Meditation, match or no match

Lessons Learned (so far)

• Trust your instinct.

• Be assertive.

• Don't assume that doctors read files. Double check.

• Do your own research. Especially with a rare disease doctors don't know everything.

• Ask for help. Let people help you with the research. My sister is head of research :-).

• Thinks outside the box. Be open for ideas from other people (those with experience).

• Ask for a second or even a third opinion (I had a fourth :-)).

• Get connected with people who are in the same situation.

• Be 100% sure that you understand what the doctors are saying. Record the conversation, sometimes you miss a part of the conversation or are doubting about what have been told.

Search for the best treatment plan

Knowing that the doctors in our country don't have experience with treatment of your disease makes you insecure. Finding out that the doctor who treated you before made huge mistakes make you even more insecure. Not getting better is not an option in your head. You only want to hear that they have a medicine that makes you better. The doctors kept a lot of options open as long as biopsy results and the corresponding genomical research were not known. Between the 2 CT scans and the biopsy results were six long weeks where I couldn't do much else then searching around the globe for a wonder medicine or treatment. Because of Covid-19, traveling outside Europe for treatment won't be an option. We therefore contacted many clinics in Europe but didn't find any additional or better treatment methods then the ones that we have here in The Netherlands. We found some positive research results and recommendations for a chemo treatment called AIM. And some trials with medicines. But the 'sad' fact is there are so few people in the same situation as I am, that proper scientific research cannot be done and nobody knows for sure what will or will not work. After the second scan en the results of biopsy and genomical research both Dutch clinics came with exactly the same treatment plan. To be 100% sure I didn't miss something, I also went to UZ Leuven in Belgium. Treatment plan is ready, now it's waiting for the next CT scan.