I am Ádám Pásztory, 53 years old, father of 4 children.

I have been advised to briefly summarise the case at the beginning, because this is a very detailed story down here, but also a very long one. So, in three sentences, my life has been unexpectedly and completely shattered by a disease, a type of brain tumour with very bad prospects. After the darkest moment, hope has dawned, and there is an experimental clinic in Germany where real and serious results are being achieved with immunotherapy tools to cure Glioblastoma. The treatment is very expensive, the health fund manager can't support it, so now we're into the story of how €85,000 in donations will come together? If it does, or if you read on, the story gets even longer.

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The disease

In August 2024, I started a never-ending tsunami of headaches, which escalated to the point of visual disturbance and fainting, and at the end of which, on 6 September 2024, a CT scan ordered at the emergency room of St John's Hospital revealed that I had a brain tumour. On September 9, 2024, my attending physician, Dr. Levente Ilyés, performed a successful, uncomplicated surgery on me. The recovery from the surgery was quick and successful, but that was not the end of the story. On September 24, 2024, during the suture removal, the pathology results were presented: I have Glioblastoma, NOS (WHO grade 4). The doctor informed me that the average survival time for this disease is 3-4 months without oncological treatment and 10-15 months with treatment.

Why is the prognosis poor if the tumour has already been removed?

Glioblastoma grade 4 is the highest grade of malignant brain tumour and unfortunately, even if surgeons successfully remove the entire visible tumour during surgery, it is so aggressive that it almost always returns.

1) Due to the nature of the tumour: glioblastomas can spread extremely rapidly to other parts of the brain, and there are often microscopic tumour cells already at the time of diagnosis that cannot be completely removed during surgery as they spread throughout the brain tissue. These cells are not always visible on imaging scans, but the tumour may later grow back and return.

2) Very aggressive growth: glioblastoma cells divide very rapidly, so the disease often recurs even if the surgery was successful.

3) Limited treatment options: although radiotherapy and chemotherapy are available, these treatments are not always effective enough to completely kill all remaining cancer cells. Glioblastoma cells are often resistant to these therapies.

This is why patients are still at high risk even after the tumour has been removed.

Overall, statistics show that the survival time for people diagnosed with glioblastoma is usually 10-15 months, even after successful surgery and further treatment. While there are individual cases where someone lives longer, these are so rare that they are listed by name on Google as medical miracles.

Immunotherapy - the hope of a lifetime

After the initial shock, a friend connected me to a man my age who was diagnosed with the same stage of the disease in November 2023. This is Zsolt, who told me that in addition to oncology treatment, he is part of a programme at a German clinic that treats people with cancer using a treatment called immunotherapy. The procedure evolved from the Nobel Prize-winning method of Canadian immunologist and cell biologist Ralph Steinman, who won the Nobel Prize in Physiology and Medicine. The treatment method used by the clinic and a detailed description of the great results so far have been published in Nature, the leading source of scientific research. The importance of the procedure is demonstrated by its approval by the FDA, the US Food and Drug Administration.

In layman's terms, it is the so-called neoantigen-specific T-cell response, triggered by a vaccine specifically designed for the tumour or the genetic characteristics of the patient, which 'wakes up' the patient's immune system to fight the invaders. This means that, after clinical trials, patients are given a personalised medicine, a vaccine, specifically tailored to their own genetic profile, produced with the same care and under the same manufacturing conditions as a commonly used medicine.

Survival rates

According to the clinic's statistics, for all those treated, there is a 95% chance of survival of at least 32 months, but at my age and at the current stage of my disease, the statistics so far show that I have a good chance of being one of the patients who have been with us for 60 months and hopefully for a very long time! The number of patients who have died in the meantime includes those who have died of other causes (covid, other diseases, age, etc.), and is 54% of the total number of patients treated.

Costs

Due to the experimental nature of the clinic and the complexity, personalisation and quality of the procedure, the cost of immunotherapy treatment is high. The basic treatment costs 80,000 euro. I have to travel to the clinic in Germany for a total of 11 treatments, usually accompanied by a chaperone, with an estimated travel and accommodation cost of an additional 5,000 euro.

Is there no such therapy in Hungary?

There may well be great hopes for immunotherapy in scientific and medical circles, but in my country this method and technology is still in its infancy, and there is no complex, effective oncological treatment available comparable to the German procedure. In fact, although there are several clinics in Europe and overseas that use some form of immunotherapy, looking at the methods and results of the clinic, it is one of the most progressive, personalised (immunotherapy) treatments for cancer and glioblastoma in the world today, with the highest medical and technological quality and the closest geographical proximity.

Okay, it is not available in Hungary, but at least the Hungarian state subsidises this treatment?

Despite the fact that medico-scientifically what is described in the Nature article is fully valid, according to the National Health Insurance Fund Management (NEAK) procedures, as it is an experimental clinic, this treatment is currently not eligible for funding.

Treatment schedule

Official registration took place on 4 October 2024.

What comes next?

1. delivery of the histology sample and fresh blood sample to the clinic.

