding pharmacy. Usually combined with aspirin IV available at all German pharmacies. PPIs IV are also added prior to Diflu and ASA.