Chemotherapy pins and needles

Hi

Sorry to hear that . My mum had that infusion for two years . Coming out of the chemo suit we ensured she had a scarf wrapped right round her face . Not letting cold air trigger any reaction . Coming home we made sure she did not touch anything cold and I added some hot water to cold drinks to make sure they were at room temperature. To be honest she headed straight to bed after a light tea and around twelve hours after her infusion I noticed some of the symptoms seemed to settle . Others lasted a bit longer .

We used to take a small flask with tepid ( not hot water !!!) to sip on the way home for the throat issues ,

However the most important thing to do for the next cycle is to tell your team so they can assess your dosage etc . This is information they would want to know . My mum had something added to her infusion and they also slowed it down over six hours to assist with the management of the side effects. So please tell your team. 

You can also phone our helpline 0808 808 0000. If you want to ask for any guidance from them too .

Hope it eases for you soon ,

Court 

Thanks for the reply. 
Are the side effects cumulative?

this second round has floored me xx

i do take the scarf and gloves etc and did mention it to my doctors. Will mention it again next time. Was wondering if any other pain relief helps at all xx

say hi to mum and send hugs for all the treatment she has endured ️

Second round was actually always worse for my mum but strangely enough for her three and four were actually easier . Others do report a more cumulative effect but not for my mum for the middle ones .   First one was a complete none event for her so we were not prepared for the second cycle to be so different. Made us a bit frightened of the third but it was again a surprise as it was easier ! The sixth was again always very difficult. It could just have been her but it did not follow the literature. 
But they adjusted her dose the second year and it really helped !

My mum used to get up to use the toilet through the night and things seemed to have become more manageable at that point .

Hope it picks up for you . You can always phone your chemo unit to run it by them to see what they suggest . It’s been a long time since my mum had treatment so they may have other treatments to help with the side effects .

I will tag in Kareno62 to see if she has any tops too .

Take care ,

Court 

Hi . Not got a lot to add to courts excellent advice. I found windy days to be quite bad and could feel my thighs tingling while out walking. It’s a good idea to mention it to the nurses and notice how long it lasts for. You are always started on the maximum doseage for your weight and height and it’s quite common to have a reduction to reduce any side effects.

Hope you feel a little better today and remember the phone number that you will have been given for the chemo unit is not just for emergencies - you can always ring them for reassurance

Take care

Karen x

Thankyou Karen. 
it’s also making my finger joints really clicks x

Mine used to feel tight but keep an eye on things. I started to get tingly feet and kept quiet as it wasn’t too bad but the nurse stopped the oxaliplatin when she saw them and they did get a bit worse even after stopping. It’s nearly 4 years since my chemo finished and my feet still feel like they’re sunburnt - hot and tight. Luckily I’m tall and can sleep with them stuck out of the bed but it’s frustrating so don’t be afraid to speak up x

Thanks that’s such good advice xxxx

Hi Juzz,

was actually wondering how you got on beginning round 2?

You are describing my symptoms too! & all

i can say is HEAT HEAT HEAT...

Only today am I able to even sit in a sunny doorway! (& still not even go outside)

the sensation has been very strong! Like a cactus on my face! & the twitching has really worsened! It’s like if you make a face & your face just STAYS in a stuck position! Very weird! Kept massaging my cheeks down & looked like a frightened rabbit the other day!

(The scariest bit was on day 1 when I really couldn’t breathe properly, so going to have to mention this to the doctor before round 3 as it actually have given me the ‘fear’ now)

A hot flask heading to bed at night time & hot drinks all day long... Don’t let any cool air blow on you at all or try & touch anything cool.. (Even the inside of our door handles was affecting me)

It has calmed down a bit now (as I’m technically on day 8) so crossing EVERYTHING it goes on the improve for you too!

Suzy 

Hi Court,

Your reply about your Mum’s reaction is giving me some hope for the next rounds, (that they might not be as hard)

Thank you!
Suzy

1. Hi Suzy. 
   I went for round two infusion yesterday and I must say yesterday was a tough day. 
   the fatigue hit me immediately this time. 
   the tingling is so much stronger this time. The whole of my face and last night I had a spasm in my throat and I could talk properly for a while, which my son found amusing at the sound of my voice
2. I’ve also found my finger knuckles are quite stiff too. 
   I’m really hoping it all dies down a bit over the coming days. 
3. how are you doing?
4. I have no idea what I’ve done to put this into numerical paragraphs but it looks really important