CeGat: Vaccine against Glioblastoma?

Hi Joe

I typed CeGat into the search bar but haven't found any mention of it anywhere in the community I'm afraid. Your consultant or CNS would probably be the best person to ask as they have access to all your medical details and will know if something this German company is offering would be relevant to you or not.

When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi All,

Would love to know the emerging Treatments that long term survivors have pursued beyond SOC with Success?

I came across the following:

Repurposed Drugs:
The COC clinic prescribes medications such as atorvastatin, metformin, mebendazole, and doxycycline.
COC protocol study (median survival of 26 months): www.frontiersin.org/.../full
Some oncologists (including Prof Angus Dalgleish in the UK) also offer other repurposed drugs which includes Low-Dose Naltrexone, CBD and Sativex (cannabinoids).

Immunotherapy:
CeGat peptide vaccine, IOZK and Immucura are quite often mentioned. Has anyone had any success with this one?
www.mdpi.com/.../pdf
I found 4 blogs of "Long term survivors" on the CeGat and IOZK vaccines here:
bottlemeupbuttercup.com/.../
rebeccadevine.wixsite.com/beckybattles
www.caringbridge.org/.../journal
www.doingitforlaura.com/tips-and-advice

Latest update I was communicated by CeGat representative: "50 GBM patients currently took part in CeGat peptide vaccine and approximately 30% are “top performers”, but many of the 50 are still alive."

Patrice Surley confirmed that "she has had patients with CeGat for 4 years and the first person she saw go there is still living, as are most of the patients that have received therapy there and she has seen a dozen patients go there"

Roger Stupp: "The checkpoint inhibitors failed to improve outcome in 3 large controlled trials, but may have a role in select patients and in combination with CeGAT vaccine (but again far from proven, but usually [!] safe)."

Checkpoint inhibitors:
Many also mentioned checkpoint inhibitors however no large study have found evidence these work in Glioblastoma to date. Has anyone had any success with these?
www.nature.com/.../s41591-018-0337-7
www.nature.com/.../s41571-020-00460-2
www.nature.com/.../s41590-019-0441-y
pubmed.ncbi.nlm.nih.gov/.../
www.nature.com/.../s41586-018-0792-9
acir.org/.../the-timing-of-priming-and-pd-1-blockade

Similar trial in the US (vaccine + checkpoint inhibitor) : clinicaltrials.gov/.../NCT02287428

Supplements:
Many people suggest to see Patrice Surley who mentions supplements such as Vitamin D, boswellia, curcumin, melatonin, resveratol, grape seed extract, green tea extract, stress B, Legasil, probiotic, berberine & lactoferrin

Technology:
Optune has some proof that it extends life by a few months however it is extremely expensive

Others:
Physical Activity

Hi, I’m currently so a similar path following GBM regrowth, but at the very beginning at the process, so I’m afraid I don’t know anything more than you already know (in fact I’ve learnt a bit from your post).

it would be really useful to find a group in the UK to get info from. There is a Facebook page that has a fair bit of info, but a lot of people are not in the UK.

Thank you, that is the page I am on already, but I find a lot of the posts are not UK patients, and so many things are different I was hoping to find one that is purely UK.

it is not a nationalist issue, it’s just that I am getting so depressed when I keep finding positive posts just to find they are all based on things not available to UK people.

Hi Joeseph - thanks for this interesting post. I'm a firm believer that when a cure is found for all cancers - immunotherapy will play a big part. Im currently in talks with immucura for my metastatic colon cancer. Do you know of any specific research regarding there results or other current immunotherapies specific to treating colon cancer?

Hey Andy, how did you get one with the Immucura? Looking at getting in contact for my mum who has stage 4 bowel cancer. Any information from your talks would be soooooo so helpful!! We feel like we need all the help we can get! X

Hi Diamond - I'm sorry about your mum :( I've had my medical records examined and an initial consultation with them but that's as far as I've got with it for now. I've started the targetted treatment of Centuximab and Encorafenib and my oncologist has asked that we give this treatment 3 months to halt things. If I have progression then its something I will seriously consider. It is expensive though - 30plus grand and I cant find many success stories at all. They tell me it works on colorectal cancer patients with the BRAF mutation but they would say that wouldn't they?? If your doing it - you need to request your mums medical records ASAP so you can send to them for assessment - this whole process can take weeks. I found my hospital weren't willing to give mine up easily but ultimately they cant refuse. Tell them its for a 2nd opinion and you can jump the que. Please send me any success stories you find and keep me updated on how you get on and good luck