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.
It would be helpful to see MRI images from before (Nov 2013) and after (August 2014) her 8 month cannabis oil protocol.
ReplyDeleteYes, 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.
ReplyDeleteStill, 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).
However I still can not seem to find the dosages she used any help?
Deletehttp://www.kellyshealingpath.com/
Delete"The plan was to do the Rick Simpson cancer treatment protocol of 60 grams of highly concentrated cannabis oil over a 90 day period"
"I had not reached a gram a day by that time and was concerned that the MRI results wouldn’t be what we were hoping for. Indeed the report showed no change in the main tumor’s regrowth; however, there was a smaller inoperable tumor, in the cingular gyrus that we had been monitoring since my first tumor surgery ten years prior that was completely gone"
"To get to the amount of a gram of oil a day took months of building up my tolerance."
"I finally reached a gram a day and eventually up to two grams a day on the final two weeks before my second MRI at the end of August."
"In August, eight months after beginning the cannabis treatment, my MRI was reviewed by a leading Radiologist, my Neuro Oncologist, and my world renowned Brain Surgeon, and it was concluded that all that was remaining of the tumor regrowth was scar tissue."
Maintenance:
"I still had the headaches so I recently resumed my dose of .10 gm at night before bed. Since I am taking a 1:1 (CBD:THC) now as a maintenance, I do not have any side effects at all."
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.
ReplyDeleteAm 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?
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.
DeleteBut 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.
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.
DeleteAs 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.
For those scratching your heads, we're talking about Figure 2 here:
Deletehttps://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/
Hello, I just found this thread trying to get information for myself. I am in a similar situation as Kelly and hoping to avoid surgery or radiation. I hope that Kelly's story is real because it gives me some hope.
DeleteHave you reached out to Kelly directly? She responds via Facebook. I think her story is true. She recommends making your own oil from home grown, organic plants. I have typed up a response to BS1966 regarding my experiences talking to Kelly twice and it didn't go through either time. I'll try to retype later on. Her NO is Dr. Butowski from UCSF and her surgeon was Dr. Berger, also UCSF. She did consult with Jeffrey Hergrather (I'm not getting his last name right). She has never tried to sell me anything or direct me to specific businesses. I've also spoken with two other women who have no evidence of disease after using the oils. The dosage is high (2 grams daily) and it took a long time (8 months for Kelly, 2.5 years for one of the other women) and THC must be high. Sorry this is a quick response. As I said, I'll try to respond in better detail later.
DeleteMaria, 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...
ReplyDeleteHi AGM,
ReplyDeleteShe 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
An interesting study recently published:
ReplyDelete"Does early resection of presumed low-grade glioma improve survival? A clinical perspective."
https://www.ncbi.nlm.nih.gov/pubmed/28401374
Important findings:
Delete1.No difference was observed in overall survival for early resection compared to wait-and-scan.
2.Biopsy was associated with shorter overall survival.
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.)
DeleteExactly. 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.
DeleteI 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!
DeleteKelly hasn't responded to my MRI question. :/
DeleteMaybe 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.
I just discovered this thread by googling my mom (Kelly). Her story is real.
ReplyDeleteJust wanted to follow up with the OP and let you know that she's not really on board with sharing her medical documents on the internet. I hope you understand.
She receives a gazillion emails and can get a little overwhelmed...
Thank you for clarifying, Jillian.
DeleteJillian your Mom is AMAZING. Please thank her for sharing her story, it takes a lot of courage. She must also be so kind to even attempt to answer all of the inquiries. God Bless and may she continue to shine <3
DeleteUnless Kelly posts her complete cancer medical records from diagnosis to remission and complete follow records, her claim is bullshit.
ReplyDeleteShe also needs to sign a HIPAA release so that her oncologists can speak freely about her case.
You're certainly entitled to your opinion, but the confrontational tone of your comment is generally not a good way to get more information, if that's your goal.
DeleteThis comment has been removed by the author.
ReplyDeleteDuke you posted that a day before my mom’s birthday. You attempted to discredit a cancer survivors testimony the day before she celebrated another year of life. I encourage you to be more thoughtful and considerate before attacking what can be very personal, highly sensitive experiences of people you don’t know.
ReplyDelete- Jillian
(Funny, I forgot I had ever created this profile with the intention of writing posts to highlight the importance of positivity during challenging times...ha)
Thanks Jillian, I agree. I don't think this person has posted on this blog before or since that comment.
DeleteHello guys,
ReplyDeleteI stumbled upon another glioma (grade 3 astrocytoma) survivor, who seems was successful with CBD&THC treatment. Below are 2 youtube videos, where you can also see her MR scans and some older footage with her undergoing radiation and chemotherapy. That was in 2012 and I'm pretty sure she is still with us today, she also has website https://www.ameliapowershealing.com/
https://www.youtube.com/watch?v=jRYNBFFGTWc
https://www.youtube.com/watch?v=FghG2OLVBCo
Based on MR images in the video, she had she had a lot of tumor left after chemo and radiation. But she also shows MR images after her CBD&THC treatment, which seems are completely clean.
Hi , Anybody can help with update on Kellys situation today ? I can not find her on FB as well.
ReplyDelete