Constant headache

[Portugal1]

My husband was diagnosed with a GBM grade 4 in an inoperable position in March this year. He has had radiotherapy and chemo tablets. Also taking a low dose of dexamethasone. His medical team has been fantastic and we are carrying on as best we can. But he has a constant headache which he cannot shift. Any advice would be welcomed.

[MtbQueen]

I have been very lucky with minimal side effects with temozolomide. A mild rash and fatigue (mild) from day 5. It got better each time. Now completing session 5 and 1 to go! Positivity is definitely the answer. All the best

[Tansi75]

Hi Portugal1,

Sorry to read about your husbands situation and his inoperable grade 4 tumour. If you read some of my previous posts you will hopefully find some useful information about the alternative 'anti-cancer' treatments I have been taking since 2010 after being diagnosed with my grade 4 GBM, which was however operable.

Have you cut out all unnecessary sugar from his diet and drinks? Sugar feeds cancer cells, whilst oxygen kills them, which is why I started drinking ozonated water and drops 3% Food Grade Hydrogen Peroxide in a half pint of ozonated water on a daily basis, which I continue to take daily. More details on both in my previous posts.

Most important of all is to keep a positive mindset, a grade 4 diagnosis can mean 'change of life, not end of life'. I found it very useful to view it as so, and as an opportunity to reflect on my life and take it in a different direction than before my illness.

I know how difficult a grade 4 diagnosis can seem as when my elder brother was diagnosed with his grade 4 GBM in May 2009, and nothing can prepare you for it.

However, it is important to remember that 'all life is terminal from the moment it is created'. Just as my life was, prior to my illness and diagnosis in May 2010. It is just as terminal today as it was on the day I was born. For me it was a wake up call to not take life for granted. Both myself and my wife, concentrated on living our lives in the best possible way we can, for as long as that may be, since 2010.

I hope this helps and if you have any follow up questions please ask away.

Stay positive and believe that it is possible to get through this period of darkness in your lives with a possible positive outcome.

Wishing you both the very best for the journey you are both now on. One final point, laugh as much as possible together, as it is a great healer.

Tansi 🙂

[Portugal1 in reply to Tansi75]

Thank you for your kind advice. We are doing the best that we can.

[Reli78]

Hi Portugal1, sorry to hear about your husband. My brother has been using CBD oil for past 18 months and he has never complaint of headaches since. Worth exploring. Good luck

[Portugal1 in reply to Reli78]

Thank you Reli78 I will certainly check up on CBD oil. We are happy to try anything.

[Larcyw]

I'm so sorry to hear about your husband's situation. My husband is now into his 3rd year with GBM. He feels that aspirin has been a game changer for his pain so might be worth taking this. He takes active vitamin D which is hard to get hold of. I believe it can be bought over the counter in Italy, but not over here in UK. 30% of GBMs are known to respond to this medication and a third of these GBMs are found to be super responders in laboratory tests and this research was confirmed in a small human trial a number of years ago. I've heard of people taking high doses of vitamin D instead of this drug but the problem is that many people struggle to convert vitamin D into its active form. Mostly people with autoimmune conditions. My husband had a diagnosis of Crohn's which miraculously he doesn't have anymore.

He also takes febendazole, 444mg daily. (This medication is one molecule away from mebendazole) No breaks. His liver function tests are still healthy and all his bloods have normalised with everything in healthy ranges since introducing this last June when I felt he was deteriorating and having lots of seizures. He's not had any seizures since taking this. He takes Doxycycline every day as well. This is bought from an online pharmacy after a consultation and under the guise that we are going to Kenya. Afraid there are certain risks and lies that I've learnt need to be told in order to get the medication that works. The other option is going to Care Oncology in London Harley Street and use a specialist there. But we have gone it alone for financial and personal reasons. They prescribe 4 off label drugs, mebendazole, statins, Doxycycline and Metformin. He tried statins and Metformin and felt shocking using them so he stopped.

He fasts three days a week. Takes good quality multivitamins and liquid magnesium and liposomal vitamin c which I make him. Drinks only distilled water that we distil ourselves at home. He drinks a herbal tea that I make him daily which is equally weighed amounts of mistletoe herb, centaury herb, mugwort and wormwood. Just 1.5gms in a teabag. There's a study where 5 people took only this tea , 4 times a day and dexamethasone and most of the participants had incredible results and some achieved full remission. I've never understood why more people don't talk about this study because it is remarkable.

I'm afraid my husband is pretty hard work and refuses to give up sugar and he continues to buy sweets so it is a miracle that he is still with us as he was given just 6 months to live and his cancer continues to be stable in his occipital lobe. His first GBM was the size of an egg. He had a short spell on chemo and radiotherapy but had to stop as he nearly died due to his response on chemo.

This journey has made me realise that there's always hope. And many people are living with GBM for many years and getting their cancer stable. I do believe it's possible and I've learnt that the doctors are not always the experts. The patient is. .... and having someone by their side who's willing to research and be with them while they trial off label drugs and find what helps them, is invaluable and I think, essential.

I think you have to have that kind of belief with this. So good luck with your journey together and be strong. I hope you have luck and success.

Larcy x

[Portugal1 in reply to Larcyw]

Hello Larcy, thank you so much for your detailed reply. It is so reassuring that life expectancy can be prolonged. We will certainly try the asprin. A friend has suggested ginkgo biloba infusions. Did your husband have an operation to remove his tumour? Sadly my husbands tumour cannot be removed so we have to rely on medications and natural tablets etc. We have brilliant friends and family which helps. But that said I have days when I struggle to cope which I feel ashamed for as it is 100 times worse for my lovely husband. We wish you and your husband all the best.

[Larcyw]

Thank you and you too. Never feel ashamed for your feelings. It takes a strong person to deal with everything that this diagnosis brings and we too can feel exhausted at times. I try not to let him see that it affects me, but my best friends know how it does and am thankful for their friendship. Yes he had the first one removed and another has grown since. He's not having surgery as he doesn't want to continue to battle and they did say it was operable but would leave him blind, so he made the devastating decision to not undertake surgery. He's decided to use the treatments and things that have helped and let nature take it's course. Thankfully he remains well and still has his sight. Much love to you, your husband and family.