We are getting ready for a visit to Husband's NO on Aug. 31st, gathering as much information as we can to take with us. If his scan shows any GBM growth, we are going to ask about adding a couple more "bombs" in his carpet-bombing arsenal. (The information we get here is so very, very valuable. Many thanks to Stephen for starting this blog. You are a missionary from God!)
My question concerns CO Consultants...can anyone recommend one that has helped them personally? I see Aunt Zelda's, Miriam's Hope, and Green Health Consultants and know there are others out there. Since Texas is a compassionate use state for epilepsy only, I guess we will have to fly to another state to get our card, but even then, I have no idea how we'll get the CO regularly. We need to talk to someone who knows about this better than we do. Help?
I highly recommend Dr. Allan Frankel, http://www.greenbridgemed.com/
ReplyDeleteHe was recommended to us by my husband's UCLA neuro-onc. He is located in Santa Monica, Calif. I know he also does skype/facetime calls too. Good luck!
Thank you so much! - Audrey
ReplyDeleteAudrey,
ReplyDeleteI got the free consult from Aunt Zelda's and found it very helpful in starting. I am taking CBD and THC oils but went with a different dosage and provider because of cost. from a local provide in San Diego, I have chosen to use Rick Simpson oils/method. FYI, I had to stop taking the THC oil in the morning because it was making me "high" at work. So now I just take it in the evening before bed.
Marc
Thanks for this. There was a less-than-stellar comment about Aunt Zelda's on a GBM Facebook page I read but I thought Mara Gordon seemed very knowledgeable in the video of a Q&A session she participated in.
DeleteSo if I understand you correctly, Aunt Zelda's suggested taking the two oils separately but you ended up getting the plants from a provider in San Diego and just making the RSO yourself, with THC oil at night?
Audrey,
DeleteAunt Zelda's recommended two cartridges, one CBD and one THC, of what I call paste. I chose to go with CBD and THC oils. I spray 5 - 7 pumps of each. CBD twice a day and THC once (evening).
Marc
Many thanks!
DeleteAGM
ReplyDeleteCan you tell us what recommendations were made for dosing - CBD/THC ratio, dose, frequency of use (BID, TID or?) and route (oral, sublingual, rectal)by Dr. Frankel?
We got two recommendations. The first was from Dr. Frankel. It almost didn't happen as his office staff never wrote down our Skype-appointment in the schedule (even though we paid ahead of time) nor did they pass him all of the medical files we had emailed for him to look at. But the visit did go well, once started. He was friendly and loved to talk about his work. He answered all of our questions and recommended 1:1 sublingual sprays, working up to 15 sprays/day that would deliver a total of 2.8mg of each compound per day.
ReplyDeleteThe second recommendation came from someone who must remain anonymous. He recommended working up to a daily dose of 300mg CBD, 60mg THCa, and 120mg THC, saying this was a very aggressive tumor and must be fought aggressively. I had sent him the same information that I had sent Dr. Frankel. I have to wonder if Dr. Frankel had had time to read through the medical history, he would have recommended a higher dose as well.
We ended up going with the second recommendation but are only up to a fraction of the daily totals because of the side effects: fuzziness and feeling hyper, not sleeping. I know people report sleeping more soundly on the oils, but this has not been my experience. Both THC oils soak into little cereal bits and are held under the tongue for five minutes, then the CBD oil is added to cereal bits and added. All three oils stay under the tongue for 20min then whatever cereal is left is chewed and swallowed.
Hope this helps.
I need to add in that the lighter dosing schedule that Dr. Frankel recommended was just for starters. It was his intent to raise the doses later on, after I got used to the 2.8mgs of each.
DeleteI am a bit confused. Most people (I believe away) are using a 1:1 ratio although some say higher THC for more aggressive tumors. But the recommended target dose is 1 g per day. In your post you said the recommendation is for far less than 1 g. In fact as low as 2.8 mg or CBD/THC each. Why the pronounced difference?
ReplyDeleteDoes the 1 gram dose refer to total weight of the cannabis oil? The actual THC+CBD content would be considerably less than that I would think, as the oil is not 100% cannabinoids.
DeleteI don't actually know because I am somewhat new to this as well and am just following what I'm advised to take. I understand how confusing this is. I am confused myself and must constantly go back to my notes to make sure I'm doing this correctly. I did make a mistake, actually, in that the saturation dose for CBD is 200mg, not 300mg, which makes a total of 380mg (for all three), even less than the 480mg I originally said.
DeleteBut to answer your question, Michael W, as best I can, I am not sure why my dose is lower than the 1g dose others have. In a way, I'm glad, since one of my new CO friends cautioned me to go very slowly at first. She did not - she took the full dose from Day 1, had a seizure, and ended up in the ER. I can only imagine how that conversation went, since we are in an illegal state!
