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Saturday, 24 February 2018

Perillyl alcohol. Full information about the treatment.

I've been in contact with dr. Clóvis Orlando, who is one of the main researchers in the treatment of perillic alcohol in Brazil. Email: clovis.orlando@uol.com.br
He was very kind, consulted us and wrote out a prescription for the purchase of  a finished solution in the Italian pharmacy in the city of Brescia. According to this recipe, I went to the pharmacy and bought a finished solution.
The finished solution is stored at a temperature of 2 to 8 degrees Celsius, in a yellow glass bottle.

The composition of 1 bottle:
Ethyl alcohol 96% - 45 g., Glycerin - 45 g., Perillic alcohol 96% - 10 g.
How to use:
Add to the inhaler 3 ml of mineral water PH>7. Then add 23 drops of the finished solution.
Inhaler (nebulizer) needs to be compressor. Not ultrasonic! Breathe through the nose. So repeat 4 times a day, every 6 hours.
You will need to choose a nebulizer with such performance that the procedure does not take more than 15 minutes. Now we already are experiencing the second nebulizer, so as the first worked too slowly and procedure borrowed 25 minutes.

Additionally:
1. We specifically bought an inhaler with a nozzle for the nose. I sent the video to the doctor and he said I could use this nozzle (see photo). So much more convenient! Unpleasant sensations - NO. The solution has a pleasant smell of lemon! We did not expect, but the procedure is quite pleasant. We've been doing this for a week.

2. The doctor recommended that we start a ketogenic diet! This is due to this research:
"Efficacy of a ketogenic diet with concomitant intranasal perillyl alcohol as a novel strategy for the therapy of recurrent glioblastoma."
2018 https://www.ncbi.nlm.nih.gov/pubmed/29391903

In Stephen's library you can find a lot of documents on perillol alcohol studies with glioblastoma.
In the photo, you can see the perillyl alcohol and the finished solution that I bought on the prescription by dr. Clóvis Orlando.




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37 comments:

  1. Semyon24 February 2018 at 22:21

    In open clinical trials, the following dose options are proposed:
    https://clinicaltrials.gov/ct2/show/NCT02704858?term=perillyl&rank=7

    "NEO100 is a highly purified (>99%) form of perillyl alcohol. Doses of 96 mg QID, 144mg QID, 192mg QID, and 288 mg QID administered intranasally to patients with recurrent GBM for up to 6 months."

    I can not understand, in this study, a dose of only peryllyl alcohol or a dose of the prepared solution is written.

    ReplyDelete
    Replies
    1. Stephen W24 February 2018 at 23:22

      According to the instructions here, it would be 288 mg of perillyl alcohol only. The prepared solution would be about 4 millilitres, which would be about 4000 mg total solution, assuming a density close to that of water.

      http://btcocktails.blogspot.com/2017/03/perillyl-alcohol-formulation.html

      Delete
    2. Stephen W24 February 2018 at 23:22

      Also, thanks for posting the information above!

      Delete
    3. Steffi3 March 2018 at 13:37

      Hi Stephen, do you know if it would be safe to take perillyl alcohol when taking methadone? It sounds really promising but I'm worried about possible drug interactions. Thank you!!

      Delete
  2. Matjaz26 February 2018 at 01:38

    Thank you very much for this information! If you don't mind me asking - did dr. Orlando agree to consultation via emails or did you have to meet him in person? Because I think that was the thing in the past - he agreed to consultations in person only, which was a problem for most, since expenses were high because of that.

    ReplyDelete
  3. Ildi28 February 2018 at 13:13

    Thank you Semyon for your constant contribution to his blog! I'm always amazed by the tenacity of your research.This information is very valuable, you made the process so much easier for us. I hope that all your efforts will be paid off and your mother will be one of the long-term survivors!

