Hello all,
I'm wondering if anyone has tried the Care
Oncology Clinic protocol? They are now in the U.S. and I'm considering
it as an additional therapy for my husband. I'm interested in hearing
about potential side effects of the drugs, what neuro-oncologists had to
say about it, etc. Also, he's currently on a hydroxicytrate/ALA combo
and I'm wondering which metabolic treatment would be best/has better
data. He's also doing a combination of TMZ/CCNU.
Another
question-- his most recent MRI shows radiation necrosis. Is there data
that shows any natural treatments that could help?
Thank you all!
For radiation necrosis, you could look at hyperbaric oxygen treatment.
ReplyDeletehttp://n.neurology.org/content/84/14_Supplement/P4.218
This is interesting, thanks for sharing. I asked his radiation oncologist if hyperbaric oxygen would help but he said data shows it doesn't... I'll have to look into it some more.
DeleteAs for Care Oncology, I've heard they've had good results in GBM, but I haven't seen that the data has been published yet.
ReplyDeleteI presume you have already seen the below Care Oncology paper, which was also posted here on the blog back in March:
ReplyDeletehttps://presentations.yesware.com/f282692987bb2ea12dedb230dde95f633168f5ce/4c153fd23d93adfa8ccad258cbe53b1a/e5c138ccb8ec563ba4f54a01c3a774a8
As for the four medications (Metformin, Atorvastatin, Doxycycline and Mebendazole), I've been taking these for the past three months (in addition to Celebrex) without any problems or side effects.I did have some minor gastric issues / bloating / very slight nausea etc. over the first few weeks or so, probably due to scaling up Metformin (which is notorious for these side effects) to the 1000mg bid level. However, my experience has been that the side effects completely subside after some time, and I have literally zero now.
I should note I'm not taking the full dosage of Atorvastatin, though (just 20mg daily), as I was a bit concerned about in-vitro studies showing it might potentially have a negative reaction with IDH1 mutantion, which I have.
I'm also thinking about adding the Hydroxicytrate/ALA combo, so would also be interested if this can be combined effectively.
Thanks John. I have seen their white paper. It does look promising and is definitely something I'm considering, I was just hoping to see more data from the actual trial. Nice to know that you don't have side effects. Did you go through the Care Oncology Clinic or did you source the prescriptions for these medications through your own doctor? Do you mind sharing the studies about the potential reaction of Atorvastatin with IDH1-mutant tumors? My husband's tumor is also IDH1-mutant. I'm also concerned if this treatment protocol would prohibit him from participating in clinical trials in the future... I guess it depends on the trial.
DeleteThe atorvastatin, IDH1 study was discussed briefly in the comments here:
Deletehttp://btcocktails.blogspot.com/2018/02/idh1-r132h-mutation-enhances-cell.html#comment-form
In the study, high concentrations of atorvastatin caused a compensatory increase in SREBP2 expression. SREBP2 is a transcription factor that helps activate cholesterol synthesis. This led to increased IDH1 expression and production of 2-hydroxyglutarate in a cell line with mutant IDH1.
As I mentioned in the comment on the other post, the atorvastatin concentrations used in that study are far higher than ones you would get in the real world with normal dosing, so I'm not sure that is even a concern in reality.
My husband is on the Care Oncology Care protocol. He staryes two weeks before he started treatment this week. I asked a ND about Hxdroxychloroquine and she was opposed to it. Did any of you also added supplents with your cocktail. I read about HBOT too. Going to set it up for my husband.
ReplyDeleteConsidering CareOncology. Has anyone on here used Care Oncology in U.S.? How have the consults worked for you? Have you used additional meds/supplements beyond their standard four? Any particular doctors at COC you recommend? Any other groups/doctors (outside COC) you would recommend for overseeing the cocktail approach? Have not had a great deal of luck with local docs thus far regarding cocktail approach. Thank you!
ReplyDeleteMy husband is using COC. Doctor answered lots of questions and yes we are doing supplements and meds outside the standard four. He had to reduce the statin down to 20 mg due to liver enzymes spiking. The neuro onc we consulted thought their approach was "reasonable" given their initial data. We also consulted with a nutritional consultant who is knowledgeable about GBM. She assisted us with keto details and supplement doses. Best to you. This web site has been extremely helpful.
DeleteI'm curious if anyone knows if Radiation Necrosis stays contained in the radiation treatment field? Or does it move outside of that and continue damaging the healthy tissue untouched by radiation? My husband had Proton Beam Radiation for an IDH1 mutant AA3 two years ago and is now presenting with either radiation necrosis or tumor progression.
ReplyDeleteMy mom, 8 months after radiation therapy, also has radiation necrosis. At the moment I'm looking for what to do. Stephen graciously posted a link to hyperbaric oxygen. However, it is unclear what the risk of hyperbaric oxygen, if there are still residues of the tumor (glioblastoma).
DeleteTogether with the appearance of radiation necrosis, mother developed a weakness, an unstable gait. A contrast enhancement on MRI also appeared. We did PET with methionine to distinguish progression from necrosis.
I recently came across this interesting mouse study, suggesting a strong synergy between high-dose Metformin and the Metabloc (Hydroxycitrate + alpha lipoic acid) treatment:
ReplyDeletehttps://www.nature.com/articles/s41598-019-39109-1
What I am struggling a bit with is the dosis. The high dose metformin group is given as ca. 25mg / kg, which I understand would convert to only roughly 2mg / kg in humans. However, I am currently taking almost 10x this amount of Metformin (1500mg per day). Is there something I am missing / misunderstanding?
Anyone?
This is indeed a very small metformin dose for mice. Other studies I've seen used 10 times that much or more, 250-500 mg/kg, which converts to normal metformin doses in humans ~ 1500 - 2000 mg.
DeleteSo the "high dose" in this study is by no means high dose, (actually it is quite a low dose), it's just the highest dose they tested.