Bowel cancer treatment and side effects

strongsami

2nd cycle done but now I have heavy cold / flu... grrrrrrr rant time!

Hello my fellow forumites,

Well, after having a week’s delay because of those pesky stomach cramps - which disappeared on Monday - hooray!

I started with a bit of a runny nose on Wednesday but that was my only symptom. Went for my Oxy infusion on Thursday and they were happy with my bloods and vitals so I did it - yay!

Well Thursday night and yesterday symptoms started to get worse and last night I had a temperature of 38.7 so didn’t take my cape last night and took paracetamol - which lowered the temp. Woken up this morning feeling like utter crap, temperature is fluctuating around 38 so decided not to take cape again and am in bed trying to sleep it off. Also just taken paracetamol again.

I’m in Milan and the chemo line is only open during the week office hours, same with my gp. I have a friend who is a doctor specialising in lung oncology and she said not to worry just to take paracetamol for temperature and only go to a&e if I had trouble breathing or if temp didn’t lower with paracetamol. Does this sound right to you guys?

I remember first cycle I felt zonked on the first Saturday so I’m sure that’s contributing...

I’m such a bad patient I just want to get up and be well grrrrrrrr!!!!

Luckily hubby is here and is helping out with little man.

Hope everyone’s doing ok, rubbish time for immune system issues 🙈

#bogoffcold

Adnyl

@strongsami I'm glad you're feeling a bit better this evening.

When I started my chemo I was told that we need to bear in mind that what you'd usually do (paracetamol and rest) can't be done whilst on chemo as it's too dangerous with a compromisd immune system. I hope you continue to improve :x::x:

angepange

Hi @strongsami , I’m sorry to have to say you probably shouldn’t take paracetamol. If your temp is 38 you need to get medical help if on chemo. Paracetamol will mask a nasty potentially dangerous situation. I’m so suprised you weren’t advised about this when you had all your advice about chemo. It would be really good to get a dr to say whether you should not take your cape too. So difficult if you don’t have anyone to ask at weekends. In Uk there is usually an oncology ward to ring out of hours. Hope you get this sorted and feel better soon.:x::x::x:

george1960

Hi there i have been told if my temp goes over 38 with or without paracetamol to ring the acute emergency number provided. As it could be nothing or might just be a symptom better safe than sorry understand not what you want to here.
Take care :x::x::x:

strongsami

Hello all thank you so much for your replies @angepange and @george1960

It’s a bit awkward as I totally understand the logic behind what you’re telling me but my notes from the oncologist clearly say I should take paracetamol - I also spoke to my oncologist on Friday when I was still under 38 but the cold was progressing and I wanted to be clear of what I should do if it raised. She too told me to take paracetamol if it went up...

I guess different countries and hospitals do different things... also maybe because I was already poorly - it’s blatantly the cold.

Anyway the good news is I haven’t taken anything since midday yesterday - almost 24 hours - and temperature is normal still. The worst of the cold seems to have passed too.

The chemo hotline opens at 830 tomorrow morning so will ring them ASAP to get next steps - I think the protocol here is to do a full blood count before taking up the cape again.

Thanks again, I’ll keep you all posted :x::x::x:

greyhound gal

Wishing you an uneventful day @strongsami ! Keep getting better :x::x:

Can I ask a question please? I’m intrigued by your comment about using arnica gel the other day. Is this for bruising or pain in the arm? I’m just about to start Xelox/Capox on Wednesday and part of this is IV, so I’m arming myself (pardon the pun!) with as much information as possible!! :x::x::x:
Love Wendy :x::x:

angepange

Well @strongsami , how weird that different countries should differ so much! Have been hospitalised and put on iv antibiotics when my temperature went up twice during chemo, as I’m sure loads of other have, maybe the nhs would save a lot of money by just going the Italian way and telling us to take a paracetamol !Hope you get better soon and are soon fighting fit. Lots of love.:x::x:

strongsami

Hi Wendy @greyhound gal

So yes, here the chemo nurses tell us to use arnica gel on our infusion arm to help with pain and phlebitis.

I try to do it twice a day. They told me to get the 10% gel.

I had my second infusion on Thursday and my arm is a bit sore - it feels bruised.

Another nurse I saw just for a blood test said the important thing was to stimulate / massage the area in general...