    - Can you tell me for how long that one bottle of POH solution suffices you? What we can expect cost-wise?
    - Also, if it's not a sensitive information can you share about the honorarium of dr. Clóvis that he asks for the prescription? Does he send the prescription online?
    - Is he allowed to send a prescription that covers several months at the same time, not only one month supply?
    - Is this the type of nebulizer that you're using? https://www.ebay.com/itm/Omron-MicroAir-NE-U22-Portable-Handheld-Travel-Pocket-Compressor-Nebulizer-Case-/172363592350

    My husband's tumors are constantly shrinking on TMZ and / or cocktail but I'd like to have all the information needed just in case. Thank you for taking the time!

    ReplyDelete
    Replies
    1. Semyon28 February 2018 at 22:46

      Hello, Ildi!

      One bottle of the prepared solution lasts 2.5-3 weeks. The doctor prescribed a prescription for 4 bottles. So, you will have 4 bottles for 10-12 weeks. During this time you can order yourself perillyl alcohol in Sigma Aldrich, following the link in the article.
      The price of each bottle is 50Euro.

      The doctor sent the prescription directly to the pharmacy and I just went there and took the mixture.

      The inhaler is probably the one that is needed.
      The main thing is that it should be compressor, not ultrasonic. But I do not see a nozzle for the nose. With it is much more convenient and the jet goes straight to the nose.

      Delete
    2. Semyon28 February 2018 at 22:53

      I would add that the procedure is not unpleasant, the finished solution has the smell and taste of lemon.

      Since the procedure does not affect either blood, liver, or stomach, I'm sure this is one of the reasons to add it!

      Delete
    3. Semyon28 February 2018 at 22:58

      dear, best wishes to your husband!
      Ask any questions!

      Delete
    4. The Explorer22 July 2018 at 14:12

      Hi Semyon

      I plan to consult with Dr Orlando so my father could add POH to his treatment for GBM.

      Could you kindly share your experience of the process of obtaining the POH? In particular:

      1) Was it an option for you to send the POH directly from the pharmacy in Brescia to you using a courier company?

      2) If not, was it an option to pick it up from a pharmacy in a different city in Italy?

      3) I gather you travelled all the way from Brescia back to Russia where you are based. Was it an issue for the POH to be in transit for so long (i.e. not kept in a fridge)?

      I look forward to hearing from you.

      Many thanks

      Elsa

      Delete
    5. Semyon23 July 2018 at 01:35

      1. The pharmacy in Brescia did not want to send POH by courier company.
      2. POH solution can be bought only in a pharmacy in Brescia. Dr. Clovis does not work with other pharmacies.
      3. I was carrying the POH solution in a temperature bag with a cold accumulator.

      I think you can not spend money on a consultation with Dr. Clovis. I've already spent them) Write me your email and I'll send you all the materials, write where to buy perillol alcohol and how to mix it. I now do not go to Brescia and we use higher doses than recommended by Dr. Clovis. Unfortunately, there is no special effect so far. The tumor does not increase or decrease. We have been taking POH for six months already.

      Delete
    6. The Explorer23 July 2018 at 13:11

      This comment has been removed by the author.

      Delete
    7. The Explorer23 July 2018 at 14:09

      Hi Semyon,

      just an idea responding to your comment that POH hasn't worked for you so far.

      Have you considered trying another nebulizer? For example, one with a better specification (e.g. with a smaller particle size), or a different type. Did you ask Dr Orlando why ultrasonic ones can't be used? I've been reading up a lot on it (as I am still deciding which one to get for my father), and I feel that this is also a very important factor.

      Check this out:

      https://www.future-science.com/doi/pdf/10.4155/tde-2017-0102

      In fact - I think you've already won half the battle by not letting the tumour increase!

      Delete
    8. netopolit18 March 2019 at 04:51

      Hi Semyon. May I please contact you privately about ordering process from Sigma Aldrich. I tried to order it from the distributor in my country but they require licensed institution to do so. My email is melange@me.com . Thank you

      Delete
    9. Semyon19 March 2019 at 00:29

      Hello! We bought perillyl alcohol through a licensed scientific organization. (That is, the buyer and payer was the organization!)

