I was diagnosed with Glioblastoma in October 2020. I was not eligible for surgery as the tumour was diffuse. I had the normal Radio / Chemo treatment followed by 1 year of 5day per month chemo. I also had one session of Dendritic Cell Immunotherapy with Immacura.
I'm living a normal life, walking, training and trying to be normal. I am following a healthy diet and staying positive.
I'm happy to talk about my condition and exchange ideas and treatments with anyone suffering or supporting someone with GBM.
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popG
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I'm sorry to learn about your husband's diagnosis. I am glad he is coping well and I wish him and you all the best.
Our experience working with Immacura has been mixed. I'm very pro the idea of immunotherapy and am sure this will contribute towards a future cure. There seemed to be no downside to trying this. I did my research and found no negatives so I went forward with it.
Although the company was outside the UK they had UK nurses that administered the therapy so we didn’t need to travel. This was also during the lockdown period which meant we didn’t need to worry about corona virus.
We had a an online consultation with a doctor explaining the whole process and how it works. This was a long dialog in stilted English and sometimes rambling but informative. He also recommended a nutritional regime which I follow today. As a result of this I am dairy free and wheat free.
2 nurses came to the house and took blood samples which were taken away to produce the serum (in Germany) with my antigens. Then a few weeks later they came and injected the serum into my groin.
The whole process was simple and pain free. That’s all well and good and we were happy. The downside is that we didn’t get any follow-on treatment. In fact our efforts to communicate and ask questions about the results was frustrated. When we finally got a consultation there was just more rambling conversations and more advice on nutrition.
This is an experimental technique with no guaranteed outcomes so I don’t know if this was helpful or not. The total cost to us was €30,000.
I would encourage you to do your own research. My treatment was a year ago and their situation may have changed. I’m still in favour of immunotherapy.
I hope this has been useful and I’m happy to answer any other questions you have.
Hi PopG, thank you for your positive post. It's so great to hear that you're doing well!!!Do you mind me asking if your GBM methylated or unmethylated.?
How did your find radiotherapy? Were you taking any supplements during? My husband is unmethylated and he just started his radiotherapy 3 days ago.
My GBM is methylated. I didn't take any supplements at that time. I depended on the anti-sickness tablets which sorted out any nausea.
I didn't have any problems apart from the initial application of the mask. I coped with the obvious claustrophobia but the inability to open and close my eyes due to the tight fitness of the mask gave me anxiety. We resolved this by removing the plates from underneath my head which gave me a little extra space.
For anyone in the process of fitting for a mask I would recommend holes for the eyes - I don't see why they don't do this routinely.
Hi, I had 80% of tumour removed. Started radiotherapy. Then on chemo. On the 4th day of taking it, they stopped chemo. My liver so today when I had seen OncologistHe said the level had gone to 5, he said it should be 1, but I would never get to 1. My liver would be level 2. So now I am starting on a stronger Chemo tablet today. Since bring off Chrmo I have had sharp pains in toes fingers and pi s and needles. He said my nerves maybe repairing. I get pins and needles in my hand. Have you had any of this. Plus I was really sick when I first started chemo.
It feels like I am trapped in a nightmare. I really hope I can make this!
I was in similar pain at start, but it went up/down as the treatment went along. During the 6 months chemo, feel good/ok take tabs then start to feel rough, just start to feel ok and it's time for the next intake. Just learn to slow down and take it easy, it helped me.
I'm glad to hear that you're doing so well, it gives hope to me and I'm sure others too
I was told median survival was 12 months when I was told the probable diagnosis pre- surgery
Can I ask whether your immunotherapy was privately funded or via the NHS? Did you need a tissue sample in order to have this treatment? As this is what I've been told
My immunotherapy was privately funded. It is not currently available on the NHS. No tissue sample was needed. The therapy only needs a blood sample which they take. The whole process was simply managed at home. For more info about immunotherapy you might like to read the story of Nicola Nuttall gofundme.com/f/doing-it-for... who took a different route for immunotherapy.
My father recently got diagnosed and we want to start chemo and radio as soon as possible. How was your experience with it? Is it very difficult being on chemotherapy?
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