Booked in at the Hotel Haematology

Saw the consultant last week and the plan is to move on to the next phase of treatment.

Some good news was that the latest blood results (samples taken towards the end of March) have shown a move downwards again in the “free light chain” level.  In fact they had dropped back to a very similar value to the previous minimum achieved in January.

FLC.April 2013

Here’s the graphic that illustrates that.  I’ve not overdone the statistical analysis this time – there had been comments 😉 – and anyway I think the overall picture is pretty clear.  Generally there has been substantial progress downwards in the “lambda free light chain” level, although note that the bottom of the vertical scale is 1000 – ideally an even lower value would have been reached.

Also, despite the latest step downwards, the consultant wasn’t convinced that another cycle of this style of treatment would necessarily continue the downwards trend.  Moreover, that latest dip downwards had been achieved by upping me to the maximum thalidomide dosage (200mg/day), which I’ve tolerated quite well (though mornings haven’t been that pleasant), the main issue being some mild neuropathy (numbness) in the fingertips of my right hand.  I’ve been fairly blasé about this as it’s not been very bad at all, but all the doctors I’ve spoken to are very wary about it and clearly don’t want to push it too hard. A final consideration is that 8 cycles of Velcade (which I’ve now had) is the normal limit (both for medical and for financial reasons) and although it was conceivable to stretch out to another before moving on, it’s apparently best not to hammer the system too hard before moving towards a stem cell transplant.

So on to the next stage of treatment, which will be a high dose of melphelan and an autologous stem cell transplant.  Melphelan in high dosage is usually a very effective treatment, but also wipes out a lot of ‘good’ blood white cells too.  So much so that you’re left without much of an immune system, and need to stay in a protected (though not quite “boy-in-a-bubble”) environment for a while.  In order to be able to reinstate the required white blood cells, a bunch of my stem cells (the precursors of all blood cells) are gathered in advance, to be given back to me after the melphelan has been administered.  Much of the time (a month?) in hospital is waiting to for the stem cells to return to bone marrow, to start turning into the required blood cells again, and for the blood counts to return to a level where I’m deemed safe to emerge blinking into the sunlight.

Today I started the first step of preparation for this next stage: “priming”.  This involves greatly boosting the stem cell production for a week, ready for the “harvesting” next week.  Incidentally the harvesting is just a kind of blood dialysis (out one arm and back in the other) and doesn’t require any kind of drills and narrow spoons.  The stage today was a sizable dose of cyclophosphamide in order to temporarily halt the stem cell production, so that when subsequently boosted, everything is in synch.  I was given various warnings about the cyclophosphamide, but to be blunt I found today quite pleasant.  After two hours hydration on a saline drip I was hooked up to a bag of the stuff, which went in through a drip over another two hours, over the course of which I, well let it be said, got stoned.  There was a moment, shortly before the pink unicorns danced in(*), where it occurred to me that a chemo ward was probably not the place to get a giggles fit.  It wore off within an hour or so of being let out, but it was fun whilst it lasted.  Then for the rest of the week I’ve got to inject (oh yes, more of that) myself with GCSF, which boosts the stem cell production and causes the stem cells to emerge into the blood stream ready to be harvested.

Harvesting starts on the 22nd April, with a bit of settling down before I check into the Hotel Haematology on 14th May.  More on that soon.  I’ve asked for one of the executive suites with a sea view, a jacuzzi and an unlimited pass to the spa centre.  I may be disappointed.

(*) This may or may not have happened.

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3 responses to “Booked in at the Hotel Haematology”

  1. Terri J says :

    You look young so you will do well. My daughter (33)only needed 1 day to harvest enough of her stem cells for 2 transplants. She had her transplant in August & is in complete remission . She was in the hospital for 17 days. After 3 months she went back to work fulltime. Although she is on maintenance therapy(5mg Revilmid daily) & she is taking other meds. Her life seems to have returned to what it was before diagnoses with the exception of seeing doctors frequenly. Good luck in your journey.

    • whatnickdidnext says :

      Thanks for your comments and your good wishes. Yes, I am fairly young (39) – or at least I think so! I’m booked to go in for transplant next week, so am just making the final preparations. I hope your daughter continues to do well and is enjoying life. Best wishes.

  2. James smith says :

    good info Nick. fingers crossed that Hotel Haematology is up to scratch. James

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