Hi, I've got a low grade brain tumour ( I dont remember the big name sorry) diagnosed in 2013 had practical surgery couldn't remove all... I developed epilepsy... now 2020 we've done radiotherapy and I'm now on 4th cycle of PCV or PVC very sorry bad memory due to tumour and being on chemo. I just wanted to hear about other people's experiences with this chemo really. I haven't had much communication and community due to covid. So it feelings a bit like me and my partner are sort of guessing. Obviously I check it with the chemo helpline if needs be and i have phone calls with my Oncologist. But I think it would help to hear what other went through. Sorry if this doesn't make any sense I'm only on day 13 of this cycle so my brain is everywhere.
Thankyou very much I dont know if anyone is going to respond but thankyou if you do :)
Hi and a very warm welcome to the online community
I'm sorry to read that you were diagnosed with a low grade brain tumour in 2013 and that you feel that you and your partner are left guessing about your treatment. Do you have a CNS as he/she should be your point of contact between you and your hospital team? They can usually look things up for you and help with any questions that you might have.
I don't have any experience with PCV myself, as I had a different type of cancer, but I have found this information about it on the Macmillan site.
As the community is divided up into groups I'm going to recommend that you join the low-grade brain tumours group where you can ask questions, share experiences and get support. If you copy and paste your post from here into a new post there you may well find others who are currently on PCV.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post questions in the same way that you posted this message and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful 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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"Never regret a day in your life, good days give you happiness, bad days give you experience"
You haven't done anything wrong , I just think you might get the information you need from people in the group I've suggested.
If you need any help finding your way around just give me a shout.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
