Hi all,
My Mum was sadly diagnosed with Glioblastoma in July. I have been meaning to post her cocktail here and get involved in this blog, so bare with me, I plan to write a full post this weekend. This blog has been so helpful and Stephens website too so I am keen to start contributing.
I have an update from the COC (Care Oncology Clinic) in London. I went to speak with them yesterday. My Mum is seeing them and they have prescribed the four drugs for her on top of the standard treatment which is great. As I live in San Francisco I was unable to go with my Mum for her first appointment, but as I am over here in the UK for a few weeks I booked an appointment to go and speak with the Doctor there and ask my long list of questions.
One thing that I really wanted to share was that apparently there is a new form of Ibuprofen that is going to become available in the next few months that does not cause stomach irritation. The Doctor said that the COC will be looking at adding this to their list of prescribed medications. They have held off recommending it at the moment as it can cause stomach problems so with this new version they are hoping it will be a great addition to people fighting GBM.
I will let you know if I hear more and if they prescribe it to my Mum in a few months time.
The drugs they prescribe for GBM are Atorvastatin, Metformin, Mebendazole and Doxycycline and they all sound really worthwhile taking. They have been chosen by the COC as they seem to have the least side effects of all the potential complimentary drugs. I really recommend seeing these guys if you are in the UK or contacting them wherever you are in the world.
I will post Mums cocktail soon. She is keen to keep it as streamlined as possible and that is what we are trying right now.
All the best to everyone.
Alison
Thanks for sharing Alison and welcome to the blog! That is interesting about the ibuprofen, I wonder how they've modified it.
ReplyDeleteOne thing to keep in mind about COC is that they seem to prescribe those same drugs to patients with all different types of cancer. Somebody I know with metastatic lung cancer was prescribed those same four drugs. Brain tumors have particular challenges, a major one being the blood-brain barrier.
So for example, as far as tetracycline antibiotics, most of the testing with GBM has been done with minocycline (not doxycycline), which probably has the best BBB penetration, being highly liphophilic. Of note, CUSP9v3 (a cocktail for recurrent GBM) has added minocycline to the mix.
I haven't seen any experimental evidence that atorvastatin can be effective in brain tumors, although this is in a phase 2 clinical trial, so we should have some data within the next year or two.
https://clinicaltrials.gov/ct2/show/NCT02029573
Please do post the rest of your mom's cocktail, and best wishes to you both.
Hi Stephen,
ReplyDeleteGood to know! I have also heard about Minocycline and will ask them why they choose Doxycycline over that. In fact, it was Liliana at the CPMC who mentioned Minocycline as something worth checking out.
The COC seemed confident that the drugs would be able to penetrate the blood brain barrier and that even though it is early days they were seeing some great results so far. But, I will be wary as like you say there is a lack of evidence in terms of trials and the BBB can throw a spanner in the works.
Will post Mums cocktail this weekend. It will be good to be able to contribute more to this fantastic resource you have going.
All the best,
Alison
Hi Alison
DeleteI am also new to the site. My husband was diagnosed with GBM in August. He is 45. As you know the NHS is fantastic in many ways but we have not found anyone so far who is willing to discuss anything beyond the standard treatment, so we have made an appointment with the COC. Your note is very helpful so thanks for posting. I hope we can keep each other updated. One question - is your mum under the care of a neuro oncologist? they seem to be very thin on the ground - there is an oncology team at our hospital but none of them is a neuro specialist.
Many thanks to Stephen for this amazing site - your guidance is invaluable
Hi there,
DeleteSorry to hear about your husband. I am glad you have found this site though and are looking at additional treatment options. The NHS is indeed great for the standard treatment, and within the NHS you can still find the best of the best in terms of UK surgeons and oncologists as they tend to work privately as well as at their local hospital.
Your husband was diagnosed at a similar time to my Mum, is he currently undergoing radiation and chemo?
My Mums oncologist specialises in Brain and Breast Cancer. She doesn't seem to have the title of 'neuro' oncologist but she has been fantastic so far. I am not sure Mum would get any different treatment under the NHS even with a neuro specialist but it is hard to know of course. The nice thing we have found with her is that even though she cannot recommend any additional treatment, she is absolutely open to my Mum pursuing complimentary medications and adding in supplements as long as can see no reason for them to do any harm to my Mum or have any negative effect on the chemo/radiation therapy. She has a lot of patients now that use the COC it seems and is wary of it but has said she would probably do the same and reach out to them. I like her openness to these things but understand how she is tied into the NHS protocol for treating brain tumors and cannot stray from that path.
