Monday, 15 February 2016

Treatment tip

Dear fellow brain tumor battlers!

I have got a treatment tip that I would like to share with you. It is perillyl alcohol via nasal inhalation. It has shown good results in phase 1 and 2 trials (198 patients), and it is exceptional in having practically no side effects; see http://www.ncbi.nlm.nih.gov/m/pubmed/26175929/?i=2&from=perillyl Note page 1585:
“All patients were only under palliative symptomatic treatment because they had failed current standard of care for malignant glioma recurrence. For therapy of these patients, POH [perillyl alcohol] was diluted in mineral water with pH above 7 (in an attempt to alkalinize the acidity of peritumoral edema) and was administered in a common nebulizer by intranasal inhalation four times a day. The initial individual doses were 67 mg qid (268 mg total per day), which were escalated up to 133 mg (533 mg total). t was noted that adhesion to the protocol was high (> 95%). At the highest dose, POH occasionally caused nose soreness and in rare instances nose bleed. After 4 years under continuous, exclusive POH treatment, 19% of patients still remain in clinical remission, while drug side effects were almost non-existent. It was concluded that long-term POH inhalation therapy is a safe and non-invasive strategy with efficacy against recurrent malignant glioma.”
See also https://www.mskcc.org/cancer-care/integrative-medicine/herbs/perillyl-alcoh ol

There is only one person entitled to offer the treatment: Dr. Clovis Olando. He is co-operating with oncologists who wish to offer the treatment to their patients. Unfortunately, my wife’s oncologist is overly conservative – as many oncologists are, I am afraid – so she did not want to co-operate. If this is also the case with your NO, you have two options: 
1: To consult Dr. Olando on a private basis. His email address is: clovis.orlando@uol.com.br He is willing to travel.
2: If you cannot afford that, it can easily be self-administrated. While it is not possible to buy POH in a nose spray / nebulizer – since it is not approved yet – it is possible to buy POH and fill it in a nebulizer. There are probably many suppliers. We bought ours from Sigma-Aldrich. They only sell to companies, however, so it required the kind assistance of our family doctor. It is probably possible to find suppliers that sell to private persons.

All the best,

Thomas

16 comments:

  1. Stephen, what are your thoughts on this?

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  2. Orlando da Fonseca is required to see the patient in person in order to be allowed to help the patient with perillyl alcohol treatment. This means either going to Brazil, or paying for him to come to your country.

    See the previous post on perillyl alcohol

    http://btcocktails.blogspot.ca/2015/11/perillyl-alcohol.html#comment-form

    I know some have experimented with do-it-yourself formulation of the perillyl alcohol for nasal inhalation, with limited success (due to harsh stinging in the nose).

    See this page for reference:

    http://www.cancertreatmentsresearch.com/?p=602

    I cannot vouch for the safety of doing this at home without professional guidance. I do believe that perillyl alcohol has potential in the treatment of glioma, as seen in the clinical trials carried out in Brazil.

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  3. Hi Thomas, did it work for you ? Where there any side effects ? Your name sounds a bit german :-). May i ask where you from ?
    All the best

    Christina

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    Replies
    1. Hi Christina,

      I’m from Denmark. Generally, my wife has only experienced minor side effects (a slight nose irritation). Yet, when her thrombocytes have been low because of the chemo, she has had nose bleeding, causing her to pause for a few days. There has been a slight tumor regression after she began taking it, but whether this is due to POH or the other treatments components is not to tell.
      Note that there is a greater chance for an effect of POH if the tumor is located in the midbrain area (cf. https://www.researchgate.net/publication/281843168_Perillyl_Alcohol_A_Pharmacotherapeutic_Report_Molecular_Genetics_of_Malignant_Gliomas_Disclose_Targets_for_Perillyl_Alcohol )

      Very best,
      Thomas

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    2. Thomas - may I ask how you purchased from Sigma? We asked our doctor if he was willing to do so and he was but when he went to their website, he couldn't fill out their application because there was no option for an individual doctor.

      You can write me back at logan607 at hotmail if you have a moment.

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  4. Hi Thomas,
    did you travel to Brazil to see Dr. da Fonseca?

    It would be nice if we would have a doctor in Europe that would offer this treatment and take care to prepare the drug. We are living in Austria, and it might not be that easy to travel to Brazil. On the other hand for a low grade brainstem glioma this looks like a good option.

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  5. No, that would not be possible / secure for my wife to travel that long. Dr. Clovis Olando kindly offered to travel, the cost being his airline tickets, hotel + 3.000 euros for honorarium. Unfortunately, we could not afford that.

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  6. Hello. I am curious as to the POH that any of you have acquired, which conformation was it? Was it the (S)-(-) 96% or the (R)-(+) 99% one? Also, where were you able to acquire it, and at what cost? Any information will be so helpful!

    Thank you!!!

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  7. Hello,
    is still possible to ask some questions about POH experience here?
    Thank you!

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    Replies
    1. Yes it's possible, what is your question?

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  8. Hi,
    We consider to start POH treatment for a woman in Moscow, Russia with (probably) recurrent glioblastoma. Is there any known better way to get POH in Moscow (or Europe) by a private person.
    Is it possible to prepare solution home (with a help of professional chemist)?
    What is an experience with Dr. de Fonseca? Is it still possible to invite him?
    Is it worth it?

    Thank you in advance.
    -Michael

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  9. I contacted dr Fonseca. He is kindly agreed to come to visit the patient and to explain ways to administer POH. Now we have to decide is it worth it or no.
    Can anyone share the experience? Is it worth it?
    There are couple of things that still need to be clarified.
    -Michael

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  10. It seems that nobody can comment on a personal experience with POH.
    -Michael

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    Replies
    1. I don't have any personal experience with Dr. Clovis da Fonseca, but if you somehow manage to get hold of clinical grade perillyl alcohol, I posted some instructions on formulating it for use with a nebulizer on a different post:
      http://btcocktails.blogspot.com/2017/03/perillyl-alcohol-formulation.html

      Also have no personal experience with formulating it this way, but the document on the above link was written by a pharmacology PhD.

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  11. Has anyone considered using this as a maintenance therapy to try to prevent recurrence of LGG? It sounds like it can be acquired in the US already and perhaps my NO would consider it?

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