Clinicians and patients differ in their opinions about
Prednisone. Clinicians seem to view the drug as a last resort, a temporary fix
to be used sparingly for a short duration. As short as possible. We patients,
however, love the stuff. It makes us feel wonderful. We can frolic in the
sunshine, climb hills – slowly, but we make it – talk incessantly and feed
constantly. In short, we feel well and like to stay on the steroid for as long
as we can. Oh there are some negatives;
degrading quad muscles, degrading biceps, minor sleep impairment, facial
puffiness, and some funky liver enzyme readings, but did I mention I sunshine
frolicking? I was allowed Prednisone over the Christmas period. It was
wonderful. It even offers me temporary reprieve from my rigors. Simply wonderful.
My ICE relapse complicated further treatment plans. Actually, it put a complete halt to them. Other options were required. The
easiest was to use a different strain of chemo, but I
am kind of running out of those. I have been exposed to most chemo classes,
therefore the chance that a different agent will actually help me is limited.
The resistant cells will merely grow stronger. I think there is one
chemotherapy class that I have not yet tried. Another option was a targeted
chemotherapy drug called Brentuximab. Hodgkin’s cells express a cell marker
called CD30. It sticks out on the cell like a little flag declaring its
individuality from those surrounding it. Brentuximab contains an antibody
complex that targets CD30. The drug floats around the body searching for any
CD30 flags. When it finds one, the antibody attaches to the cell and pumps it
full of a chemotherapy agent. It is a lock and key approach. Imagine you are
standing in a hotel corridor with a key but no room number. The only way to
find out which room you are in is to try all the locks. Oh look, the key fits
in this lock, this must be your room. But wait, someone else is already in the
room. Well you’d better punch them in the face, Bruce Lee style. That
is pretty much how Brentuximab works.
This drug had been around for a few years now, but it is
usually only used for patients who relapse after their autologous stem cell
transplant. There have been a couple of trials using it on patients
pre-transplant, but they are not sufficient for the New Zealand drug agency,
Pharmac, to automatically fund Brentuximab. Strangely enough, the New York
blogger I mentioned, probably a year ago, was a participant one of those
trials. It is a small Hodgkin’s world. Brentuximab was the drug my consultant
wanted to use so he asked Pharmac to fund it for me. This required a bit of
research on his behalf, a named application followed by a cost benefit
analysis. I don’t know if they attached a personal reference and a photo as
well; it did sound complicated. For my non-New Zealand readers Pharmac is deemed
a bit of baddie. They only make negative headlines over here. Nobody wishes to
be denied treatment for financial reasons, and media outlets, well, they eat
those stories up. In a Christmas pantomime, Pharmac would be booed on entry.
The application was two weeks into another limbo period. One
would think that with all my prior practice in waiting, my
patience would now be pretty good. It is not. Well it is to a certain extent. Tell
me there will be no news for a week and I will be fine for that week. But once
those seven days elapse I start to become restless, distracted, cantankerous.
Initially the wait for Pharmac was to be three days, then seven, then ten. I
did not expect the funding to come through. I expected them to reply “Try more
chemo. If that fails get back to us.” In an odd ironic twist, if they didn’t
respond before a certain date, I was going to require the chemo anyway. One
can’t help but smile at that. But Pharmac responded in time. They responded
with a yes, which leaves me a little confused – do pantomime villains actually
have layers? Our families were ecstatic with the news, but I must confess I
felt indifferent.
The ten day wait for Pharmac was nothing compared to the
wait for the actual drug. There are no stocks in New Zealand. An Australian
company said they could deliver it to us in a week, with it arriving Christmas Eve. I was to attend the day ward the Tuesday after
Christmas ready for my Brentuximab. But it hadn’t arrived. It was “in transit”.
Transit from where, no one knew. They weren’t even sure if it was in transit to
Wellington, or to the Australian company. Just that it was in transit. For the
next two weeks we spent our days waiting for a phone call announcing its
arrival. Eventually we got a call “Ah it has left Australia”. What? It was
only now in Australia? A call a few days later “It is in Auckland. We will try
to get an overnight courier, so come in tomorrow afternoon.” It turns out it
was held up in customs in Auckland as it cost (far) more than the GST import
threshold, and customs would like some tax please. I am not sure how that was
resolved, but I know it infuriated my clinical team. It took three weeks for
the Brentuximab to get to Wellington. Some say it was sent by kayak.