2. The clinic checks the samples it receives and, using their DNA stock and the genetic database held by the institute, the laboratory starts to prepare the so-called peptide chain that will be the basis for the subsequent vaccination, after a payment of €20,000. This will take 3-4 weeks.

3. Once the peptide chain is in place, the production of the serum will start after a payment of 60,000 euros. This takes 2.5-3.5 months.

4.

5. Return to Hungary.

6. 10 trips to Germany every 6 weeks for clinical treatment with booster vaccinations and the start of the immunomonitoring, during which the immune response is tested and optimised by the doctors. The total duration of treatment is therefore 15-16 months.

I will also receive conventional oncological treatment (chemotherapy + radiotherapy) before and alongside the start of immunotherapy in Germany. I made my first visit to the oncology institute on 1 October 2024 and my treatment will start on 14 October.

All this from the inside

This summary has not discussed the mental, emotional aspects of the disease, although reading this story most people will probably ask the difficult, unwanted question; what would I think, what would I do in this situation? The operation and hospitalisation alone have been incredible experiences, but the medical diagnosis on 24 September led to an unprecedented agony. It's a very fresh memory, it's hard to put into words what happened to me, inside me, in that situation. The faithful, religious reader will understand when I say Coram Deo, to stand before God. Besides, I could bring a poem by Sándor Weöres, which, tailored to my spiritual nature, conveys much of this moment. https://deske.hu/iras/html-2008/weores-elet-vegen.htm

To repeat the last line of the poem, I cannot put it any other way: this struggle has given me an awakening, an irrefutable rebirth, which the love radiating from people, from my loved ones, from my friends and from the upheavals that are happening, strengthens and nourishes me day by day. I think that this mental strength, this belief in healing, in the future, is key in the fight against cancer. Especially when it is a labyrinthine, multi-step process like immunotherapy.

On that Tuesday night into Wednesday, after the utter devastation, I was given the strength to fight and to live life to the full, however much of it I have left. I trust that the fact that I spoke to Zsolt the next day, and that by Saturday I found out I was being received at the German clinic, was feedback on my agony. The interconnectedness of the events described above has filled me with strength and determination. I feel that although the illness has put me on a forced path, I am now on my own path, I have found a cure, a way to live my life that fills me with real hope and a future. I think this is the most important thing, as it will determine my success in raising the money I need.

Summary

- Both my age and my current physical and mental condition make me a real fighter.

- The tumour was removed early and very effectively neurosurgically.

- With oncological treatment started early and a strict diet, the proliferation of cancer cells can be slowed down.

- The clinic has enrolled me in the programme, which will allow me, if I am lucky or if I wish, to receive my first vaccinations up to January 2025 and, with treatment, to continue living this new life, fulfilling the values that this disease has made me realise.

With all this in mind, I am convinced that this project is a life-saver. I am open to any solution to help me find the money to pay for the treatment in Germany, and I thank you in advance if you can support me financially in my fight and give me a way forward.

If you have any questions about the disease or the treatment, I am at your disposal personally!

Email: [email protected]

Mobile: 06 30 577 4019

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How can you donate?

The process of donating is very simple, a 1-minute process, but you can read a detailed guide here:

1) Look for the red "Donate" button, on desktop, laptop at the top of the description on the right sidebar, on mobile pinned to the bottom of the screen. After clicking, you must first select the amount you want to donate, next to the most popular ones you can enter how much you want to donate under other amount. Donations can be sent in euros, we chose this platform because neither your bank nor Revolut will charge you high costs for this, and the treatment is also paid to the clinic in euros, so we don't lose precious forints on the conversion.

2) After entering the amount, you can choose the payment method, if you have Revolut or a similar app, that's probably the best, but we also tested the regular debit card payment and for €5, Erste bank charged €5 to 2014 forints compared to the mid-rate 2007 forints, so the conversion cost is only 7 ft per 5 euros (at the exchange rate of 03/10/2024).

3) Then, in the 'Support 4fund.com team' section, you can choose to support the fundraising platform itself. By default, you can set the amount of support by dragging the slider left and right to 20% (you don't have to support the platform), so you donate this amount to the developer and not to my administration.

4) Then scroll down, enter your email and if you want your name

5) Then finally click on the donate button to start the known card payment process.

Why transfer in euros, it doesn't cost much?

In short: not at all. The campaign is in euros because the amount of the treatment has to be paid to the clinic in euros, and when you pay by credit or debit card, even the bank calculates a fair rate very close to the mid-market rate, so that's how you keep most of your donation. We tested the exchange rate with Erste Bank on 3 October 2024 and when paying €5 by credit card, Erste charged €5 to HUF 2014 compared to the 2007 mid-rate (401.48 HUF), so the conversion cost is only 7 ft per €5 (at the exchange rate on 03.10.2024).

And if you transfer from Revolut or one of the other instruments offered, the amount of the exchange can be even cheaper. And we can transfer the total amount to the clinic in euros, so there is no exchange rate loss that would reduce the value of your donations, which is very important at the current exchange rate of over 400 euros, because by the end of the collection the forint can depreciate by 3-4% against the euro, so the depreciation of the forint will not reduce the value of your donations.