Our Story

In true London bus fashion, we’ll do another update even though
John posted the latest news last week.

My last blog was after our oncologist appointment in
December, which left us feeling rather deflated (see Dec 18 post). I don’t know why, but we haven’t been quite
so anxious in the preceding few days before this appointment. Maybe because John is still feeling well, and
we have accepted that the PSA will have reached a level to warrant a change in
treatment. Who knows? We set off this morning in glorious warm
sunshine, with the temperature showing 17˚C – bizarre for February. The usual checks were carried out by the
trial nurse; blood pressure – normal; weight – 2kg lighter than three months
ago (marvellous result – happy with that); waist measurement – no change. The long questionnaire which is used to
evaluate the trial drugs was completed with truthful, positive responses for
how John is feeling. We went through to
see the oncologist on time. We almost
dread being told what the PSA level is, and as John said last week, we were
expecting it to have risen to around four.
Today’s result: 2.87 – 0.03 LOWER
than 3 months ago. 0.03 is indeed a
very small, and some may say insignificant number, but it IS significant in
that it’s a decrease, which was not expected.
We had to ask for confirmation in case we had mis-heard the result. The consultant seemed suitably impressed too,
and explained that it’s quite unusual to see a lower number at this stage, so
we should indeed be very pleased. We
have to accept that the level will most likely rise in 3 months, but in the
meantime we will revel in the delight that a reduction of 0.03 brings!

In contrast to the last appointment where we felt very
rushed, we were able to ask questions today, such as: when a new treatment is
introduced are we likely to see a drop in the PSA level [there’s no telling
really – if it does bring the level down – hurrah!]; is another round of chemo
possible when the PSA starts to rise more sharply [yes, it won’t be ruled
out].

John will continue on the Metformin trial and have another
blood test in 3 months, and depending on the results may not need to see the
consultant until 3 months after that (ie go to 6 monthly appointments with
monitoring blood tests every 3 months).
Next week he has a 24 hour ECG monitoring to check for a possible
irregular heartbeat, but we’re not getting unduly concerned about that.

So we are pleased to confirm that after a ropey appointment
in December, normal service was resumed today, and we certainly left the McMillan
unit with a spring in our step.

We’ve celebrated by ordering a pink velvet Chesterfield
sofa, and will be partaking in a small G&T on a school night – has to be
done!

Happy days.

Welcome to our regular three monthly update.

We have reached the end of the first two years of the
STAMPEDE trial for prostate cancer. The trial has been running for many years
and has tested several different treatments and combination of drugs. If you
are interested in the detail, it stands for

“Systemic Therapy in Advancing or
Metastatic Prostate Cancer: Evaluation of Drug Efficacy”,

which is a bit of a mouthful. I am on arm K, which is testing whether
the diabetic drug, Metformin helps slow the progress of the disease. Obviously,
I am hoping that it does! So far it seems to be doing pretty well, as I still
feel well and have no real symptoms other than being a little tired. But that
could just be down to getting a bit older. I have already benefitted from the
findings of some of the earlier arms of the trial. It is good to see that as
soon as the researchers show that a particular treatment is better than the
current standard regime, these treatments are offered to current patients fairly
quickly.

As part of reaching the two year milestone I had a fasting
blood test this morning and we are due to see the consultant and research nurse
on Monday for the results. As always this is a tense time as we know that at
some point the current treatment will stop working as well as it did to start
with. It is quite possible I will be given a new hormone drug – Enzalutamide at
this meeting. We have already been told that when the PSA reaches four, that
this will be the time to add an extra medication. Hopefully there won’t be too
many side effects if I am put on this now.

It is possible that the current trial I am on may finish at
the end of these two years, but I expect to find out on Monday. If it does come
to an end there are several other trials that I hope to be eligible for. The
immunotherapy treatments look very promising so I will definitely be putting my
name down for one of them if the opportunity comes up. Fingers crossed.

I have mentioned in previous blogs the realisation that
working part time is fantastic as it gives you the time to do the things you
never seem to get round to when in full time employment. I am now working at
three businesses on a casual basis which provides more than enough work. One of
these is a care home that I originally started with as a casual chef but I am
now acting as catering consultant and trainer as the standards are well below
what you would hope for. Lots of frozen food and packet mixes, which is such a
shame to see. Unfortunately I have now become the most hated person there as
the whole department are having to work harder and take more responsibility. It
will be interesting to see how it ends up.

Apart from work and cancer treatments we continue to have a
very full social life with lots of holidays planned. So far for this year we
have the Maldives in April, Scotland in May and Hawaii in October! I am sure we
will fit a couple of extra short breaks in as well.

We hope you are all well and enjoying life to the full. I will let you
know the results of our appointment next week.

A few photos from some recent trips.
A short break in the Cotswolds to celebrate my birthday.

An excellent vegan meal at Rubino Kitchen near Chelmsford with Ruth & Russell.

Celebrating with Maurice & Gary after they moved into their new home in Dorrington, Shrewsbury.