      Delete
    10. netopolit19 March 2019 at 07:03

      I tried that. I'm a biologist by vocation but working as a programmer for years now. I have some academic/research org contacts but it seems it's too complicated (at least here in Croatia) since they usually have to have a valid reason for the purchase and they are not registered for selling it so there is no (obvious) way for me to repay for the order. I'll try to find some other way. Thank you Semyon.

      Delete
    11. Unknown12 October 2019 at 22:44

      Did you get the POH? You can get it in Germany! Pozdrav

      Delete
    12. netopolit2 February 2020 at 02:30

      I did but I had to register my company for biotech research before ordering from Merck (Sigma-Aldrich).

      Delete
  4. Ildi1 March 2018 at 09:06

    Hello Semyon, thank you for the additional information. I've just read it so feel free to delete all the confidential information. I think I have no further questions for now but of course I'll be following your mother's journey here on the blog. All the best!

    ReplyDelete
  5. Steffi3 March 2018 at 13:44

    Hi Semyon, thanks for the great information! How strict are you about the 6 hours time slots? Do you get up in the middle of the night and then go back to sleep?
    Thank you and all the best!

    ReplyDelete
    Replies
    1. Semyon3 March 2018 at 13:48

      We can not take a break exactly 6 hours between inhalations. Breaks are from 5 to 8 hours. Total 4 inhalations per day.
      And we add a ready solution more than the norm: 30 drops instead of 23. Unpleasant sensations, even with such a dose, does not happen.

      Delete
    2. Steffi3 March 2018 at 13:57

      Thanks for your quick reply! Did your doctor order it from Sigma Aldrich or were you able to do so as a regular person?

      Delete
    3. Semyon3 March 2018 at 14:40

      This comment has been removed by the author.

      Delete
    4. Unknown30 April 2018 at 14:50

      Hello, Semyon! I am very interested in this therapy I would like to exchange opinions by mail with you if it is not a problem. This is my mail manuelmf80@gmail.com.
      regards

      Delete
  6. Unknown5 May 2018 at 05:14


    https://www.cancertreatmentsresearch.com/perillyl-alcohol-poh/

    The formulation of Dr. Clovis Fonseca is as follows:
    -A solution prepared with 10 grs. Perilic alcohol (sigma aldrich 96%)
    -45 grs. of glycerin
    -45grs of 96% ethyl alcohol
    Apply 23 drops of this formulation to 3ml of ph> 7 mineral water used in a nasal spray and apply 4 times a day.
    I understand that the Poh is not soluble in water so I do not understand why they have also used it in this way:
    - Using the pure poh 10/11 drops in water ph> 7 as explained by Daniel S. This seems to be used in the clinical trial .....
    I take for granted the discomfort and the irritation, I imagine also that by the action of the ethyl alcohol.
    I do not know which formulation is more optimal ... maybe including glycerin, but I would change the ratio to three 45ml alchol / 45glycerin / 10 poh ....... would I have to formulate at 50%?
    I do not understand why, if it is not soluble in water, it is used in clinical trials (which have already changed)
    https://www.researchgate.net/publication/281843168_Perillyl_Alcohol_A_Pharmacotherapeutic_Report_Molecular_Genetics_of_Malignant_Gliomas_Disclose_Targets_for_Perillyl_Alcohol

    Thanks all

    ReplyDelete
    Replies
    1. Semyon5 May 2018 at 11:39

      This comment has been removed by the author.

      Delete
  7. Stefan6 July 2018 at 06:30

    Semyon,

    could you please write, which concentration of the glycerin you use? I found only 85% gliceryn +15% water in local pharmacies, and they told me that no higher concentrations are available regarding the pharmaceutical grade. I have seen 99.5% sold in other places, but I am not sure if these products are trustworthy (no labels confirming the pharmaceutical grade).

