The second clear MIBG

A few days ago, Isita’s consultant rang Marta to say that the MIBG radioactive dye test which Isita took several weeks ago had come back clear. We don’t have any more details than that but it is extremely good news. Since they did that test they have also carried out a further bone marrow aspirate and trephines test (a biopsy of marrow and bone from the back to test for cancer cells – no results yet), an MRI and a CT scan (also no results).

For the MIBG they injected a radioactive dye that is absorbed by tumours and so would show up on the full body scan which they carried out the day after. This is a big scan and takes several hours. Isita manages to lie very still – the same for the MRI.

The last time she did this test was at the beginning of the year and only the main tumour had taken up a small amount of dye consistent with treated disease. The most important thing now, as then, is that there has been no return of metastatic disease i.e. new tumours in other parts of her body.

What we were told many months ago is that any new tumours will not be generated by the main tumour – which we hope is dying or dead – but would grow from individual neuroblastoma cells present since before treatment started and so by definition resistant to the most powerful chemotherapy which it is possible to administer against them. The ultimate success of Isita’s treatment is dependent on preventing the return of the disease in this way. The immunotherapy and differentiation therapy treatments that we finished a couple of weeks ago are the best ways of ensuring this, as they destroy the neuroblastoma cells or trigger them to develop normally.

As for the main tumour, we don’t know anything more about it but now that the doctors have completed all the available treatments against possible metastatic disease they are coming back to focus on it. This coming Thursday we are expecting to sit down with the consultant to discuss the results so far and to talk about surgery which could take place in early October, to be followed by radiotherapy. Isita doesn’t yet know about the surgery although she may have some unconscious awareness that something of the sort is coming. She had a strange dream last week – a nightmare which resolved itself – when her body opened and she had to close it up again.

Of course, Marta and I are tense – a little less so since we got the MIBG result – and this won’t go away until we are safely on the other side of the op. Still, aside from suffering a bit of a cold, Isita is in a goldilocks period right now. She is on almost no medication, full of energy, going to school, enjoying the new house in Shepherds Bush, getting on well with her brother (and vice versa), and now out of hospital for the longest continuous period since she was first diagnosed. She is once again more used to being here than there. Long may it continue.

12 thoughts on “The second clear MIBG

  1. 👍👍👍👍👍👍👍 she is getting there isn’t she? What really wonderful news. Hope to hear from yr discussion on Thursday. How amazing that she is back at school!!! Thank you as always for the news. Xxxxx

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