Just as we were anticipating some time at home and a short breather before the next stages of treatment, two complications threaten to change the plan. The first is the unexplained appearance of imbalances in Isita’s blood. It is both too acidic and she also had too much bilirubin, i.e. jaundice, although that has come right down today. The second more disturbing complication is the possibility that one part of the primary tumour may have increased in size.
There is no connection between the two upsets. However, they noticed the possible change in the main tumour during an ultrasound checking for liver problems that could have caused the jaundice. The liver and gall bladder are fine, but incidentally the scan showed that part of the tumour may have grown. The difference is within the margin of error comparing the ultrasound and the CT image taken in November. “Apples an pears” as the senior nurse practitioner noted. We hope to get a better picture after an MRI tomorrow or the next day.
Next week they will also carry out an MIBG scan. The radioactive dye will show if the primary tumour is active. In November, there was just a small uptake indicating treated disease. Back then there were no metastases. We must hope for a similar result. Meanwhile we try to remain calm.
There is still a scenario under which we bring Isita home next Monday. Our TPN training is temporarily suspended but we can get signed off if we start again tomorrow. This will happen once the imbalances are under control. We have temporarily stopped the Nourish feed and some medications, and will only reintroduce them gradually.
What is most important is that the scans should be clear. If so, we will move ahead with the first stage of immunotherapy next week. This starts with a fortnight of retinoic acid – a supplement – before the actual therapy begins: 10 days in hospital, two weeks out, 10 in, and then three more cycles maybe as an outpatient if she can tolerate it.
If the scans show the primary tumour is active and growing, Isita will need more chemotherapy before we go on. The worst case scenario is that they find metastases. That would indicate the high dose wasn’t high enough. As our consultant Giuseppe told us this afternoon, “if this disease kills Isita, it is metastases not the primary tumour that will do it. We can deal with the primary tumour.”
So this scare over the tumour growing, even if it is justified, does not, on its own lead to the worst case. Contary to what one imagines, the primary tumour is not the engine of metastatic disease. If other lumps start growing they will come from individual cells already lodged around her body. These are best dealt with by immunotherapy, which is why this next stage is so vital.
Putting the most positive spin on a fairly grisly afternoon, what appears to have been a temporary episode of jaundice has pushed the doctors to carry out tests which would have anyway been needed very soon. If the results are good, Isita will soon be embarking on some of the most sophisticated cancer treatment there is, which we are extremely, extremely lucky to have access to. If they are not good, we have been alerted to a potential problem at an early stage.
I wish I could go to sleep and wake up next week when all this will be clear. Pray for her dear friends.