Hello everyone!
I haven't written for a while, been quite busy with scans and stuff...
So I've just done my 4th neo-adjuvant Xelox chemo following CT and MRI and sigmoidoscopy to see how things are going.
The good news is...
the alien is shrinking both inside and outside the bowel!!!!
It's still there and still showing lymph nodes but gone from T4 Nx (so many they couldn't count?!) to T3 N1.
I am also still MRF+ which I've never come across on the boards but I looked it up and it means my mesorectal fascia is involved - which I understand is the outer layer of the fatty tissue surrounding the bowel.
Question 1 - has anyone had any experience of this?
This is my last systemic chemo and my next steps are moving on to the 5 weeks chemo-radio. I'm waiting for a start date but it will probably be after Easter.
Question 2 - advice for chemo-radio?? They told me I have to have a strict no fibre diet (booo) and have to drink lots of water. They also told me I have to have a full bladder for the treatment as it protects my bladder and moves other organs out of the way ??
Question 3 - this time round the side effects of the xelox are much stronger and am suffering with nausea. I've sent Hubby off to the chemist with a list of different anti nausea pills that the hospital gave me to get the mildest one (it's not terrible but it is quite annoying...).Any advice? I have some gin gins which I eat 1/3 at a time as they're quite strong. The annoying thing is as I still have that annoying swallowing thing, I'm not drinking a lot of water (which I usually gulp down happily) water tastes foul and is annoying so I'm just drinking hot water with lemon or chamomile or other herbal teas which are fine...
Ok fantastic people, that's all for now. Here's to retreating aliens and Rocky Balboa super strength!!!!
S xox
Hi Strongsami . What fantastic news from your scans - to go from T4 Nx to T3 N1 is brilliant news - we’ll done you!
Not heard of people having to follow a strict no fibre diet before chemo radio but maybe it’s to make sure the Bowel is as clear as possible? Lots of water is good advice and I also had to have a full bladder before my scans. There was a water machine in the waiting area and I had to drink 3 cups before each scan then lie on my tummy! They were running late one day and I’ve never got dressed so quick afterwards - I was diddling up and down like a child!
The chemo tablets that you have with your radiotherapy are a much lower doseage than when given as part of xelox - I think it just increases the effectiveness of the radiotherapy- so hopefully your symptons will start to subside. I was lucky enough not to really suffer with nausea but remember the cold drinks well - felt like drinking broken glass - I used to add a splash of boiled water to black currant squash to take the edge off.
Hope the nausea starts to subside and keep up the good work superwoman!
Take care
Karen x
Hello Kareno62
Thanks so much for your message and excellent advice!
That's reassuring to know the Cape dosage is lower with the radiotherapy, I'm relieved as my mouth feels like it has some kind of disgusting tasting goo living inside it I have even tried drinking juice and coca cola but everything tastes like dirty water!
Luckily I'm loving my herbal teas, I just have to drink more... they said ideally 2 liters a day.
Laughing about desperate for a pee after your sessions! I can only imagine, plus the thought of having to stay still during!!!
Thanks so much for your lovely message, have a great weekend and I fully intend to continue kicking this alien's butt!!!
Sami xx
I drank cans of ginger beer at room temperature which helped. What about a decent tonic water? That tends to have a sharp taste that might cut through the awfulness.
Good luck
Nicky
Hello Nicky Nosher
thanks for your message! So I was drinking tonic water (I love it!) albeit just sipping the first few days but this time around everything tastes like dirty bath water and it feels like there’s some kind of extra layer of grimness in my mouth. I know it will wear off but it’s so frustrating! I haven’t seen ginger beer here in Italy but there’s one supermarket chain that does a lot of English stuff and they might have it...
thanks again!
S xx
Hi ,
Can’t answer any of your questions but delighted to hear how well you have responded. Brilliant news .
Court
Helpline Number 0808 808 0000
Hi Sami
If you can't get ginger beer I wonder if ginger ale might be just as good I also believe that you can get ginger cordial(e) in Italy
Hope you find something that you can enjoy drinking.
Ian
Hello
Thanks so much for your message. I have no idea as I've not ever seen it here but hoping to go to that supermarket which stocks English stuff on Wednesday and will definitely look out for it. (I found Ocean Spray cranberry juice there a few weeks ago when I had a UTI so I might just get lucky).
The side effects seem a little less intense today, I know they will wear off, I am drinking hot water with lemon at the moment and that's going down a treat.
Thanks again,
Sami xx
Hi @strongsami, sure knows he is not welcome, and is ready to vacate, all the best,. John. XXX.
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