GLIOBLASTOMA

[dicky70]

GLIOBLASTOMA

To my fellow sufferers to whom I convey my deepest heartfelt sympathy with a massive dose of positivism, good luck to you all. I had my surgical operation on the 4th October 2022. The prognosis revealed a glioblastoma.

I'm researching, there are positives, especially about an anti-cancer drug called Selinexor.

There are a lot of plusses about the KETOGENIC diet, what are you doing regarding a diet.

Best regards to you all.

Alan

[Mad4cats]

I am in a slightly different position, having been diagnosed with multi focal glioblastoma towards the end of August this year.

I am currently following a ketogenic diet as there is limited evidence in mice studies that it potentially enhances the effects of radiotherapy. I am working in conjunction with a private dietitian and monitoring blood glucose and ketones daily. My medical team can't 'recommend' it due to lack of evidence but are willing to add the blood tests the dietitian requires. My GP can't supply all the ketogenic foods that my dietitian prescribed, but has been supplying other ways, including supplying the l as meets, sharps box and testing strips.

I'm also exploring statins - again my medical team won't prescribe due to lack of evidence

Best wishes

Camilla

[TD2022 in reply to Mad4cats]

Hi Camilla

How are you doing? My husband started his radiotherapy last Wednesday and we are interested about keto diet. Can I ask if your private dietitian is on Bupa?

My husband is glioblastoma IDH-1 wild type unmethylated xx

[Mad4cats in reply to TD2022]

hello, I'm afraid I don't know whether she's on BUPA - it was £150 for the initial consultation and then £650 per month for designing the diet and additional information

I always suspected that once I stopped radiotherapy I would stop the keto diet (for various reasons). Partly because of the cost but also because a quality versus quantity of life consideration.

Her name is Jen Carroll and I think you will find her with a Google search using her name and 'the keto dietitian'

Best of luck x

[TD2022 in reply to Mad4cats]

Hi Camilla, thank you for your response. We had a consultation with Dr matt williams yesterday and he mentioned keto diet. I'll Google Jen Carroll. Thank you

[Mad4cats in reply to TD2022]

I have completed my 6 weeks radiotherapy and today started my month 'off' before starting again on oral chemotherapy (which I gather from others posts on here will be at a increased dose)

I am not working at the moment and suspect I won't return

I am tired and don't seem to do much each day and need to rest more often which I'm adjusting to

As I've had long covid symptoms for the past 2.5 years I've become used to managing fatigue but still find it frustrating

I used to be a regular runner, but currently find I can only manage once a week at parkrun. However this event has for me always been as much about community and spending time with friends I am trying to focus on this rather than focus on time 🙂

I am also wondering if symptoms will increase once I start on the increased chemotherapy dose

I feel fortunate that I haven't had many side effects other than fatigue and significant hair loss - no nausea for example

[Buffalolove in reply to TD2022]

Im sorry as my husband was dx on Feb with a grade 4 Glioblastoma sane type with no gene mutation. He had a craniotomy radiation and chemo. He is starting his second 5 day cycle of TMZ and also started optune. Have you looked into any FDA studies with vaccines? Thank you very much for your support as you are also going through a difficult personal journey.

[Tansi75]

Dicky70,

Well done on having a positive approach to your diagnosis and continue living your life, as long as that may be, in the best possible way.

I have placed a variety of posts on the Brain Tumour Charity's BRIAN APP, which you may find useful about diet and alternative treatments.

Stay, safe, well, positive and always look on the bright side of life - cue a certain song and Travis Tritt's 'It's a great day to be alive'. 😊

[15773]

So sorry to hear about your diagnosis; how fantastic that you have such a positive outlook.

My husband (68) was diagnosed with GBM4 in December 21 and part of the tumour was removed, followed by radiotherapy and TMZ. He is still on TMZ, (7th cycle).

Like you he has demonstrated courage and positivity in coping with this cruel diagnosis. Since then he has raised £65k for a brain tumour charity (JKBTF) including 21km walk, tennis tournament etc. We have travelled Italy by train and he is supporting a charity project at St Georges hospital.

Yes, he feels ghastly and exhausted when he's on his chemo cycle. Unfortunately his Glio is IDH-wildtype. Despite knowing time is not on our side, we are throwing all our energies into making happy memories

I'd be really interested in your research into Selinexor. I had understood that it was at stage 2 trials in the US but little advancement in the UK

We are focused on diet and he has cut out sugar as much as possible and we tend to eat lots of oily fish, green vegetables, fruit and nuts, especially pecans. The red wine has remained in the diet! (everything in moderation)

It's been said on this page many times, positive mindset is so important. None of us know what will happen in the future but I am sending lots of positive thoughts that you will have the fortitude to enjoy living your best life