About my treatment
During the three month period following my first CT scan (on February 2016), which showed very clearly the suspected cancer, and up until May 11th, when I went to Turkey for my operation, I have undergone multiple medical investigations. These consisted of two biopsies, at different hospitals, a colonoscopy, three thorax-abdomen-pelvis CT scans, a transvaginal ultrasound, a digestive ultrasound, a Papanicolau test, multiple blood tests, a digital mammography, PET-CT, MRI and many others. I have also seen many doctors, from both private and state hospitals, who have all all tried to help me. During this time I have come to realise that all doctors who work with patients with serious diseases are very special people. Despite their gift they are human beings as well, and sometimes they just can’t do miracles.
Because my disease was discovered at a very late stage, and because I had no symptoms at all, the operation couldn’t be done in my country. I have met doctors who have told me frankly that chemotherapy has no – or very low -success rates with cholangiocarcinoma. After only a few sessions the tumor will not respond chemo anymore.
I went to Turkey more dead than alive. This is where an extraordinary man, Professor Yaman Tokat, a doctor specializing in hepatobiliary surgery, together with his team, saved my life. It was a very difficult operation, involving many critical moments. Our financial efforts were huge; I had to borrow a large amount of money in a very short period of time.
After being hospitalized for four weeks, I returned home during the first week of June. I was feeling very sick; I could not stand up and I had three tubes attached to my body. I had was in extreme and severe pain, against which I had been put on powerful drugs.
Although I had an appointment with Dr Thomas Nesselhut on June 29 for immunotherapy, I did not feel well enought to travel. Therefore I have delayed the start of my treatment to 1st August.
The journey was very long and tiring. Together with my husband, Ervin, we flew to Frankfurt, and from there we rented a car. The alternative to this was a three hour train journey to Goettingen, and then an hour’s bus journey to Duderstadt. It was a lot easier for me to go by car, and in the end it did reduce the cost of the journey. We managed to check in at Hotel Budapest in Duderstadt. This is one of the cheapest hotels in the city and has the great advantage of being very close to the clinic.
At 8 am the next morning I had my appointment with doctor Thomas Nesselhut. I had not slept well that night. Maybe because I was tired, in pain and emotionally overwhelmed. The protocol requires an open discussion with the doctor for around an hour before establishing the treatment. Thise doctor is an amazing person. After less than fifteen minutes of talking with him, my husband and I felt like we had known him all our lives.
He was very calm, kind and extremely confident about what he was telling us. He was simply radiating assurance and trust. With all the precision of a German, he explained everything to me in detail, and made me feel that my fate would bring me exactly where I needed to be.
Immediately after discussion and consultation I underwent leukapheresis. This is a procedure that consists of collecting a large number of cells (the procedure lasts around 3 hours), which are kept frozen until use. This procedure is performed on patients visiting from outside Germany in order to reduce the month’s stay period required in Duderstadt. In the first month you must wait for 8-10 days between the leukapheresis and the first dendritic cell vaccine. From the next month on only 2 days are needed, and the vaccines must be administered in Duderstadt clinic every 4 weeks.
After leukapheresis I had a few days to wait until the vaccine was ready. Dr Nesselhut and I talked about the other treatments available as I had not undertaken any during the two and a half months that had passed since my surgery. I was not feeling well and I was pretty scared. The next three days, on Dr Nesselhut’s recommendation, I underwent three Laser Therapy sessions.
This therapy is extremely painful. At first I was administered an infusion with a photo sensitive substance. Then long needles are inserted into the liver through the skin (in tumors or near them), through which concentrated light is injected. This takes approximately one hour. Dr Thomas Nesselhut also recommended an OPDIVO infusion. This is an antibody that increases the effectiveness of the dendritic cells vaccine. It was administered to me the day before the vaccine. I felt no particular side effects.
The next day I was eventually administered the long-awaited vaccine. The doctor took a syringe out of a box and gave me a subcutaneous injection. Later that evening I began a slight fever. The next day the same thing happened. I took some Paracetamols. In the airport on the way home I had chills and, although I was burning, I was very cold. Despite the fact I was wearing both my and my husband’s jackets, I was shivering. I arrived safely back home, and after four weeks I returned to Germany for the second therapy session. I was still weak and in pain. In the next two days, in addition to the dendritic cell vaccine and the OPDIVO, I underwent a liver detoxification treatment. The reaction to the vaccine was not as strong as the first time. I had no chills nor fever.
After I returned home I started to get severe pains, especially in my back. Following a CT scan the oncologist told me that the cancer had started to invade my vertebrae and my right hip. I immediately thought that after surgery the cancer has spread faster and that I was paying the expensive price of delaying my immunotherapy treatment for a month. Clearly, the bone invasion had begun before the immunotherapy treatment had been started. Back home, between the therapy sessions in Germany, I followed a treatment with zoledronic acid and arginine (infusions for bone strengthening and liver detoxification).
Now, although still in severe pain, I look forward to going back to Germany for my third therapy session. German doctors have told me that immunotherapy starts slowly, but is powerful. This gives me hope that after 3-4 sessions I will start seeing some results. Unfortunately though I will need many more sessions.
Note: For more information on treatment, please click on the following links: