Just over a year ago I had just finished
‘salvage’ chemotherapy – “ESHAP” aimed at puttting my relapsed Hodgkin’s Lymphoma into remission. I had a
stem cell harvest which yielded enough stem cells for several transplants (not
that that was required but it felt good anyway!) I then had a CT scan prior to
transplant that should have confirmed remission; and the next step to transplant
and subsequent, hopefully, cure. However, that scan showed that my disease had
grown despite chemo and was therefore now labeled as relapsed AND refractory,
not good.
A consultation following the results gave
me options, none of which at the time seemed to me ‘worth’ the risk and I took
the option of no more treatment. At that point
in view of my decision I was given an estimated life span of six months.
I have to point out that this was actually not a hard decision to make, I knew
in my heart that I would rather have six good months of health and happiness
than several years of feeling crap and debilitated.
Six months, and much fun passed, and I was
still alive and feeling pretty well although I was now aware of the disease having progressed. It was at this
point I decided to try one of the options outlined six months ago, Brentuximab a lymphoma targeted chemo, which at the
time I believed to give me some extra time - average 10 months.
The treatment, Brentuximab, started in
February this year and had pretty much immediate results obvious to me that were then confirmed after 6
cycles by PET scan showing complete remission. This is what I had been
aiming for last year and so I was now in line for a stem cell transplant.
However, because my lymphoma had been
resistant to the first line of 'salvage' chemo my consultant advised referral to a larger
centre who could offer a donor transplant, rather than my own stem cells, that
may offer a greater chance of survival, although also a greater chance
of death due to procedure. Having only just got my head round having any kind
of transplant I was reluctant to have this consultation but my doctor convinced
me that it was for the best in order to make a fully informed decision that I
discuss my situation and options with an expert, ie someone who deals with
donor transplants every day.
So I have now had the consultation with
the expert. To put it simply, a donor transplant does give better stats of
being alive in 5 years. However the price is high, it also carries a
significant risk of long term complications, some are ‘mild’ and some, although much
less likely, quite bad, well really bad. Also it would mean 3 months away from home with a team I
don’t know and who don’t know me. Plus a longer recovery time.
Apparently because the lymphoma was quite
‘late’ in relapsing the first time (nearly 5 years) plus my ‘break’ in treatment (June 2011 to Feb 2012), plus the fact
it was also resistant to the ESHAP this could mean that it will be a real MOFO to cure
and therefore if one were to edge (or
hedge?) one’s bets would be let's blast it with the slightly riskier treatment……..
Dr Expert did concede that most of the
time the advice he would give patients looking at both options would be straight forward but with my case and unusual disease
progression etc he could not say definitely one way or another.
So, to have my own stem cells transplanted ‘locally’ would
mean statistically less chance of survival at 5 years, but also less long term
effects and less recovery time. If I do relapse then I have the chance to have
a donor transplant later, although it wouldn’t be as statistically favourable
as having at first line treatment.
If I go stats alone, this choice may be easier - ie donor is best chance of cure - but I am already lterally living proof that stats aren't everything, or I wouldn't still be here!
So that’s that! Go me! This is the hardest
decision I have ever made! Harder than saying no more! Which btw is also an
option! But with a very low chance of seeing 5 years!
It’s taken me nearly 2 weeks to gather my
thought about this so don’t worry it you can’t formulate an opinion, although
all opinion greatfully appreciated J
xxx
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