Hi,This is my first post. My brother has recently been diagnosed with a Glioblastoma grade 4. It's been alot to take in as I'm sure you can all understand. He starts Radiotherapy and Chemotherapy next Monday 22nd July. I have a few questions that I hope can be answered.
Firstly I want to say how incredible you all are. I've read some really positive posts on here which gives me hope. Thank you for sharing your story's.
I want to make up a goodie bag for my brother that will help him through the next 6 weeks of treatment. Please can I have some ideas from you of what really helped you through your treatment.
I'm starting to look into possibly getting him a second opinion. From what I've read it could delay treatment. Has anyone gone down the route of getting a second opinion? What were the out comes?
Also has anyone changed their diet in any way to help with recovery. I've heard that cancer cells love sugar and how being on a sugar free diet could help.
One other thing, has anyone been on any trials that have worked and would recommend.
Thank you for spending the time reading my post. I'm sorry for all the questions, I'm just looking for some support and help. Thank you again.
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Melon44
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Hi, my husband was diagnosed in March 23 with stage 4 glioblastoma. He had surgery then radiotherapy/ chemotherapy and then just chemotherapy. Regarding a goodie bag, water and small snacks, there can sometimes be a wait for machines or a backlog and a lot of sitting around. Something to while away the time.
Have you looked at anything from ahead of the game foundation? A charity set up by a guy with the same diagnosed who has survived 5+ years. Lots of info re alternative therapies, diet, fitness etc
Thank you soo much for replying. I haven't heard of the head of the game foundation. Will take a look, thank you for letting me know.How is your husband doing?
He isn't doing too bad, 18 months on and they think the tumour might be progressing again so going to discuss more surgery nxt week. Staying positive and taking a day at a time. He Is 57 and was fit and healthy before all this but one thing he has done is kept getting out and keeping as active as he can, even when he has just wanted to stay in bed he has pushed himself. We both work in mental health and have done mindfulness and breathing exercises to help with anxiety and very much adopted the mentality of one day at a time and putting our energy into things we have control over as so much is out of our control. I wish you and your brother good luck with the road ahead and be kind to yourselves xx
Thank you for responding. It's such a difficult journey that we are all going through. I just want to be with him all the time but also know how important it is that he spends time with his family too. Before is opperation he got a book about the bennifits of breathing through your nose. I think he would be up for meditation too, it might help him sleep at night. Do you recomend any apps to use? Maybe something he could listen to whilst drifting off to sleep. Thanks again for replying.
There is an app called insight timer and it has every meditation you coukd want to cover everything. I use it a lot and I'm sure he could find something to suit him.
Sorry to read about your brother, has he had his tumour removed?
Regarding diet, you are right, sugar does feed cancer cells, so cutting out all unnecessary sugar is vital. I expect your brother has been given the standard advice of 'he can eat anything he likes', if so, please ignore it.
He should include the following foods in his diet which have anti-cancer properties - pecan nuts, blueberries and turmeric spice. I have included the first 2 in my breakfast since May 2010 and initially turmeric every time we had rice in the first couple of years. Green tea also has anti-cancer properties, but it was too bitter for me.
I have also been taking Higher Natures Immune Plus tablets, which are designed to boost the immune system and their Complete Omega tablets, which are good for the brain since May 2010 and do recommend them, as they have worked for me. Taking the maximum daily dosage of Immune+ when going through treatment, especially chemo.
Regarding my use of ozonated water I drank a pint of it when taking my chemo tablets in 2010 and 2015-16 when on the phase 1 SATIVEX clinical trial. Drinking a pint of water helps the body to digest the chemo quicker and I also took my chemo tablets before going to bed, so I could sleep through any potential side effects.
I have always bought my 3% Food Grade Hydrogen Peroxide (Multi-form) from Bobby's Health Shop see link below:-
Using the drops in a half pint of ozonated water - I have attached a photo of the Sota machine I use. Starting with 1 drop per half pint drunk before breakfast, dinner and tea, building it up to 5 drops per half pint of ozonated water on a daily basis.
The most important thing your brother and family can do is to stay positive and believe that it is possible to get through your current situation with a positive outcome. Spend time talking to each other, laughing as much as possible (it is a great healer) and making plans for the future e.g. what would he like to do after his treatment?
Something to consider when he is receiving his radiotherapy is turning his trips to hospital into a mini-break or day out, if he feels ok. This is what I and my wife did to break up the cycle of just going to and from hospital for treatment. We would stayover a couple of days in our favourite hotel in Manchester, sometimes go to a gig or do some retail therapy.
Doing so, helped us to get on with living our lives in the best possible way we could, each and every day.