    ReplyDelete
    Replies
    1. Semyon6 July 2018 at 21:17

      Hi, Stefan! I found food glycerin 99.7% for electronic cigarettes produced by Glakonchemie GmbH, Germany. Unfortunately, from the composition of the ready-made POH solution it is not clear which glycerin should be used.
      By the way, I now add 15 grams perillyl alcohol instead of 10 and 40 drops of the finished solution instead of 21. There was a burning sensation in the nose, but tolerable.

      Delete
    2. Unknown12 October 2019 at 22:59

      Hello, how to achieve 288mg/dose?
      What is the difference between you mixture and NEO100?

      https://cancerres.aacrjournals.org/content/79/13_Supplement/CT064

      Delete
  8. The Explorer20 August 2018 at 05:59

    Hi all,

    I have started giving my father perillyl alcohol for less than 2 weeks, and am already on our second nebulizer. Both nebulizer's plastic medication container cracked (more correctly - disintegrated) by itself. From observation, the plastic appears to have been corroded by the perillyl alcohol.

    Does anyone have similar experience? I have only mixed the poh, alcohol and water (and no glycerol).

    Thanks
    Elsa

    ReplyDelete
  9. netopolit16 April 2019 at 06:30

    Here's an update on getting all the ingredients you need to mix POH, especially for those residing in Europe.

    To get POH from Sigma Aldrich you have to have some kind of company/business because they don't sell to private individuals. I registered my existing company for bio-tech business but may not be a requirement, I don't think anyone checked what kind of business the company is registered for.

    Next, find a dealership for your country here https://www.sigmaaldrich.com/site-level/corporate/worldwide-offices.html .

    As mentioned above, this is the item you need to prepare the solution https://www.sigmaaldrich.com/catalog/product/aldrich/218391. You can order it from the dealership using CAS number listed on the page.

    You are going to need 96% ethanol that is suitable for use as an excipient. Don't use denatured (denat.) ethanol you can find in pharmacies because it's only for external use and contains additives (denaturants) some of which can be toxic. Here is a suitable ethanol from Sigma Aldrich https://www.sigmaaldrich.com/catalog/product/mm/100967 .

    You can get glycerine from a pharmacy.

    I found the inhaler from the original post above in a local pharmacy but it didn't include a nozzle for the nose. I ended up buying this model from the same manufacturer which does include the nozzle:
    https://www.omron-healthcare.com/en/compair-c28p . Only drawback is that this model is not mobile like one from the original post.

    ReplyDelete
    Replies
    1. Unknown12 October 2019 at 22:48

      Can I contact you on a private email?
      Pozdrav

      Delete
    2. netopolit2 February 2020 at 02:34

      Sure. My unofficial mail (not posting main one because of spam) is melange@me.com . Pozdrav :)

      Delete
  10. Unknown13 June 2019 at 13:16

    Does anyone know why it has to be a compressor style nebulizer and not an ultrasonic? Has anyone tried ultrasonic?

    ReplyDelete
  11. Unknown12 October 2019 at 23:04

    Hello, how to achieve 288mg/dose?
    What is the difference between you mixture and NEO100?

    Is there a consensus for the best nebuliser?

    https://cancerres.aacrjournals.org/content/79/13_Supplement/CT064

    ReplyDelete
  12. Unknown13 October 2019 at 00:09

    Can someone please explain why should we use compression nebulizers (and not ultrasound and/or mesh nebulizers).

    I see a lot of people use mesh nebulizers.
    Did you consider the difference in dosing?

    The differences are described here:

    https://scholarworks.gsu.edu/cgi/viewcontent.cgi?article=1001&context=rt_facpub

    ReplyDelete
  13. Valentin21 January 2020 at 13:25

    Hello everyone. Is anyone there who tried POH in pure concentration mixed just with 3 ml alcaline water. If anybody knows a protocol... I've tried inhaling 3 drops POH in 2 ml water and it wasn't unpleasant sensation... I'm not sure which is the role of ethilic alcohol which in my opinon is not so good for The brain... Thanks. Best Regards, Valentin.

    ReplyDelete