Re GBM4 & Care Oncology Clinic

Hi  and welcome to the Online Community. I just dropped by and noticed your post has not yet received an answer. 

I've a different type of cancer so can't help but I think it would be a good idea for you to join the Glioblastoma Multiforme Brain Tumour group where some of the members may have knowledge of the Clinic you mention.

Sending you hugs, B xx

Thanks Mrs BJH - I've had a really helpful reply from a MacMillan Nurse.

Best regards

Dawn

Sorry, I hardly ever go on here but I've got a GBM4 and have been taking the COC protocol for 5 months now, so happy to answer any questions x

Hi Poody - thanks for your note. Are you still having chemo? How are you feeling on the CoC meds?

My husband is due to have his last round of Temozolomide next week and we are looking for the next thing to help. He was diagnosed 9 months ago.

Thanks Dawn

Hi, I had my last temozolomide last Nov having been diagnosed in the Feb, and I wanted to know what I could do to be proactive and not just wait til my tumour grew and I needed more chemo. I was feeling well in myself after the chemo so that made me even more determined to find what was available. We looked carefully at the COC and decided that it wasn't too costly, especially as you don't have to go to London to see them as it's all done by video calls, it's not in the same league cost wise as going abroad for treatment and when we had the initial call with our allocated doctor he went completely through what you take and why. They are doctors who also work in the NHS or in research at university, so we felt that it was worth a try. We understand that it's not a cure, but if I can extend my life and still have a good quality of life then what's I'm hoping it will help me do. All the tablets have been fine. If you want to chat privately please do. I hope that's helpful to you both.

The Metformin gave me a bit of a bad stomach for a few days but then it settled down. The nurses are really helpful if you need to ask about side effects, she reassured me to try to stick with it, and it worked. The other meds have been no problem at all.

Thanks Poody for all this helpful information. Can I ask if you are on steroids and if so what dose. I think I read that you can only be on 3mg a day on the CoC trial - my husband is currently on 4mg. Many thanks. 

No, by the time I started COC i was off the steriods. I'd ask why your husband is still on them, only because I was taking them from Feb 2020 until after my radiotherapy ended in may, and the reduced and stopped them in August. So by the time I was on the 5/28 days chemo I had stopped taking them. My neurologist said not to take them for long if possible. The oncologist didn't really seem so bothered but was happy to see if reducing them still meant no seizures, which luckily it did. So in short...! I would ask if they can be reduced now with a view to coming off them completely if possible. They aren't nice things to be on for long. And at least he might be on the lower dose to be able to have the COC