An important question to ask his Oncologist, if he/you have not already thought of this, 'is there a clinical trial available which he could be considered for'? You can find more details about possible clinical trials on the Brain Tumour Charity's website, which also contains a lot of information you will both find useful.
I hope this helps, and by all means ask any question you or your brother may have, and I will reply.
I know it is a difficult time for you all, but please do remember that 'all life is terminal from the moment it is created.' It might be useful for him to consider his diagnosis as an opportunity to reflect and take his life in a new direction. In order to survive any traumatic event, you have to have hope. Stay strong, live life in the best possible way you can and believe that you can get through this together and always keep one eye open towards a positive, long life together for however long that may be.
Wishing you both the very best for a successful round of treatment and a positive outcome.
Hi,Thank you for replying. He had an opperation a couple of months ago and they managed to remover over 90% of the tumour.
Yes that's pretty much the response he got. They said not to go on a diet, he asked why and they said cos we don't want you to loose weight and become weak! I think diet is the wrong word for it. I explianed to him how we can't change the cancer, but we can help change the environment that it is in by changing the way you eat.
Do you drink ozonated water all the time or just when you were taking the chemo tablets.
My brother is only 45, he is young and strong and I'm going to do everything I can to help him stay positive. Speaking to people like you really does give me hope. You have taken the time to reply and have already given me soo much information. I can thank you enough.
It's normal for the surgeon not to remove all of the tumour, as in my case. They err on the side of caution to not cause any unnecessary extra damage to the brain. Well done for the advice you have given to your brother. At the moment the most important thing for him to do is to boost his immune system, so eating the right foods is vital. He should also listen to his body and rest/sleep when it tells him to, which is part of the healing process.
I do drink a pint of ozonated water when taking my anti-epilepsy tablets, which are taken twice daily. My epilepsy was due to the development of my second tumour in late 2014 prior to the tumour being removed. I was also drinking it when going through radiotherapy. The advantage is that oxygen kills cancer cells. The side effect of drinking it and the 3% FGHP (multi-form) is the need to wee a lot more, which I view as flushing crap out of my system. My main use of ozonated water is now through still taking the drops of FGHP on a daily basis.
As your brother is in his mid 40's, I appreciate that one his main concerns at the moment might be his desire to maintain his fitness or try to press the 'reset button' to carry on as before his diagnosis. From my experience that would be a mistake, I think too many people start following a rigid exercise regime far too early without giving their body and brain time to recover properly, which I think requires at least 12 months. I started swimming on a regular basis in 2010 and do believe it may well have been a contributory factor in the growth of my second tumour.
So each day one at a time, one step at a time, the only thing that needs to be exercised is the brain. I did this by doing crosswords, jigsaws - the Wasjig ones are excellent, reading, playing the game on my mobile phone, listening to music etc.
During my first chemo, I spent a lot of time snoozing on the coach, whilst catching up on my recorded episodes of Stargate and SG Atlantis, and listening to episodes of the Goons and the Navy Lark for laughter.
Hello, thanks for reaching out to the group. I am really sorry to hear about your brother’s diagnosis. It’s very understandable that you have questions and want to find out as much as possible following this difficult news.
It’s lovely that you are looking to support your brother whilst he is undergoing treatment and I’m sure members of the group will be able to make some practical and helpful suggestions.
Getting a second opinion –
This is something which many people do and fortunately, the process isn't as daunting as you might imagine. In fact, within England, this right is guaranteed in the NHS Constitution and also exists in Wales, Scotland and Northern Ireland.
Sometimes asking for a second opinion can lead to you being offered:
• a different or wider choice of treatments
• a newer drug or treatment that’s part of an ongoing clinical trial
• or they may support the same treatments that were previously recommended.
It’s important to remember that getting a second opinion might postpone treatment and seeing another doctor might mean a longer wait.
Please also have a look at the Tessa Jowell Centres of Excellence - these are centres that have been assessed on number of criteria including patient experience feedback and have been found to meet a high standard for brain tumour treatment and care. Details of these centres can be found via the following link: tessajowellbraincancermissi...
Diet - We know that this topic does generate a lot of discussion in our community.
For anyone considering making changes to their diet, firstly, we always recommend that you should only do so under the supervision and guidance of your doctor and a trained dietitian. If you are thinking about consulting a dietician, your healthcare team should be able to help you access the relevant professional though the NHS.
Clinical trials –
As other members have mentioned, we do have some useful information around how best to go about researching clinical trials on our website. Please specifically see information on an organisation called My Tomorrow’s who can help to search on your brother’s behalf. thebraintumourcharity.org/b....
I hope this helps with some next steps. Please do not hesitate to get in touch with us if you’d like to talk anything through. You can give us a call on 0808 800 0004, Monday – Friday, 9 - 5.
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