The first good news in 2 years!

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).

Yesterday, I finally got the scan results and for the very first time in 2 years we can say that the cancer is responding to the treatment. The scan shows that several metastases in my lungs shrunk in size and there was no further spreading to other body parts or organs. It is more difficult to evaluate the bone metastases, but at least they didn’t grow bigger. Even the one metastasis in my vertebrae seems to be “smaller” (or let’s say less aggressive), as it shows cicatrizations, which is a sign of dead bone tissue.

After 4 different chemotherapy protocols have failed, finally we found a treatment that seems to work for me.

And fair enough my mother asked our doctor why this treatment that seems to help was not tried before? Well, in fact this sort of treatment with Everolimus and Sorafenib is unlicensed for Osteosarcomas, which means no health insurance would pay for these medications. However, when all “licensed” and authorized treatments, such as the various chemotherapy treatments I have done, have failed, only then the insurance would pay for experimental treatments.

Now you got to consider this: 80% of all osteosarcoma patients have good responding to the normal chemotherapy (various compositions with Cisplatin, Adriamycin, Methotrexate, Etoposide and Ifosfamide), whereas I belong to the 20% of no response to the chemotherapy treatments.

Now let me get to the new pills treatment I am doing: studies have shown that only 20% of the patients have a good response to the treatment and luckily I am one of those.

So let me do a little recap:

1. Primary bone sarcomas make up less than 0.2% of all cancer cases – I was one of them!
2. Osteosarcomas are typical in adolescence and below the age of 25 years – I was 28 (!) and an exception!
3. 80% of the patients have a good response in chemo treatments – I didn’t!
4. 80% of the patients don’t show a response to the pills treatments – Again I don’t belong to the majority, but in this case luckily to the minority!!!

Bottom line I was always unlucky: I got a very rare type of cancer, where treatments are limited, and none of the treatments have shown a positive development. I am so happy and thrilled that all the side effects of the past months were worth it, and I am proud I never gave up!

The only downside is my weight loss caused by mainly two side effects. My sensitive tongue and gum are restricting my eating habits, so I eat much less than before. And dysentery is causing a lot of dehydration. Within 6 weeks I have lost 7 kg and at this point I only weigh 40.5 kg. Pretty scary! However, besides all that I am feeling ok … just with less energy than before.

Now the objective is to gain weight again and I will be meeting with a nutritionist soon to discuss the various options. One possibility is to do intravenous feeding during the night on top of the normal food I eat throughout the day. If I do this for 5-7 days and I get my side effects under control I shall gain weight again.

My biggest motivation is another journey I am planning for October / November, however, to get my doctors approval I need to eat, eat, eat and gain weight!