New Chemotherapy and Ion Beam Irradiation

Before I could start with irradiation on the pelvic bone we decided to conduct two cycles of chemo with two new cytotoxic agents: Etoposide and Ifosfamide.

Basically, this is a new protocol we were about to experiment with which is designed for reoccurring sarcomas. My doctors had come to the conclusion that the previous protocol most likely prevented developing new metastasis, but didn’t work for the existing ones. For that reason, we decided to change my chemo type.

On 3 June 2015 I went back into hospital to start my first cycle.   

So what do my 4 days of chemo look like?

The days started with liquid transfusions before they gave me the actual chemo. Usually by noon I would have received Ifosfamide running for 3 hours, then followed by Etoposide for 1 hour. I was then receiving these two agents for 4 days, and was allowed to go home on the 5^th day.

The side effects of these two agents are similar to the previous chemo including nausea, vomiting and hair loss. If you think I was bald before, you have no idea how I looked after starting with this chemo. My head was smooth like a baby’s bum! But on a serious note, there are additional common side effects of Ifosfamide, which are brain dysfunction and hallucinations. The reaction can vary from person to person, but in my case it affected mainly my hand writing for a few days. Once however, I did experience hallucination at home a few days after my chemo. I woke up in the middle of the night and I saw American soldiers standing around my bed protecting me. I have to however mention that the previous evening I watched one of the “Expendables” movies…

These short-term psychosis / hallucinations should not be underestimated, as it in the past people have actually jumped out of windows and caused harmed themselves. For that reason, relatives or friends at home should always keep an eye on someone who has received this sort of agent.

A week later, I got 41 degrees of fever due to a neutropenia, a deficit in the number of white blood cells, which is quite normal after chemos. This time they dropped to my record lowest: 100. (Note: somewhere between 1800 and 8000 is the norm). So I had to spend another week in hospital involuntarily to treat my infection with antibiotics.

During this hospital stay I met the most amazing and inspiring lady with whom I had the honor to share my room with a few times. She was 87 years old, quite hip and using an i-Pad to communicate with her children and grandchildren. We immediately had a connection between one other and I truly adored her. It was like a granddaughter / grandmother relationship and we had the most entertaining talks. I was telling her about my travels, the places I have visited and she was telling me about her stories during the Second World War and their escape.

My cousin Matteo

After finishing my second cycle of chemo and a few days before heading to Heidelberg for my irradiation, I had my cousin Matteo (who was in Asia for 1 year), my uncle and my grandmother from Italy visiting for a few days. I really started to appreciate every moment I was able to spend with my close friends and family, when I was feeling well. The summer was hot and dry, and I tried to spend every possible moment outside.

End of July I started with my daily irradiations in Heidelberg – 6 times a week – Monday to Saturday with the aim to do 22 irradiations at the pelvic bone.

Now you may wonder why in Heidelberg and not in Stuttgart, my hometown?

This type of ion beam irradiation is only offered in Heidelberg in South Germany.

How does this work? Heavy ions are positively charged atomic nuclei (particles) and of atoms with greater mass (in my case with carbon). This type of irradiation is more effective and precise, and has proven to show results with Osteosarcomas in the previous years. Hence, my hopes for this to work were high and I strongly believed this was the right choice.

Katha pushing me through Heidelberg

My mum and I booked a beautiful apartment on AirBnB and enjoyed the summer in Heidelberg. Besides my 15 min radiation sessions in the afternoon, we explored the town, I had friends visiting, we did a cruise on the river Neckar, we went shopping and I started my first training to walk with my new prosthetic leg.

I have to admit that the month of August was a great month. The weather was great, I had no chemotherapies and hence wasn’t feeling sick, and spending time in Heidelberg was a change of scene. My dear uni friend Katha came for a visit in Heidelberg, and we did some sightseeing together.

Tara’s 24hrs pit-stop

Richard from Australia, who was for work in London, popped over to Stuttgart for a weekend, and also my dearest Tara who came for 24hours from Rome before heading back to Malaysia. I went for a weekend to Switzerland / Lake Constance visiting my other dear friend Becci. Additionally, we had our 10^th anniversary from high school graduation, and we arranged a class reunion. It was indeed a month with many good surprises, and so many good friends of mine surrounded me.

Richard’s visit in Stuttgart

In Meersburg / Lake Constance with Becci

My last two chemos cycles with Etoposide and Ifosfamide were planned for September, and I was so looking forward to the end of it. My hair slowly was growing back in August, and it was frustrating to see my hair fall off again.

After one cycle, my doctors and I decided to cancel my last round, due to my blood cells. It was getting to the point that any additional chemotherapy may be more harmful than good.

When officially all my chemos were over, I headed to Italy to Lake Garda to stay at our holiday house and enjoy the company of my dear Italian family and friends. The hard work of chemo was done, and now I had to start praying that the irradiations had helped the metastasis in my pelvis.