A beacon of hope

Lately, I have received so many messages and calls from friends asking me on how I am doing and if there are any updates with my disease progression, and only then I realized I have not posted an update on my blog for a while. So my apologies for the late update!

From my post “Fuck Cancer!” you already know that the therapy with my old pink pills that I have started in the summer of 2016 were no longer bearable due to the many bad side effects. I got so frustrated that I had decided to stop the medication as I was tied up to my bed feeling sick and in pain. This was not a life I wanted to live. Also the festive season was coming up, and I was simply looking forward to spend time with the family and eat great food. My amazing doctor understood the situation and immediately agreed to discontinue with the medication and take a break until the New Year. Nevertheless, he also had a ‘plan B’. So let me get straight to the point.

One of the things we have initiated to do was tumor sequencing, which is basically an analysis of genomes and a biochemical laboratory method for the characterization and identification of the DNA or RNA sequences of cancer cells.

It is known that cancer is the result of many genetic errors that can cause healthy cells to degenerate and grow out of control. So with the analysis of my tumor tissue the scientists will be able to identify my DNA/RNA, to copy number and sequence variants, identify mutation status and structural changes. Identifying these genetic errors by means of DNA-sequencing will contribute to a better understanding of the early stages of tumor development and lead the way to more individualized treatments. The hope is to find a specific or personalized medication suitable for my cancer type. In order to do that though, the radiologist had to remove some tumor tissue from my lung, which then could be sent to the clinic in Heidelberg who has the world’s first genome research platform. So on 15 December 2016, I spent one night in hospital for the small lung punctuation. Obviously, things don’t always work out as smoothly as you wish, and upon my return from Italy in the New Year, I was being told that the tumor tissue sent to Heidelberg was not sufficient for the sequencing. This meant I had to go back for another small operation.

In the meantime, two months went by since I stopped my last medication and we decided to do another CT-scan. Simultaneously, the doctors in Stuttgart arranged the next small operation to gain more tumor tissue for Heidelberg. And now guess what…. I got hit by another surprise! The scan showed that the cancer has spread to the liver and here I cite what was written in the diagnostics findings: “multiple new metastases in the liver not larger than 19mm”. At first it really shocked me, as these little fuckers just want to do what they want. But then I read the rest of the report and I have to admit that overall it isn’t too bad. The report states that the bone metastases remained unchanged and stable and no new spots could be identified. The lung metastases grew bigger e.g. from 35mm to 38mm, but no new lung metastases could be seen. Considering that I have been on a 2 months therapy-break, it’s actually not so bad.

Anyway to cut a long story short I went for my small operation on 25 January 2017, where more tumor tissue from the liver was removed and sent to Heidelberg. Thereafter I even had to drive all the way to Heidelberg to sign the papers and confirm that I agree to the tumor sequencing. German bureaucracy can be such a pain in the ass. Now I have to be patient, because the outcome is expected only 8 weeks later.

Instead of waiting for the results and giving my cancer cells more opportunities to grow and spread, my doctor recommended doing a different therapy which is however similar to my previous one.

The medication I am now taking is called Lenvatinib, also a multiple kinase inhibitor that should suppress tumor growth. Lenvatinib is a new generation drug that shall also give less side effects than the other ones I have been taking. On Friday, 27 January 2017 I started with the new medication and so far I have been handling it quite well. Just in the first week I had very strong bone and joint pain, but then my condition stabilized. I am quite happy at the moment on how it is going, as I am now in my 4^th week of therapy and still untroubled with side effects. I do need lots of sleep, and in the evening I am very tired, but I am still able to meet up with friends. Let’s pray and hope this medication works as good as the previous one… just without the side effects. 🙂

Sleeping with my cutie…

Overall I really cannot complain right now except for the very cold winter here in Germany. Everyone is sick and got the flu, so I am trying to avoid public places, as I cannot afford to get sick at all. The new medication and the ongoing tumor sequencing are providing me a beacon of hope and keep me motivated not to give up and until I exhausted all possibilities. That’s it for now and I promise I won’t wait so long to give updates the next time.