The questions that arise from this: Where does it come from? Why me? I tried to live a healthy life, I didn't drink, I didn't smoke and I didn't eat fast food. This type of cancer is very rare - it occurs at a rate of 1-2 cases per 100,000 people and usually affects people over 60, and I was only 39 when I was diagnosed. Bile duct carcinoma (Latin: cholangiocarcinoma) is a primary malignant tumour of epithelial origin originating from the mucosa of the bile ducts. Unfortunately, most patients are already in an advanced stage of the disease at the time of diagnosis. This means that such a disease can no longer be treated surgically. So far, there are no scientifically recognised therapies that can help patients.
We began a feverish search for treatment. Family and friends suggested several doctors and the jaundice progressed, draining my strength and destroying my body. I chose a surgeon in Krakow who gave me hope that the tumour might be removed, but before that, the bile ducts urgently need to be cleared to get rid of the jaundice.
So I ended up in the university hospital in Krakow, where I got pancreatitis after decongestion of the larger lobe of the liver and returned home exhausted after 10 days - just in time for my eldest child's First Communion celebration. I spent the next six weeks treating my pancreas and lowering my bilirubin levels to make the surgery possible. Self-esteem was so good some days that I forgot what danger was growing on my liver.
On 19.06.2022, my wife and I went to Krakow, hoping that our nightmare would finally come to an end. I was admitted to the ward and the next morning the operation took place, which lasted 6 hours... When I woke up, the pain was immense and none of the doctors would say anything about its course...
The surgeon came in and said the operation had failed, the cancer had occupied the bile ducts and infiltrated the entire right lobe of the liver, which is 70% of the whole organ. If you cut it out completely, it can lead to death. Again, great stress, bad thoughts, many tears and suffering.
After the operation, there were numerous complications that extended the hospital stay from the planned 7 days to almost a month, and half of the wound was open during this time, causing additional pain. It was not sutured until the day of discharge. Initially, there were no suggestions for further treatment, as a tumour of this type, size and location is resistant to all kinds of chemotherapy, thermoablation, radiation, etc. After consultations between my attending physician and doctors in Warsaw, it was suggested that I be transferred to a hospital in the capital to qualify for a transplant – hope was rekindled.
A big city, the capital of Poland, the best transplant doctors, ideas of a normal life - there was nothing we had to wait for. We went there immediately after receiving a recommendation from Krakow. The hospital in Warsaw was very different from the one in Krakow, as if we had travelled back 30 years in time. The sight and smell on entering was frightening, a moment of hesitation - go in? We were promised help, so we go on. Admission to the ward and waiting… After reviewing the May 2022 records, the attending physician concluded that there was no chance of a transplant and that the surgery itself was unnecessary and very risky because the left smaller lobe of the liver was also affected by a tumour. He repeated the CT scans to compare the images and confirm his assumptions about the lack of treatment options.
I was on my own for the third time. The time I lost without my children, without my wife, without contact with loved ones (I was in treatment from April to August) is irretrievable. I spent many days and hours on the road, driving several thousand kilometres to hospitals and finally returning to the starting point of the journey to get a few more results, a lot of pain and complications of the surgery that I still struggle with today.
A further search on the internet led me to foreign clinics and methods of immunotherapy, i.e. strengthening the immune system to fight cancer.
Unfortunately, this is where the real costs start, which our savings and L4 benefits from the Social Security Office cannot cover. Foreign clinics cost hundreds of thousands of zlotys, which is completely beyond our budget.
At the moment, each day of my therapy costs between 500 and 800 PLN...
Therefore, we ask everyone who can help us to raise funds for further treatment. I want to be able to raise my children to be good people, give them weddings and be there for them when they become parents themselves. I want to be there with a benevolent word to help them cope on their own as adults in this difficult world.
I chose immunotherapies because microorganisms (bacteria, fungi, marine organisms and higher plants) are an important source of new cancer drugs. About 30 % of the cancer drugs currently in use are of natural origin. It is used in consultation with a doctor for the next three months. The therapy is completed with a CT scan, which provides information on whether the tumour is shrinking. The result will decide what to do next.
Preparations that strengthen the immune system's reaction in the first week cost several thousand zloty. The therapies were suggested by a doctor who had noticed their effectiveness in his patients. He also mentioned the Nano Knife method, which makes it possible to destroy tumour cells non-invasively. To do this, it is necessary to reduce the size of the tumour using the methods mentioned above. Unfortunately, Nano Knife treatments are not reimbursed by the National Health Fund in Poland. As of 08.08.2022, the cost of Nano Knife treatment is 56500 PLN.
SEE: Nano Knife: electric nano knife for cancer treatment https://www.zwrotnikraka.pl/nanoknife-nano-noz-bydgoszcz/
If there is improvement, the immunotherapy will be continued. However, if I were to recalculate and still had time, I would like to try the new drug Pemazyre (pemigatinib). Unfortunately, a fortnightly dose of 14 tablets costs £12,000 and the therapy should last several months. https://alivia.org.pl/wiedza-o-raku/nadzieja-dla-chorych-z-zaawansowanym-rakiem-drog-zolciowych/
Thank you for your time and help.
Payment details:
Rafał Dziuk
Account CitiBank PLN:
11 1030 0019 0109 8518 0578 1515
Title: darowizna (Payment purpose: Donation)
EURO: 06 1030 0019 0109 7848 1589 3514
USD: 48 1030 0019 0108 4048 1045 9081
BIC/SWIFT: CITIPLPX
Link to zrzutka.pl https://zrzutka.pl/mu7x3n
If any of you are struggling with similar issues and feel lost and let down, please contact me - I would be happy to share with you anything I have experienced myself so far.
My email address: rafaldziuk82@gmail.com
Once I have won my battle, this website will be transformed into a guide to help find the right path faster, find the right doctors and bring all the helpful contacts together in one place.
Thank you very much!