At the time of the last update, Joost was waiting for a PET/CT scan, to check whether the cancer had progressed. In reaction to fluids building up around the lungs, his oncologist had drained the cavity around the lung and decided to go back to Sutent alone for his core cancer treatment (from the combination of Sutent + everolimus). In the last three weeks, two key things have happened.

• The PET/CT scan came back - with bad news. Although the tumour sites in the bones seem to have shrunk slightly, there are a number of new tumours outside the bones. Specifically, there are tumours in the lymph system, on the left lung, the liver, and under the collar-bone. Generally, progression into organs - and especially the lymphs - is not good. This progression is also almost certainly the cause for the fluid build-up around the lungs .
• The fluid around the lungs increased. The lungs are surrounded by two membranes (as if they were placed into two plastic bags - the Pleurae), that usually have a thin layer of fluid between them. This allows the lungs to expand and contract during breathing, because they are not directly attached to the rib-cage. In Joost’s case, there was a strong build-up of fluids in this pleural space between these membranes. This happens often in cancer patients, as the tumours ’sweat out’ high protein plasma that gathers in this place. In spite of the fact that 1-2 liter was drained from the pleural space around the left lung, the fluid came back and increased to 2 litres around the right lung and 4 litres around the left lung. This fluid build-up squeezed the lungs so much that both breathing and digesting food became very hard

Decisions going forward

• The pleura-fluids around the lungs create too many breathing and digestive problems. Hence, the pleural space around the left lung is being drained as we speak (a gradual process - which will take a few days), and tonight the space where the fluids resided were coated with talc powder (talkpoeder), so that the two membranes stick together (a procedure called pleurodesis). This way, the fluid cannot build up again. The disadvantage of this is that it will make breathing harder - the left lung will stick to the rib-cage, and it will be harder to breathe in/out deeply. Hence the decision is not to treat the right lung this way for now. At the moment, the fluid quantity in the right pleural space seems stable, and prof. Richel prefers waiting before doing a pleurodese on the right lung as well.
• The new tumour sites will not be operated on / removed separately. Even though some of the new tumours would be accessible to surgery, there is little to be gained from removing individual tumours. On the contrary, surgery causes damage, and may even accellerate tumour growth (as do other removal options like RFA). These tumours will only be operated / removed / radiated if these individual tumours cause specific complaints (pain, breathing problems, etc).
• The Sutent treatment will be complemented by adding Avastin. This drug has targets the same target (blood vessel growth - hindering tumour growth), and may help amplify Sutent’s impact. The hope is that this would stop the progression.
• Joost is taking more pain killers than recently, mainly because of the pain from the drainage-tube inside his body. This will be taken out tomorrow.

At the moment, Joost is in hospital, focusing on regaining lung function. Once his left Pleurodese is complete, and the (small) wound has healed, Avasting will get added (as Avastin interferes with blood vessel building - it also interferes with wound healing). Hopefully, this could happen late next week.
In the mean time, the rest of the treatment approach will stay the same (EPO, Zometa, pain killers, physio therapy, ketogene diet, natural healing, blood transfusions, etc)

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