What next?

Kay got through this week's chemo with only a medium amount of trouble. The dreaded asparaginase caused an allergic reaction again, right at the very last moment. The doctors took great care to ensure that Kay was effectively protected by anti-allergic drugs before the asparaginase was given. Also, 25ml was infused over a period of 4 hours, 4x slower than normal. If any reaction, such as a rash, was noticed the infusion would be paused. In theory this protocol should have prevented an allergic reaction and largely it did. However, at the end of the infusion Kay broke out in a fever of +39C. She was sick, etc, in other words seemingly an allergic reaction. During the course of Wednesday evening her blood pressure dropped to 87/29 and her heart rate rose to 140 - 150. All pretty worrying. Marion says that the doctors were not really sure what was happening. The symptoms of the reaction were not typical and the lateness of the reaction was also strange - effectively it started after the infusion was complete. Kay symptoms stayed this way through Wednesday evening but slowly during the night her pulse & temperature dropped and her blood pressure rose. On Thursday morning her blood pressure was 90/47 and her heart rate was around 120. Still her face was quite puffy. So, the doctors were cautious and, much to both Kay & Marion's frustration, kept her under observation until late in the afternoon when they were allowed to go home.

Now it turns out that there's an interesting adder in the grass with this protocol: the line from the infusion pump into Kay's portal has a volume of about 1.5 - 2ml. Before the start of the procedure this line is filled with saline. At the start of the procedure 2ml asparaginese is rapidly pumped into the line, ie 2ml in 30secs or so, to fill the line. Then the infusion is started at a rate of 6ml per hour. After something less than four hours, Marion said that the pump alarm went off indicating that the infusion was complete. However Marion worked out that given the time that the pump had run only 23.5ml had been run in. She discussed this with the nurse who pointed out that there was still about 1.5ml in the line. The nurse then proceeded to flush the contents of the line, meaning that Kay got the last 1.5ml in about 30 secs, the time it took to flush the line. And this is when her reaction started. Seems pretty obvious, doesn't it? So then the question is why the line was flushed in this way?

Anyway, Kay is back home and in good form. In spite of being tired and having no appetite she insisted on going to school yesterday morning. The child amazes me, truly. How she can go from low BP, high temp & pulse to school in 36 hours is incredible. If determination was a treatment, Kay would have cured herself by now.

So the question arises: what next? Kay has reached the end of the second phase of the ALR 10 protocol and, before our meeting with the specialist last Wednesday, we had no idea what would happen next. But the meeting all was revealed...

On Monday Kay will have another bone marrow sample taken for another MRD. This MRD will be done very quickly, within a few days and will determine the immediate course of action. If the MRD is below 10^-3 (ten to the minus three) then she will be put on maintenance chemo until her bone marrow transplant. The lower the MRD the more time there is to find a suitable donor. However, we have been given to understand that there is to be no unnecessary delay, even with a low MRD the BMT will follow as soon as possible.

If her MRD is higher than 10^-3 then she will get an extra cycle of chemo starting a week on Monday, this time a type of chemo that is normally used with AML leukemias. This chemo is of the short-sharp-shock type that will hit Kay's system very hard. It will probably knock her out for up to three weeks and it will IMMEDIATELY be followed by the BMT. In this case the choice of donor will be a compromise, driven by the time available. If no suitable donor is found then either Marion or I will function as donor, ie a cell type match of 5/10. We're told a haploid transplant (ie where the donor has only 1/2 the same chromosomes) is a realistic and manageable option. However, obviously it's not a preferrred option and therefore I assume that there's more risk involved and more intervention required after the BMT. So, in principle, if her MRD is too high then we're now about 4-5 weeks away from the BMT, irrespective of the 3rd party donor search.

So, I can summarize by saying that if Kay's MRD remains too high, from a week on Monday we will be entering a very intense and tough period in her treatment. If it's low enough, then hopefully we will get a few weeks of relative calm and rest before a BMT, with a better chance of having a more highly compatible donor.

I really hope that it's the second alternative: both Marion & I could do with a break. I'd like to package Marion up and send her down to France for a long weekend so that she can spend a few days sleeping in the sun, recharging her batteries.