Electra & AML: Spring update-medical

(See all posts related to Electra's ongoing treatment)


So, I've committed the archetypal blogging faux-pas: not blogging. It's been well over a month since my last post, despite my plans to post more frequently. Those plans still exist, and I do intend to develop a better rhythm and post more frequently, I've just drifted a little so far. Again.

Part of the reason for this is that Electra has been out of the hospital for most of the last month, so it's been a comparatively quiet time. However, that is a clearly relative term and there has been loads that's gone on, so let me first bring everyone up to speed. This post will mostly be an update, and I'll try to get (back) into a habit of posting more often and thus give some commentary, philosophising, etc. Because there is so much, I'm going to split it into a few different posts. This one is about the medical side of things.

Electra has now been out of the hospital for nearly two months, far-and-away the longest period of time since this whole thing began. On the surface this seems like a good thing, but the underlying reasons are unfortunately somewhat less rosy.

After each cycle of chemo, Electra's bone marrow is tested via biopsy (a very unpleasant procedure for her). This checks to see whether the cancer cells have gone into remission, and check other genetic markers to measure the progress of the treatment. After phase 1 of chemo, these tests came back positive, indicating that the cancer was in remission, which would portend a successful treatment. However, this turned out to be an incomplete picture. While the initial (and quicker) tests showed good progress, there is a subset of tests involving genetic analysis which take longer to come back. When these tests came back (shortly after cycle two) they showed a persistent genetic anomaly on chromosome eight known as trisomy-8.

The genetic abnormality is itself worrying and was identified earlier on in the treatment. The concern is that it might make her less treatable using chemotherapy alone. That it persisted through the first cycle of chemo was proof that this concern had come to pass. The chemo should still eradicate the leukaemia, but the trisomy-8 would still be there, meaning that the cancer would come back in time. Since chemo is traumatic on the body and each time builds up some resistance, it should never be repeated if it's possible to avoid doing so. So that means looking at a more severe course of treatment: full-body radiotherapy and a bone-marrow transplant, coupled with a more-intense dose of chemo (as if the previous rounds weren't bad enough!)

In essence, this is all about the bone-marrow transplant (BMT). The chemo and the radiotherapy are, at least in the case where a BMT is being performed, supporting steps. The bone marrow is the centre of the immune system. Stem cells, T-cells and blood cells are all produced here, and it's for this reason the leukaemia is dangerous: when the body's defence factory is compromised, every other system can fall prey to problems. In a BMT, one's bone marrow is killed off entirely and replaced with a new system. The radiotherapy and chemo destroy every trace of the patient's existing system and stem cell harvested from the donor are injected into the body where they are absorbed by the bone marrow and generate a new system. In some cases, an actual extraction of marrow from the donor may still be necessary, but in many instances, stem cells, filtered from a blood extraction are enough to generate new bone marrow in the recipient. It is this procedure that Electra is now set to go through.

Schedule of Events
The hospital where Electra was being treated (Worcester Royal) does not have the facilities to perform and monitor BMTs, so she has been transferred to Birmingham, who have been monitoring the case since the beginning. She will go into Birmingham Heartlands Hospital on May 6th (Friday). She will then undergo two days of intense chemotherapy and then be transferred to Coventry University Hospital for four days of full-body radiation therapy (in essence, one is put in front of an X-ray which is left on for 30 minutes; this is done twice a day for four days). Then it's back to Birmingham where she will receive the injection of stem cells. The stem cells will have been extracted from her brother (who is an excellent match, thankfully!) over the previous two days, using a special machine which filters blood so that the stem cells are removed and the remaining blood re-inserted into the donor's system.

So, basically, 7th/8th: chemo; 9th-12th: radiation therapy; 13th: BMT.

I'll do a post on the implications of a bone-marrow transplant soon. In short, it's not good. It's necessary, and far preferable to chemo only given her test results, but it will mean a longer and more intensive recovery period, greater restrictions on future activities for a longer period of time, and a raft of risks and side-effects. I don't want to scare anyone who reads this: it is still very much the right choice, and the overall prognosis is pretty good, but the road to recovery is much harder with a BMT than without.

I will post more in the coming days to discuss Electra's living situation (complicated), the implication of a bone-marrow transplant (complicated also) and more. But in the interests of keeping this from becoming a novel, let me just say that the outlook is good but scary. Please keep Electra in your thoughts as much as possible, the next bit may be very scary.