Comments on: I gots to know https://www.raggedclown.com/2022/07/14/i-gots-to-know/ forget about today until tomorrow Sat, 30 Dec 2023 15:53:53 +0000 hourly 1 https://wordpress.org/?v=7.1 By: Ragged Clown https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96937 Thu, 04 Aug 2022 13:02:10 +0000 https://www.raggedclown.com/?p=5592#comment-96937 In reply to Beverley Birleson.

I’ve read a few studies that say PC (PCV without vincristine) has almost all of the benefits of PCV but with far fewer side effects. Only good for oligodendroglioma though.

TMZ is the chemo of choice for astrocytoma. It is easier to tolerate but less useful unless you have MGMT promoter methylation.

There are practically zero drugs on trial for low-grade gliomas but a few for glioblastoma.

The only trial that shows promise is one for a targetted therapy if you have the (rare) BRAF v600 mutation but it’s not yet available in the UK.

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By: Beverley Birleson https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96936 Thu, 04 Aug 2022 06:40:03 +0000 https://www.raggedclown.com/?p=5592#comment-96936 I enjoyed reading your blog & found it informative. The only thing I’d like to add is that PCV has been around many years now without a change in it’s direction. This is literally the only choice. There are a few options on the horizon that are hopefully going to be available soon, so search for trials that you could be included on, as you don’t want this to be your only hope

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By: Vintage Tastes | Ragged Clown https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96919 Mon, 01 Aug 2022 12:36:21 +0000 https://www.raggedclown.com/?p=5592#comment-96919 […] I gots to know […]

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By: Graham https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96869 Sat, 16 Jul 2022 14:04:19 +0000 https://www.raggedclown.com/?p=5592#comment-96869 In reply to Ragged Clown.

If they want to they can assume a diagnosis- it is a bit like they were doing with your epilepsy diagnosis.
Some centres are better than others – my Torbay oncologist told me that I was the only patient she saw annually for a
check-up that required no treatment.
I think some parts of NHS are more regimental than others.

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By: Ragged Clown https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96868 Sat, 16 Jul 2022 13:33:14 +0000 https://www.raggedclown.com/?p=5592#comment-96868 In reply to Graham.

To be fair to my oncologist, she didn’t actually say she couldn’t take me on without a biopsy and I never really asked her anyway.

NHS policy is to assign you to a surgeon initially and then assign you to an oncologist after you have had surgery (most people with brain tumours have surgery). I am in a weird spot since I am not having surgery.

I’d guess that, if I really wanted, I could transfer to the oncologist but there is very little that she can do for me without a biopsy anyway.

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By: Graham https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96867 Sat, 16 Jul 2022 12:50:22 +0000 https://www.raggedclown.com/?p=5592#comment-96867 Hi Kevin
You will have to decide for yourself what to do including do nothing. Quality of Life today vs Quantity of Life in the Future is a balance that changes with age. Do I have a working parachute when I jump out of the aircraft?
I am less happy that your oncologist is sort of blackmailing you in not taking you on without a biopsy.

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By: John Dowling https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96858 Thu, 14 Jul 2022 14:33:31 +0000 https://www.raggedclown.com/?p=5592#comment-96858 Hello Kevin.
You sound in great spirit, always a great sign.
If it helps, I try to tip the balance for success, if I need treatment that could benefit my wellbeing, I would do it while I was stronger, recovery comes much quicker the younger you are.
Serendipity can be wonderful, however you won’t find gold unless you look for it.
Bonne courage my friend
Johnboy France

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By: Rosa May https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96856 Thu, 14 Jul 2022 13:59:37 +0000 https://www.raggedclown.com/?p=5592#comment-96856 You knows what is best for you! Probably!
Love to you and G x

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By: Claire ATX https://www.raggedclown.com/2022/07/14/i-gots-to-know/comment-page-1/#comment-96855 Thu, 14 Jul 2022 13:59:02 +0000 https://www.raggedclown.com/?p=5592#comment-96855 Luck be a lady tonight!
Let’s keep this party polite
Never get out of my sight
Stick me with me baby, I’m the fella you came in with
Luck, be a lady tonight.

From Guys and Dolls, Frank Loesser

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