I've been reading some of the stories on here, firstly I just wanted to say how brave everyone is and wishing everyone the best for there journeys with this awful disease
My Auntie was diagnosed with a GBM just before Christmas. She had a little left sided weakness just before surgery (tumour in right parietal lobe) but since surgery she can barely use her left arm or leg, not sure how much of the tumor was successfully removed yet.
She is waiting to hear about further treatments, but given the diagnosis I've been doing some research into the drugs in the title, and thought to ask if anyone has used these in addition to the usual chemo and radio?
I know it seems experimental, but it appears there have been some studies about the effectiveness, but I'm unsure where to go in trying to get access to this treatment.
Thanking you all in advance
Hi bubbaflash and welcome to the online community
I'm very sorry to read that your auntie has recently been diagnosed with a GBM and I know what a difficult time this will be for the whole family.
I don't have any personal knowledge of the drugs you've mentioned but I noticed that your post had gone unanswered. While you're waiting to see if you get any replies you could type, individually, the names of the three drugs into the the search bar in this group. This will bring up any previous posts which mention them. You could then respond to any of the more recent posters if you wanted to ask them any further questions.
If your auntie is considering taking anything that hasn't been prescribed by her oncologist it's very important that she mentions it to him first as some drugs can have an adverse effect when taken in combination with others or can reduce the effectiveness of treatment the oncologist is using.
Wishing you and your aunt all the best
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Hello I have lived 4 years plus with this and a small recurrence . 2nd surgery dec2019 had gliadel wafers inserted ATM I am clear at MRi . As for menbendazol, metaformin use and doxycycline you would need to speak to to your oncologist , most are against using these fenbendazol is another people use after Joe tippings was left clear . Most repurposed meds would have to be obtained privately and generally the main stream medical world as there is research ongoing byt most are small scale no major clinical trials .
You should read my cancer rocks blog before going deeper .
I have been lucky so far (if ending up with a paralysed right hand is lucky after 2nd surgery) no physio as yet , thanks to covid ! Still stuck in steroids. 4 mg Dexamethasone, awful stuff I want to see a endocrinologist.
So mostly done SOC , take loads supplements that I researched,.stick low carb diet to keep as well as possible .I take berberine similar effect to keep blood sugar even. There are a few supplements that do the same job as metaformin, if you take fenbendazol or menbendazol you cannot take vit c at same time . It was seen at 1st Good to have with vit E . That has been taken out now. As vit E can build up toxic levels.
I have used fenbendazol protocol but will save as back up.if I get regrowth and told no further help .
Hope this helps a bit .
Hi, I have GBM stage 4 and the prognosis isn’t good, I was diagnosed in may and they have said 14-18 months. I have 3 your children so trying to find ever possible treatment for myself. About two months ago we contacted a private clinic in London which I’ve started on their repurposed medication it’s the same medication mentioned above, I can still do chemotherapy whilst on this medication. I am due to have an MRI scan in a couple of weeks I’m really hoping that this has made some kind of difference.
Who did you see in London? I'm looking at the Care Oncology Clinic that offers the COC protocol.
Hi Joe, Sorry for the late reply. I have got a meeting with COC next week, I will find out the name. I will have been on it for 3 months at the end of February, so really hoping it has done somethin .Best wishes
Oh that would great thank you! My father who has an inoperable GBM4 since august is now receiving Metformin and Sativex as additional drugs that might help.
Have you been offered any addtional treatements that might work? CeGat? Ipilimumab?
Many thanks again and best of luck!
Sadly Ive got the same jumped on me out of the blue 12 weeks ago, operated on three weeks ago and this week started gradio and kemo medication,,, Read your repurposed medication and hoped that has given you some greater optimism, question from me is it is worth trying to get on the same situation as ive been opted out another 9 -12 months after adopting the NHS optimism and treatment.
Best, Delmar 789
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