Since the oil contains, as Stephen said, more than just that one component (either THC, THCa, or CBD), i.e. the terpenes, etc that are naturally occurring in the plant, I would not be surprised if the 1g includes X-amount of the target components PLUS their concomitant organic molecules.
So after this titrating-up phase is over, I will be taking 200mg CBD (at 100mg/ml, that is 2ml per day), 60mg THCa (at 20mg/ml, that is 3ml per day), and 100mg THC (at 100mg/ml, that is 1ml per day). Mixed into each milliliter is a full spectrum of the target compound + the concomitant terpenes, etc.
After I reach this amount and have another MRI, I'm guessing the dosing might change. Not sure.
Michael W., my dosing has changed. My new goals are: 470mg THC + 282mg THCa + 190mg CBD. Still not quite a total of 1 gram of CO but I'm told it goes by weight and other factors. To get accurate dosing and good answers to your questions, I suggest Green Health Consultants www.greenhealthconsultants.com.
DeleteDr. Frankel said he thought 1g/day was a bit high for a saturation dose but didn't say what my saturation dose would ultimately be. The 2.8mg of each component was my daily target dose to start out, in the "getting-used to it" phase.
ReplyDeleteThe saturation dose we are working up to is the one from the second expert: 300mg CBD, 60mg THCa, and 120mg THC, for a cumulative total of 480mg/day, still not the 1g/day others take, though the gentleman did say we'd reevaluate after I hit that full dose and got another MRI.
Ok, I got the MRI. The previous scan had shown my tumor to be ~60% stable, ~40% progressive. After that scan, we made some changes to my routine. I reduced the shark liver oil I was on from 1,500mg to 500mg. I added boswellia, boswellia AKBA, and coriolus versicolor. I tried to get used to CO as described above but had a really hard time and couldn't take it on a daily basis.
ReplyDeleteThis new scan showed my tumor about 50% larger, unfortunately reaching into my midline. There is also another tumor starting to grow a bit farther away. Neither is operable. I hit my head just before the scan, and this together with the tumor hitting the midline has caused a lot of edema. My NO wants me to stop all supplements and go on an Avastin + Carboplatin. I don't understand why such a hopeful scan last month turned into a dreadful scan this month. The only thing I know to do it to work harder at building up the CO tolerance. I feel very low.
Dear SJFirinne.
ReplyDeleteThis happened to my husband. Between July MRI and June MRI the cancer went to grow very wildly. He was diagnosed in Spetember last year. Has wild type glioblastoma and the tumor kept growing wildly since June.
However, we are not giving up and keep figthing.
All the best to you and a lot of strength.
Hana
Well, everyone on the Glioblastoma/CO Facebook blog seems to think that this experience is not unusual. Their GBMs took months to disappear, some of them, and they also had problems getting up to full CO dose. It took perserverance to develop a tolerance for the psychoactive side of CO. I now have a helmet I wear so I won't hit my head again and I'm starting over at a low dose. I won't take the Carboplatin but will take my first dose of Avastin tomorrow. Interestingly, when I feel my brain swell (yes, I can tell!), I take one drop of CBD oil under my tongue and the pressure goes away.
ReplyDeleteMay I ask if you're a candidate for Optune? That should be in your carpet bomb approach if available, IMHO.
DeleteI have a friend who is wearing the Optune beanie and swears by it. She has had at least two stable MRIs now. I called the doctor at the hospital nearby who is heading up this trial but have not heard back from his office.
DeleteI must say, after my first infusion of Avastin today, I felt clear-headed and my legs stopped feeling so wobbly. I'm taking it to reduce the swelling in my brain and it's working. Now, let's pray I don't get any of the side effects I read about!
We had shrinkage on our tumors after using it for several months; not sure if it's due to the Optune or our cocktail but I'm guessing it was a mix of the two. Just our opinion and personal opinion.
DeleteLogan, you are taking CO as well as using the Optune? That is what I'd be doing.
ReplyDeleteWe would like to and have an application for a CO card. We just need to get around to filling it out as she's been very tired and weak lately.
DeleteThis comment has been removed by the author.
ReplyDeleteA follow-up to this...
DeleteI also ended up calling Eloise Theisen at Green Health Consultants. She is easy going and very confident. Like Dr. Frankel, she answered all of our questions without any irritated pushback that we get from standard-of-care NOs and we ended up chatting about some common problems people have when trying to work up to a therapeutic dose of CO. It can be hard to do and she was understanding of that. She had looked over everything I sent before our Skype-visit and I found her suggestions on dosing amounts and timing to be in line with what sounded right. Her dose amounts were higher than Dr. Frankel's but about $200 less per month. I went with Eloise's recommendation.
The only thing I would add is that if I could get fresh CO leaves, I would add them to my smoothies as part of my CO routine. (https://youtu.be/qa0nLdVJiIg)