Monday 6 August 2012

Chemo out, Antibody in!

It was ten days and nights after the latest infection before I finally got to go home; My blood counts were still pretty low at the time, but given I'd not been on any antibiotics for a couple of days and I still felt fine then I was allowed to go home anyway - I just had to return in a few days for a blood test.  I went home with what seemed like enough drugs to start my own eBay store, but it was mostly just a few months worth of the usual suspects (anti-bacterial, anti-fungal and anti-viral).  I was also given some Filgrastim (G-CSF) injections, in order to boost my immune system; After a day or two I could tell that they were working, as I had some lower back pain and a kind of headache (bizarrely, it is at the back of the head, just above the neck).

After a few days, I went for the blood test, and at the same time got the hickman line flushed and had the connectors changed too.  The blood test results were fine, and showed the Filgrastim (G-CSF) injections had definitely kicked my bone marrow into action, as my neutrophils level was pretty high now (more than double the top-end of the normal range), so I could stop administering those injections.  The results for my recent PET scan were also back now, but unfortunately they were not good, as they showed that the disease was not responding to the IVE chemotherapy, so there was little point in continuing with that treatment.

The results of the PET scan kind of blind-sided me a little, as I wasn't expecting to get them for another few days, and I had also (to some extent) assumed that they would be fine, as the fluid that had gradually built-up around my heart and right lung before I started treatment (presumably as a side effect of the cancer) had either not reappeared after being drained or drained by itself once I started treatment, so I'd taken those as signs that the IVE chemotherapy was working; I'll most likely ask for an explanation when I get chance.

One of the doctors explained that given the IVE chemotherapy wasn't working then a potential alternative is an antibody treatment.  An antibody treatment is quite different to chemotherapy - Both in terms of how it works and the processes involved in using it in the NHS.  Unlike chemotherapy, which just indiscriminately attacks fast dividing cells (some of which are the cancer, but others are not), an antibody treatment is a much more modern/targeted alternative, as it specifically attacks the cancer.  With the antibody treatment being relatively new and costly, it requires special approval before it can be given by the NHS, hence a case has to be put together/forward for why the antibody treatment is being requested for the patient in question.

It seems that an antibody treatment is not always appropriate, as it depends on the patient's medical history etc, but the doctors looking after myself felt that it could (combined with a stem cell transplant from a donor) still offer a potential cure for my condition - The doctor that I spoke to was hesitant to put a number on the percentage cure rate, but did make it clear that it's not good, which is presumably partly why this treatment requires special approval, i.e. there is a balance to find between cost and the potential benefit to the patient.

Should an antibody treatment be approved for myself, which the doctor I spoke to seemed to think was more likely than not, then I will need to have six antibody treatments, followed by a PET scan to see whether they're working, and assuming they are a further few antibody treatments (the exact number to be decided on later), before finally having an allogeneic (from a donor) stem cell transplant.  Therefore, given that each antibody treatment is three weeks apart, and that the allogeneic stem cell transplant involves a few weeks stay in hospital, then the total duration for the treatment (even in the optimistic scenario) is over half a year!

The antibody treatment itself is done as an inpatient, even though it doesn't take very long to administer, as there is a possibility of having a reaction to it (with symptoms similar to an infection), so it typically involves a day or two in hospital to ensure there are no adverse effects.  The antibody treatment is just administered intravenously (via IV), and over exactly how long depends on the patient, as it may be slowed down if going too quickly causes a reaction (there are also medications that can be prescribed to help with this too).

So, until I hear whether the antibody treatment is approved, I just need to go for weekly blood tests, and at the same time get the hickman line flushed and its connectors changed.  I'll no doubt be having a bit of a read-up on antibody treatments too, as the hospital will shortly be providing me with some information.


  1. hope you get treament approved. will be good to not have the chemo. all the best james.

  2. Same here, hope they approve the new treatment :)Thinking of you xx