Forum Discussion
byo_boy
6 months agoMember
Hi everyone, thought I'd just take a sec to give an update on our
situation - it's always good to hear how people are going, so here we
go!
We're now just over halfway done with
neoadjuvant chemo, having completed all of the AC rounds and 5 out of 12
Paclitaxel rounds. The AC was definitely tougher than the Taxols with
more notable side effects like constipation, heartburn a little nausea
and obviously hair loss, but Rebecca made it through that OK and is now
being treated much less harshly by the Taxols with, so far, no signs of
neuropathy or any damage to nails, skin etc.
We
had an ultrasound last Monday to check on the response to the chemo and
met with our surgical team on Wednesday to discuss the results. I'm
very happy to report that Rebecca's primary tumour has shrunk by more
than half and the lymph node that was cancerous now shows "normal
morphology", i.e., the cancer appears to be gone. This is obviously
great news since it now means a much better chance of full recovery with
a minor lymph node excision, rather than a full axillary dissection and
a lumpectomy instead of a mastectomy, which is where we thought we were
heading before we started treatment. In addition, all of the genetic
panels have come back negative, so everyone is absolutely stoked. We've
now got a surgery date booked in early December and are hoping to have a
nice Christmas with radiation done and dusted by mid-February.
I
can't thank everyone here enough for all the support we've had, both
publicly and privately. We know we're going to get a great outcome and
having good people to lean on has played a big part in our success and
positive mindset so far.
If anyone's interested, there are a couple of things we've done which may or may not have helped including:
1.
Exercise. Exercise. Exercise - We've been doing daily walks and
physio-based training almost every day for the last few months.
Sometimes only a short walk of 2-3KMs, but have regularly done 5-7KM
walks, sometimes only a day or two after treatment. Obviously your
mileage will vary depending on how you're feeling, but I can't emphasise
enough just how much of a difference this has made.
2.
Diet - Healthy eating and LOTS of fluids - water, fresh juices etc, all
go a LONG way to helping the body stay hydrated and able to cope. Lots
of salads, veggies and protein (chicken, fish, lentils etc) have helped -
we've also cut right down on red meat and processed meats like sausages
and bacon 😢 There has been some challenges with loss of taste,
especially during the AC rounds, but we adjusted our meal plans to
accommodate for that by introducing more flavourful meals.
3.
Sleep - Despite the premeds and steroids, our treatment days have been
long, with multiple hour commutes to the hospital, so by the time we get
back it's not hard to fall asleep. We've aimed for a minimum of 6
hours, but try for at least 8 a night and, for the most part, seem to be
managing.
4. Supplements - We've avoided all
supplements (as well as things like caffeine, aka coffee, tea, coke
etc), except for Vitamin D which gets taken every night, along with some
magnesium after a blood test recently showed a bit of a drop there
(subsequent tests have been good, so we'll probably stop those once
they're finished). Pantoprazole has been a life saver for preventing
reflux and heartburn and gets taken almost daily as well, but other than
that, given the good blood results we get every week, the nutrition
seems to be keeping up.
5. Documentation - We
write everything down, from consult notes to treatment timings etc plus a
daily log of vitals like fluid intake, temps, meals, side effects etc.
None of it has really been required, but it's good to see any patterns
emerging before they become an issue. A good example of that was how we
noticed Rebecca's skin was getting more itchy over certain days and that
helped us manage things with applying more regular moisturising etc.
6.
Advocacy - Always speak up in your consults. We've realised that the
Public System, as amazing as it is, is massively under staffed and under
resourced, so we've had to often act as our own best advocates in
asking questions, pushing for scans, discussing side effects etc.
There's been a few times where if we hadn't spoken up the doctors would
have missed something like a blood test number or similar. It doesn't
take much time and if your notes etc are on point you will often be more
organised than your consultant.
7.
Gadgets, pills and potions - We've tried not to go too crazy with random
Internet tips, but some of the things that have worked are definitely
soft toothbrushes, regular mouthwashing with a gentle mouthwash, nail
strengthener, moisturizer and sunscreen plus just general hygiene tips
like weekly bathroom cleans and bedding changes. We've also been using
ice gloves and booties during the Paclitaxels (much to the amusement of
the great staff in Oncology!) - we're not sure if it's doing anything,
but it can't hurt to try and so far, so good!
I
hope that helps someone out there - when we started this journey, our
biggest fear was the unknown and now that we're getting on with it,
hopefully we can be a little beacon of hope for others who might be
struggling as well. We're obviously nowhere near done, and recognise the
road ahead is still going to be pretty arduous, but we know now that a
positive mindset, good moral support and a great medical team can
definitely help carry you a long way.
Hope you all have a great week - I'll definitely be back with another update soon.
Take care ❤️
George