During this waiting period Mike and I binged on the second
season of Fargo. It was a bit fucked up. Not the scene where they bury a guy
alive in molten asphalt, I can handle that, but the thirty year old wife who
has lymphoma and is on experimental drugs. And we know she dies. We know
because Molly’s mother was dead in the first season, and she died of cancer. Ah
but we’ll just let the senseless killing around her, around us, distract us
from battles that need to be fought, fought without killing anyone. That and
Kirsten Dunst’s performance. Which was awesome.
Anyway, after my Penelope inspired patience (and weeping),
and some excitable distractions courtesy of a surprise visit by my Scottish
sister, I was ready for this Brentuximab shit. I was all psyched up, prepared
for all the worst side effects, and it was totally anti-climactic. A little
fuss and excitement was had in the day ward, but physically nothing. Nausea:
nil. Cell counts: completely normal. Hair loss? Nope, more like super hair
growth, which is good because I was looking like a humanoid cylon prototype,
with tubes under my skin and a shiny skull. So there were no side effects.
Maybe I could imagine some fatigue. But that could also be the steroid
withdrawal. And the infusion only lasted thirty minutes. I had it in the day
ward. No overnight stays.
Three weeks of Brentuximab, a week off, then three further
weeks. That was the plan. After the first three weeks I was finally fever free.
My heart rate was a charming 79 and I was starting to feel much better. Granted
I still had prominent lymph nodes in my neck and groin, I was still experiencing
night sweats, and my spleen was causing me grief, but overall I felt nearly
well. My consultant allowed us an anniversary trip, which we’d kind of already
partially booked. The trip took us to the northern Coromandel, completely off
the grid. The plans were for walking, swimming (paddling for Liv), nature and
books. Maybe even some beer. And no contact with the outer world. We were to forget our current worries.
My rigors started on the second day. The lymph nodes burst
through later that evening. You can
ignore, or at least weakly justify, the changes for a couple of days, but once
the rigors become regular and the fevers creep higher, well we knew, we both
knew, what was going on. It was fortunate that we were completely alone, in our
hired bach, sitting on the deck listening to the kiwi and the morepork chat to
each other – the morepork always has the final say – as it gave us a peaceful
setting to contemplate my fairly obvious relapse. I set myself to weeping. I
was glad that we were off the grid. It is difficult to correspond with people
when everything is getting worse and our future is becoming uncertain and bleak.
Since November we have had three weeks, those first three weeks of Brentuximab,
where we have definitively known what was going on. So if you’re wondering how
I am, be rest assured that I am shit. Except, of course, for that one Thursday
when I saw my consultant and I was well. There is not much point in asking how
I am. It is strenuous and exhausting responding to multiple messages.
 |
| Ok, so it wasn't all doom and gloom |
The day before we left my temperature shot up to 40°C. We
made an obligatory call, which went unanswered, to my clinical nurse who is holidaying in the North of
England. I hear it is charming there at this time of year. Really the phone call
was so we could claim that we hadn’t broken all the rules. Only the remoteness,
the untreated drinking water, the unpasteurised cheese… They were not overly
impressed at the day ward when I admitted the 40°C fevers.
I have started Prednisone again. I pretty much begged them
for it. It doesn’t seem as effective this time. There has been no frolicking,
and although the rigors have gone, the fevers still remain. In my gut I had believed Brentuximab would work. But it didn't. It is another limbo
period treatment wise. We don’t know what the next step is. No one does. Emails
are being fired between here and Australia, opinions are being sought, but a
decision is yet to be made. I now know that these limbo periods need to be
covered by steroids because Liv’s body and mind and husband cannot deal with
long frequent rigors. They are debilitating. And, during this current period of high
grade fevers, Wellington decides to throw out a fortnight of scorching weather.
But at least now I am now grateful for the wind.
