Category: Osteosarcoma (Page 1 of 3)

Saying Goodbye.. !

Again I have broken my promise on keeping you updated more frequently and I sincerely feel very bad about it!!! However, you have got forgive me, as a trip to South Africa for 5 weeks is a damn good reason not to be online.

As I had mentioned in my blog “A beacon of hope” I was on a testing phase with a multiple kinase inhibitor called Lenvatinib and I was waiting for my test result from the tumor sequencing conducted in Heidelberg. Hence, my situation was stable and stagnant at the same time.

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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.

Already 366 days have passed since my huge surprise party on my 30^th birthday last year. And yes, I had an extra day in 2016 to enjoy my 30s as it was a leap year. One precious extra day that means so much more for me. It means 24 hours extra for me to live, or 1,440 minutes, or 86,400 seconds.

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Another year has come to an end and with mixed feelings I look back to 2016. Whilst I noticed many have complained about 2016 being a horrible year and lament the death of famous figures, I look back on 2016 being not such a bad year for me. I have gone through a rollercoaster of emotions with many ups and downs, but nevertheless the ups dominated in 2016.

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This will be a short blog post, so let me get straight to the point: FUCK CANCER!

It’s been two weeks that I am back in Germany after my amazing holiday bubble in South Africa, which means it’s been two weeks of therapy already.

It didn’t take very long (3 days) until I started to feel the first symptoms of side effects. Therapy is the same good old one with Sorafenib and Everolimus.

But this time it just hit me harder than the first time I had started with these pills (in July). My entire body started to ache and I was in so much pain that I really didn’t know anymore what else to do. Additionally, I was getting irritated and frustrated at the same time with heartburn and the acidity in my stomach didn’t allow me to sleep anymore.

My doctor got quite worried seeing me in such pain, as the side effects were worse than before. Hence, we decided to anticipate my CT-scan that was planned for December. Obviously, the outcome was just as we expected: the metastases grew bigger again due to the long “off” period whilst I was on holiday. Even though I knew this was going to happen, I still couldn’t hold back my emotions and frustration. It was one of those moments in which all I could scream was “FUCK CANCER” !!!

Ironically, I had the urge of writing this in the sand whilst in SA and now during those frustrating moments I look at these pictures and videos on the beach when I wrote these two significant words. It makes me feel better.

I am doing a bit better now: the pain is getting less and my stomach issues are slowly under control. I just feel very weak and have little energy, but at least I can enjoy my days at home. That’s it from my side for now and you must all enjoy the preparations of the upcoming festive season!

And don’t forget: FUCK CANCER! 

It has been a while since I have updated my blog, and I apologize to my readers who already asked me several times when I am writing another update. But you will soon understand why I have been so silent in the recent weeks and I am sure you will all understand.

So let’s get started: my one and only objective was to get my weight loss under control, which wasn’t so easy. My doctor prescribed me “Opium drops” to get my dysentery under control and I was lucky that it did its effect. You may think I am a lucky devil that I am getting Opium legally, but the dosage is so minimal that you don’t even feel it and it doesn’t make you high at all. It’s just sufficient to “block” my tummy. Foods wise, I had a very good talk with the nutritionist who was initially against intravenous feeding, as she wanted me to try to at maintaining my current weight at least. I actually managed quite ok by eating more soups enriched with additional calories shakes and slowly ate more than before. But I was still not gaining weight and the side effects did not stabilize enough to let me go on another trip.

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I don’t know where to start but I am really thrilled to share these good news with all of you!

On Monday, 26 September (2016) I had another CT-scan, which was as well the first control scan since I have started with the new pills therapy (with Everolimus and Sorafenib).

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I spontaneously decided to write this blog part, as I have the feeling my recent posts are not exactly showing how I am really doing. Too many questions have come up from friends and family who live far away and do not see me frequently.

So what has really changed for me? Well things have turned a bit differently since I have started with the new pills. Before the new therapy I was pretty independent, I hardly had any back pain and I was able to play a bit of tennis and golf.

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It’s been a while since I have updated my blog, and I would like to apologize to those who keep asking me when the next one would be published. After my holidays in the Maldives, I changed into my research mode, as things didn’t happen as planned.

I mentioned in one of my last blogs “No bad news at last” that the CT-scan wasn’t too bad, and I left for my holidays with the impression that the latest chemo did sort of help. Upon my return however, I was informed that two lung metastases did grow a bit as my scan was analyzed more in detail whilst I was gone. Even my blood platelets count had the tendency of picking up, they still remained quite low, which was a sign that my spinal marrow had gotten highly damaged by the many chemotherapies I had undergone in the past few years. The risk would be too high if my blood cells may not recover at all at some point. Hence no more chemotherapy for me!

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