Friday, 28 April 2017

Kelly Hauf, Cannabis Oil, low grade glioma

Hi again,

I'm wondering if anyone has looked into the Kelly Hauf story? She put a Oligo recurrence into remission with an intense cannabis oil protocol over a period of 8 months. I've been talking with her via Facebook and her story really seems legit. Her surgeon was Mitchel Berger and she also worked with Dr. Butowski who advises Cheryl Boyle on cannabis use too.

I don't have a specific question really. Just wondering about your thoughts on her story.

14 comments:

  1. It would be helpful to see MRI images from before (Nov 2013) and after (August 2014) her 8 month cannabis oil protocol.

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  2. Yes, that's true. I can ask her if she has ever shared them. I was a little stalker-ish and combed through her Facebook page. It all adds up time wise and she'd have to have a lot of family and friends in on the lie if it were fake...but, of course, I'm sure people have gone to greater extents for whatever reasons. I'll ask about the MRI's.

    Still, given the "research" I've done on cannabinoids it seems possible. It seems as though they target multiple tumor growth pathways. She also used a number of supplements which may have helped and ate a low glucose diet (I've read that hyperglycemia is an independent factor in PFS, OS and progression to malignancy).

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  3. I'm going to hijack this thread and ask a second question. On AO you say this - The Kaplan-Meier graph shown in Figure 2 reveals that for IDH-mutant tumours with total resection of enhancing and nonenhancing tumour (residual volume less than 5 cubic cm), there was roughly 80% surviving at 200 months (16.7 years). According to the graph this 80% survival line was crossed at just over 50 months in the subgroup with over 5 cubic cm of residual total tumour.

    Am I understanding right that 80% of this group of AA3 and secondary glioblastoma patients lived for 200 months, with total resection and less than 5cm of residual tumor remaining? This included glioblastoma patients?

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    1. You can see from the step sizes of that graph that there are only 8 patients in that subgroup. So its a pretty small data set and is enough to make the authors point that being extra aggressive in surgery with IDH1 astro patients is worth the extra risk.

      But looking at the graphs it is also a little unclear how the applied the rules for sensoring patients lost to follow up. They don't have marks on their graphs showing sensored patients, so its a little unclear if they really do have data out that far. So its a pretty big stretch to say 80% of grade 3 astro gets cured if full resection is done.

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    2. Excellent observations Brian. To my eyes it looks like there were 10 patients in the total resection (enhancing + non-enhancing) IDH1mut subgroup to begin with. After the first "event" the surviving fraction went down to 90%, and after the second, the surviving fraction went down to 79%. This alone tells us that one patient was censored before that second stairstep. The math is as follows: 9/10 = 0.9. 0.9 x 7/8 = 0.787.

      As you quite rightly identified, there are no marks on this Kaplan Meier curve showing where patients were lost to follow up. All we know is that at least one patient survived out to 200 months. The rest of the surviving 8 patients may have not been followed up nearly so long. The meaningfulness of this graph certainly suffers for not showing where patients were censored due to limited follow-up time.

      I do suspect that with long enough follow up, the graph would look rather different than the one that got published.

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    3. For those scratching your heads, we're talking about Figure 2 here:

      https://academic.oup.com/neuro-oncology/article/16/1/81/1338591/IDH1-mutant-malignant-astrocytomas-are-more#21090566

      And my comments on the same study here:

      http://astrocytomaoptions.com/idh1-mutation/

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  4. Maria, It would be helpful to know how much cannabis oil Kelly used. I'm trying to figure out what "intense" means in terms of dosage. Also method Kelly used to take the CO, caps, spray, etc...

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  5. Hi AGM,

    She explains it here: http://www.kellyshealingpath.com/?page_id=61

    She also tells the complete story on the site. I think it's hard for her to explain in some ways cause she was just winging it. She had some advising from this doctor: https://www.drjeffhergenrather.com

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  6. An interesting study recently published:
    "Does early resection of presumed low-grade glioma improve survival? A clinical perspective."
    https://www.ncbi.nlm.nih.gov/pubmed/28401374

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    1. Important findings:
      1.No difference was observed in overall survival for early resection compared to wait-and-scan.
      2.Biopsy was associated with shorter overall survival.

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    2. Retrospective studies have to be taken with a grain of salt. Correlation does not imply causation. E.g. there could have been a good reason why doctors chose wait and watch vs biopsy vs surgery in those particular cases (size, symptoms, etc.)

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    3. Exactly. Selection bias is a major pitfall in retrospective studies. I'd imagine the patients in this study that underwent biopsy only may have had tumors that were more often in more difficult locations where full resection might have been too risky.

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    4. I have seen both of those physicians at UCSF. One is a neuro surgeon (very well known) the other, a Neuro Oncologist. I have never had those conversations with them, and have tried. I would like to read more about this person also!

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    5. Kelly hasn't responded to my MRI question. :/

      Maybe someone on here can talk to them? I sent an email but received no response. I'm sure it's a hard question to answer.

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