Circular Letter – May 2024 | Therapy started

«He is the Rock, His work is perfect; For all His ways are justice, A God of truth and without injustice; Righteous and upright is He.»

Maybe some of you are wondering whether I’m feeling pretty bad because you haven’t heard from me since February 20. Back then – after a long “illness-free” break – I had to tell you that the illness had made itself felt again. Today I would like to tell you what happened next and how I am doing now.

Dear family and friends,

First things first: I am now doing quite well under the new therapy; I am very grateful for that!

But first things first: In February, the doctors discussed with me ending the “old” therapy in line with their recommendation; it was implemented at the end of February. This was followed by examinations to compare the current status with the images and findings made 3 years ago after the first diagnosis. The most important result: there is no disease-related deterioration in the bone structure, and apart from age-related changes, there is nothing else to worry about.

On April 2, the new therapy began, a combination of a proven drug with a more modern one (a so-called monoclonal antibody). I spent the first day as an inpatient at the clinic and stayed overnight. The nurse in charge came every 30 minutes and took my “vital signs” – so I was “under (friendly!) observation”! Friendly is a good keyword – because I got talking to the person on the day shift, and in the afternoon also to her successor on the late shift. It turned out that both of them are believers and see their job as a vocation. One of them told me that there were other Christians in her team. That was very pleasing and would enrich their collaboration. That is another reason to be thankful. The Lord has his people everywhere!

The first few days went quite well; I could already tell that my body was reacting to the medication. On the 3rd day, my body temperature suddenly rose to almost 39° C during the day, I was cold and had some aching limbs. We immediately registered for emergency treatment (always required from 38° C) in the hospital. The usual procedure started and we spent hours waiting again. In the end, they found nothing. The emergency room doctor then said: “We have a bed for you, so you can stay here until we’re sure it’s okay. But you can also go home. But only on the condition that you come back as soon as your temperature rises again. I think you’ll actually do that!” Of course, the choice was not difficult.

In the following weeks, my temperature constantly fluctuated back and forth between 37.0° and 37.8°. But the emergency never happened again. I now have the impression that my body has become somewhat accustomed to the medication. The side effects are very limited and, above all, I’m grateful that I don’t have any problems with nausea.

A common question at this point is: “How long do you have to do this?” You need to know the following: The doctors refer to me as palliative therapy (as opposed to curative therapy). In the case of curative, my memory comes out of the region shaped by nine years of Latin lessons and spits out curare, i.e. heal in English. The curative therapy aims to cure the disease.

I had to look up the other word first, because I no longer had the Latin action word palliare in mind. It means to conceal, to envelop or to care for and in a broader sense not to leave alone. The palliative therapy aims (in my case compared to the incurable disease of multiple myeloma) to suppress the symptoms and the negative consequences, with the aim of delaying the disease for as long as possible while maintaining the best possible quality of life. I will therefore continue to receive the therapy, but possibly at a reduced dose. The first two months are intensive with one injection per week (I take the second drug as tablets at home). This is followed by 4 months with 14-day intervals, and from the 7th month onwards, one appointment per month is required at the oncology practice. This will probably continue until something changes again, e.g. if this therapy also loses its effect.

And now I can tell you what made us very happy and grateful after 2-3 weeks of therapy: The development of the disease value or – better said – the strong effectiveness of the medication, which became apparent after just one week and continued in the further course in such a way that the oncology doctors themselves were amazed and surprised. We can only say: “Thank you, Lord, that you have obviously answered the many prayers of our friends, family and brothers and sisters in faith!”

I would like to show you this using the following graph, which starts on the far left in April 2021 when the disease value is first determined, after the disease has been unnoticed and unchecked for months or perhaps a year.

As a result of the therapies that then began and the stem cell re-transfusions (in August and December 2021), the value fell significantly over months, and from February 2022 it remained at 0 for 20 months.

Since September 2023, things have unfortunately been going steadily in the wrong direction, but before the value reached dangerous levels again, the new therapy started in April 2024. In the next graph, I have broken down the last 9 months a little, entered the values since the start of therapy – and there was a steep drop! Within the first four weeks, the therapy pushed the value back close to the zero line. We give our Lord the glory for that!

Thank you so much for your prayers; we look forward to hearing from you!

Best regards

PS: I’ll be in touch again shortly about the blog. It will no longer be public in the future; if you want to continue reading it, you will need a personal account, which you can get from me.