Bowel cancer treatment and side effects

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Rachel56

1st IV yesterday any guidance please

Hi had first infusion yesterday. I am stage 3 and on 3 months Oxi/cap regime. Most potent side effect at the moment is neuropathy in my hands which came on once I stepped out of the hospital I think caused by strong breeze. At home cannot touch kitchen tops, door knobs, even book cover feels extra cold. I know this is a common side effect but really looking for advice on any good gloves to get. My bright pink purple ones with fur on cuffs not really a long term solution!

Other side effects are slightly shaky hands and when I bite into something pain in my jaw which goes away with second bite. Again I don’t think that unusual but any experience welcome.

Neuropathy is so weird!

Rachelx

Mark McC

Hi @Rachel56

I remember the shock of the suddenness of the neuropathy after my first round. Sadly it is one of the side effects everyone seems to get. Keep notes on how good / bad it is as my oncologist was always V interested as extreme case can leave longer term nerve damage, so be honest with them.

I started my infusions in Nov 2020 , so it was a bit chilly which didn’t help. My wife bought me thermal gloves, thick socks, and thermal leggings and top. I also had a beans and scarf - ended up looking like where’s Wally. Also used plastic handled cutlery and thermal cups. Can really sympathise with the reaction from touching various surfaces, made me feel pretty useless TBH.

Good luck and stay strong.

Gula

Hello @Rachel56. Sorry you had bad neuropathy after 1st IV. I am the same age as you and had Stage3. Finished my chemo treatment in Feb 2020. My husband ordered me white cotton gloves from Amazon, and wearing gloves at home really helps. It is really very unpleasant cold sensation when touching things. But it will go in a week time. I didn’t even dare to open the fridge to get milk lol. Hot water bottle is good to warm your hands and feet. I had 6 months treatment. Things will get better!!! Take care :x::x::x:

Rachel56

@Mark McC @Gula. Thankyou. Yes going to get some gloves of some description. Sitting in bed with hot tea no issue but touching dish cloth, any metal, cold work service etc has an immediate reaction. Managed to hold my book cover this morning though without gloves so hoping it will ease. I was so surprised the breeze brought it on and could feel it in lips and cheeks as well (but that has subsided). I feel like an alien. Thankyou for your swift responses so reassuring. :x::x::x::x:

Lucy118

Hi @Rachel56, you’ve had some good advice already and I’d agree cotton gloves are a good idea. The first bite thing is horrible too. I seem to recall that I tried to bite slowly which seemed to help. Do keep your team informed as they may wish to reduce the dose second cycle. Both symptoms usually ease after a few days. Good luck with the rest of your cycles :x::x::x:

Rachel56

@Lucy118 Thankyou. Glad it is not only me with the first bite thing. Yes won’t hide anything from the team. Rxxx

hev

@Rachel56
I had a lot pain in arm around 45 mins after infusion and agree the surprise when touching something cold. I remember going out for walk soon after and the shock of cold on my face and hands
As with advise already given
I found the hot water bottle on arm wrapped in towel was good and eased the discomfort a bit
Too-
I must admit I didn’t have same arm pain on second infusion and was told this can often be down to the area where needle inserted.
You will be given second infusion in other arm so wish you all best- you’re getting there :x:

Rachel56

@hev I had the pain in arm too but gone now. Good call on hot water bottle. I am going to take one with me for 2nd one. Thankyou Rxxx

hev

Yeah one of many side effects but amazing how we all have different

hev

When the oncology nurse rang me to go through list of side effects of chemotherapy treatment
I remember thinking OMG- but although I ended up having few nasty side effects - as I always say we are all different and many people have no effects- it’s a lottery

Dyslexicimp

I havent had this experience (yet..) but I have very cold hands and feet, to the point of them not working well. I use silk inner gloves that you can find in outdoor shops or ski suppliers. Cotton or any natural fabric would help as well :x::x:

wew1745

@Rachel56 I had my chemo in November-January the cold really affected my hands feet and back of my throat. Like you I felt it the minute I left the hospital. I hadn’t realised it would happen so quickly. I wore soft gloves in the house all the time. My daughter works in a wooden mill and she bought me cashmere gloves and socks. They were soft and warm.
My mum bought me thermal leggings and top (top had sparkles through it. Looked fab) which really helped. She also bought me bamboo cutlery as I couldn’t hold anything metal. The symptoms did subside after a week or so each time.
I had ‘first bite’ too. The first thing I tried to eat when I got home from my first infusion was cheese and onion crisps! I never made that mistake again.
I’m left with slight neuropathy in my feet 6 months later - but no cancer. 😀
The hospital had a heat pad that I wrapped around my arm while having the infusion. This helped with the pain.
All the very best with your treatment.