Have you discussed the COC with your husbands oncologist? They may at least be open to it even if they cannot fully support it.
I would love to hear how your husband finds the COC and am very happy to share my Mums progression. Please let me know if you have any questions or if I can help at all.
Thanks!
ALison
Hi Alison, thank you so much for your note and apologies for the delay in replying. I would say our oncologist is understanding, rather than encouraging, of our efforts to find additional treatments. She is also wary of the COC, for similar reasons to Stephen and seems to have particular concerns about mebendazole. We are going to the clinic next week anyway as we have heard several positive reports. How is your mum doing on the cocktail?
DeleteHi Alison. I took my husband to the COC and our experience was also very positive. I don't have any additional information to add to your comprehensive notes regarding the meds. However it made such a difference to him to be listened to and to see options beyond TMZ. Hope your mum is doing well. And I managed to sign in properly this time so no longer anonymous!
DeleteHi, we live in Australia & my brother has a GBM. He is about to start the Care Oncology drugs. I was wondering why they prescribe Doxycycline & not Minocycline.
ReplyDeleteI'll be interested in their answer to Alison.
Thanks to Stephen & everyone else for all the info.
Doxycycline has some evidence for other types of cancer, but no evidence that I'm aware of for glioma/glioblastoma. There are multiple animal model studies of minocycline for GBM, and minocycline has excellent penetration into the central nervous system.
DeleteThis is what concerns me about their approach, that it is too standardized, rather than tailored to the unique needs of each type of cancer.
But to be fair, I'll let the clinic speak:
http://www.pharmaceutical-technology.com/features/featurebetter-together-combining-therapies-to-slow-down-cancer-growth-4454747/
https://www.clinicaltrials.gov/ct2/show/NCT02201381
Hi Lisa,
DeleteI did get a reply from the COC about this and pasting in bits below. Have discussed this with Stephen though and I am not sure they are aware of all the animal studies of minocycline but it may be that they didn't look into it as much as they believe it to have worse side effects and this is something they are really trying to avoid. Also, as Stephen did say, it would be impossible to keep up to date with all the trials going on for all the different types of cancer.
Here is what they said about Minocycline:
"Minocycline is a close analogue of doxycycline and shares much of the same biology. Doxycycline generally appears to be better studied and more often prescribed. I’m not sure they are correct that mino has been better studied as this paper points out (please see attached). Go to the discussion. In balance I would still believe doxy to be the best option."
They did attach a paper about Doxycycline which Stephen has had a look at and unfortunately it is only based on an in vitro study. You could ask them to send you this paper or if I figure out how to PM you or post it here I will! However, doesn't mean Doxy is not worth trying and I will further discuss this with them and perhaps send them the Minocycline research to see what they think.
They also commented on the Ibuprofen that is due to be released,
"As for the new form of Ibuprofen, it’s formulation in lipid (fat) is both gut protective, and hence gives rise to less gastric erosion which is a common side effect in this class of drugs, and also more potent as an analgesic and anti-inflammatory by its better access to immune cells which orchestrate this activity."
and also with regards to the blood brain barrier they had to say this,
"Metformin, doxycycline and mebendazole all cross the blood brain barrier. Minocycline does tend to cross the brain barrier better than doxy however it does have a lot more side effects associated with it therefore it is not as safe to prescribe and monitor as doxy."
Hope that helps, I will let you know if I find out more.
All the best,
Alison
Also Lisa, if you'd like access to the Brain Tumor Library on Google Drive, I can add you (just send me an email, my email address is on the User Information page). I can upload the doxycycline study there, or almost any other study that people need.
DeleteThanks Alison & Stephen. I'll send you my email Stephen.
ReplyDeleteAlso, what do you think of Valcyte? My brother has been taking it for nearly 12 mths. Nothing came up when I searched on this forum.
hello,
ReplyDeletecan we khnow how the patient have to take theese 4 medicines?
thanks
Though the 4 medications are the same and used to treat cancer as a metabolic disease, scheduling and dosage is different and based on tumor type, blood work etc. I've been on the COC protocol for 7 months to treat metastatic prostate cancer and it healed all of the lesions in my spine. More info about different tumor types here: https://careoncology.com/faq/
ReplyDelete