Reminder of the last update (Mid Nov)

* At the time, Joost had shown a long period of stability (1) No additional tumor sites / growth since the initial diagnosis (2) good / slightly improving general condition (energy, pain-free etc)

* However, his blood markers were showing signs of gradually deteriorating, indicating that the cancer was developing underneath the surface

* Therefore, the conclusion was to add an additional cancer drug to the regime (everolimus) to attack the cancer from two angles (cell division and tumour blood supply)

* Therefore, at the time of the last update, the therapy was:

1. High-dose Sutent (Targeted therapy specifically for Renal Cell Cancer / Grawitz),

2. High-dose Everolimus

3. painkillers,

4. regular blood transfusions,

5. a Ketogenic diet,

6. paramedical support (acupuncture, coaching etc)

In the mean time

* Joost has reduced painkillers dramatically (paracetamol/codeine and a little valium for muscle relaxation). Compared to the heavy doses of morphine + valium + diclofenac a few months ago, this is very good progress

* The blood-readings have been stable (LDH) or back to ‘normal’ (Alkalische fosfaten)

* The entire family had a variety of colds over Christmas and new year. This is something that happens to all of us, but clearly wasn’t helpful for Joost’s battle with the cancer

* In mid January, Joost developed shortness of breath and the hospital diagnosed a build-up of 1-2 liter of pleura-fluid between the lungs (not in the lungs). This fluid build-up can have a number of causes (could be a sign of the cancer spreading, could be a side effect of the added drug, could be ‘just an infection’). Based on the analysis of a fluid sample (high doses of protein, but no cancer-cells detected), it is either cancer related or a side effect of Everolimus.

* Further testing will be done through a new set of PET/CT or MRI tests, to specifically check that there are no new tumour sites / growth. (the last tests were early December, and showed no progression)

* Based on what we know today, Prof. Richel has now decided to stop with Everolimus, and continue with Sutent alone (just like pre-November). The current thinking is that Everolimus has too many side-effects in this time where Joost’s immune system needs to focus on winter flu/colds in addition to the cancer.

* Additionally, EPO was added to the treatment regime a few weeks ago (best known as ‘doping’ for cyclists in the Tour de France). EPO helps stimulate the body to create red blood cells (which transport oxygen to the muscles). The hope is that EPO could give Joost more energy, and reduce dependency on bi-weekly blood transfusions. Up to now, the EPO has had little effect, but Prof. Richel proposed to continue it, and possibly increase the dose.

Next update in a few weeks when the results of the new PET-scans are available.

Paul

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