Good luck for your treatment xxx

Quote from @greyhound gal:
Wishing you an uneventful day @strongsami ! Keep getting better

Can I ask a question please? I’m intrigued by your comment about using arnica gel the other day. Is this for bruising or pain in the arm? I’m just about to start Xelox/Capox on Wednesday and part of this is IV, so I’m arming myself (pardon the pun!) with as much information as possible!!
Love Wendy

strongsami
Quote from @angepange:
Well @strongsami , how weird that different countries should differ so much! Have been hospitalised and put on iv antibiotics when my temperature went up twice during chemo, as I’m sure loads of other have, maybe the nhs would save a lot of money by just going the Italian way and telling us to take a paracetamol !Hope you get better soon and are soon fighting fit. Lots of love.

Hi @angepange I know - it’s crazy that there would be such different advice re: paracetamol?? Also because I always thought they were more sensitive here so I’m surprised. I don’t know whether my oncologist’s advice on Friday was also due to the fact that they knew I was already ill with the cold??
One other thing she said is that I should always have antibiotics in the house (strange concept for me!)
I’m glad I don’t have a fever anymore and the cold is definitely on its way out (phew!) but I do feel like I might have low blood pressure... think I’ll put a call into the ambulance service and get some advice.
:x::x::x:

angepange

Take care and keep us posted @strongsami :x::x:

determinedjoan

Good idea to ring ambulance service ; pls keep us posted. Thinking of u & sending love, hugs 🤗 & healing vibes :x:

strongsami

Thanks for all your advice so I called the emergency ambulance number and they assessed over the phone and determined not an emergency . They then put me through to the “guardia medica” which is basically an on call out of hours doctor. He also wasn’t fussed and just told me to rebalance my salts and keep up my fluid intake... I’ve had lunch and it’s time for my nap now so just keep an eye on things.

Tomorrow morning I’ll finally be able to speak to my oncology team / the chemo suite. I think they’ll make me do a full blood count before giving me the ok to take the cape again.

Will keep you posted, thanks for your support :x::x::x:

greyhound gal

Best wishes, keep strong Wendy :x::x:

strongsami

Hello all just wanted to update you.

I managed to get myself into a major panic yesterday about neutropenic sepsis and last night ended up calling an ambulance at 11pm!!! They came and checked my vitals and said I was fine. They said I could go to a&e and wait for a blood test but I’d been classified green light so no urgency. I decided to stay home and sleep! This morning spoke to my oncologist first thing and went to do my blood count. Now I’m waiting on results and hopefully will get the go ahead to start taking cape again 🤞🤞🤞🤞🤞
:x::x::x:

determinedjoan

Oh poor u @strongsami ; really hope u feel better soon & can crack on with Cape as soon as ur Onc gives u green light to do so. W/es can be soooo long & stressful, can’t they ? :x:

strongsami

Thank you @determinedjoan
So the good news is I’m feeling a lot better. The cold is in its way out - hooray!
Yesterday I went to do my blood count and today the oncologist called to say not to take the capecitabine tabs for the remainder of the cycle :( I’m a bit gutted as I wanted to carry on throwing the kitchen sink at the alien :(
I know the Oxy is in doing its job but wanted the double whammy.
Has anyone else had to do this?
I know the focus should be on being healthy for the next round, just feeling a little frustrated.
:x::x:

determinedjoan

Delighted 😁 to hear you’re beginning to feel better.
Doubt if there’s a single patient on this lovely Forum who’s had some sort of chemo & hasn’t had to postpone treatment for a while !
Do understand how frustrated you feel about it, but be kind to yourself- u haven’t been well all w/e so give ur body a chance to recover.
Love 💗 & hugs 🤗 :x:

Spanner

My wife had bloods taken this morning, had a call from the unit about an hour ago, bloods very low they doubt infusion will be possible thursday. Must go to unit early thurs for bloods and then probably a blood transfusion. I guess these things happen and we must trust the experts.

angepange

Yes @strongsami , it happened to me. I had a cycle cancelled due to an infection . I didn’t want to mention Nutopenia before, as you were just told to take the paracetamol, but it is why here in uk you have to seek immediate medical treatment if you get a temperature. I’m not surprised you got in a state. It is life threatening! I really hope the cold is behind you and you can build up and press on with the chemo. Lots of love.:x::x::x:

strongsami

Thank you @determinedjoan - wise words xxx @Spanner you’re quite right, they make their decisions for our best outcome @angepange thanks my dear you’re quite right.
I know I should just use this time to focus on getting better and focusing on being 100% for the next one...
some zen patience exercises in order ;)
Rocky Balboa in fight preparation mode ;) 💪
Thank you everyone
:x::x::x: