View on Cancer

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)

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

Joost has had a long and stable period now with a combined treatment program:

    * high-dose Sutent (Targeted therapy specifically for Renal Cell Cancer / Grawitz),

    * painkillers,

    * regular blood transfusions,

    * a Ketogenic diet,

    * paramedical support (acupuncture, coaching etc)

Based on weekly blood samples, the leading physician (Prof Richel) has suggested to evolve the treatment program by adding an additional drug. His logic for this is

    * Joost’s body seems to be able to cope with the cancer therapy quite well. In spite of high-dose, continuous Sutent treatment, Joost has been able to keep his white and red blood (leukocytes and Hb) count up high enough. Hence, he should be able to also cope with a heavier drug regime

    * At the same time, blood markers like LDH seem to show gradually increasing tumour activity, implying that Sutent alone is not doing enough to stabilize (or reduce) the tumour’s activity. There is no absolute proof of tumour growth, and Joost feels good, but these blood markers are early warning signals that the current therapy success is not good enough.

The decision now is to try adding Certican (everolimus) to the current treatment program.

    * This drug has a mechanism of action (mTor inhibition) that should be synergistic with Sutent. Certican inhibits cell division (celdeling) of the tumout itself, whereas Sutent inhibits growth of the blood vessels that supply the tumour with blood. Logically, the combination of the two should attack the cancer from two angles, and the combined effect should be better than Sutent alone

    * Prof Richel has tried this combination a number of times before, and has generally seen a good side-effect profile (i.e. limited side-effects)

With this decision, we are now moving into new ground for the therapy. Sutent is the best proven therapy for RCC, and research into more powerful treatment such as a combination with Certican is still in very early stages. As such, unlike the initial decision to start with Sutent itself, there is now no statistical evidence that the new therapy works better than Sutent alone. That being said, there is a wide consensus in the medical community that the combination is promising. 

Next week, the new regime will be started in the hospital, with Joost under close supervision for the first few days (just in case the added drug creates unwanted side-effects).

Paul van Arkel