The summer of my pink and white pills

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!

I have to admit that I was quite upset about this news, as I had the feeling the chemo did do something positive, but I had to accept the fact that continuing would be too risky. A new therapy was suggested – oral medication to be taken daily to which I have immediately agreed on doing. However, we (my oncologist and I) wanted to recheck with others if there were any alternative treatments that could be done: either before starting with these new tablets or simultaneously. One option was to determine if we could radiate again the larger metastases. The answer was yes it could be done, but at this point it wouldn’t make much sense and rather wait to see if these metastases stabilize on their own.

The other option was hyperthermia therapy where your body tissue is heated up to 42 degrees Celsius to damage or kill cancer cells. It is a new and alternative way to treat cancer and as of recently has shown good results, when this is combined with chemotherapy, it increases its effects. Hence, I contacted a clinic in Munich who then politely declined my request for the following reason: currently they only use hyperthermia for soft tissue sarcomas in combination with chemotherapy, and are not offering this therapy for osteosarcomas.

It seems like they are conducting a study and thus if you as a patient don’t fit in to the requirements, then it’s bad luck for you.

I didn’t give up though and contacted many other centers where hyperthermia was being offered. Even though osteosarcomas have not been well studied yet with hyperthermia treatments, I found two centers (one in Germany and one in Italy) that agreed to take me into their program as an experimental patient. Especially taking into consideration that I would be taking these new tablets soon, it would be an interesting study to see if the tablets would have a greater effect when the cancer cells are also being damaged and weakened through heat.

Before starting with the new therapy, I had to go for one more PET-CT scan. The outcome was no surprise: it was flashing like a Christmas tree. The metastases are still there, unchanged, just as we already knew, but at least no further bad surprises of which I know of.

On Friday, 29 July 2016 I started taking my new medications: Sorafenib and Everolimus. So what are these new drugs I am taking?

Sorafenib is a small kinase inhibitor drug, which shall suppress tumor growth, whereas Everolimus is a mTOR inhibitor that shall block the translation of genes that regulate cancer cells proliferation. It has been two weeks now since I have started taking them, and in the first week I fought against several side effects. I felt extremely tired, had no energy, little appetite, but the worst was the pain in my back, chest and joints. I wasn’t able to walk anymore and use my prosthetic leg. Also my mouth and tongue got very sensitive e.g. tooth paste simply burns like hell and every time I brush my teeth I have tears in my eyes. However, the side effects of these two new drugs could be much worse and as long I have only these symptoms I am happy. I have now finished my second week, and the side effects are getting less day by day. I have just back pain on the left side and the sensitivity of my mouth is still bothersome, but it’s proceeding in a positive way.

So how long does this treatment go on for? Well, the answer is basically “forever” or “as long as my body can handle it”. My health insurance company won’t be happy, as these two drugs (a pack for 30 days) cost approximately EUR 9,300 per month.

These last two months I have spent lots of time researching and contacting other specialists in the US through a friend who put me in touch with them. In the end it all comes to the same treatment options, and thank God for the globalization world we live in today as the doctors are all well connected with each other. But it is also a relief knowing I have not reached the very end of the road, but I still have some more options to look at if these new tablets fail.

Even though my treatment options research has taken a lot of my time, I still enjoyed the summer at home meeting up with several friends. When I checked the weather forecast one Monday evening I was upset to see that it would be raining again on those days when I had no doctors appointment. So I asked my mum if we can drive down to Italy to enjoy the summer heat at our house at Lake Garda, and spontaneously we took my Dad’s cabrio and headed South the next morning. It was a short trip of 5 days only, but it is always nice to catch up with my family there. I also had my first few golf wings in the garden, and chipping actually worked out quite well. Last weekend was clearly a highlight for me, as I participated at the blessing ceremony of my two gorgeous godchildren, the girl twins of my best friend Danilo. So I am now a very proud godmother of Catalina Jasmine and Vanessa Sofie.