Peripheral neuropathy.

Hi Sassy

I also had carboplatin and paclitaxel chemotherapy in 2022. I started to develop neuropathy symptoms after the first cycle. My paclitaxel was reduced for the 2nd and 3rd cycles and then halved for the 4th cycle. My carboplatin was kept the same. 

I was told that where neuropathy symptoms occur it is best to try to prevent any further damage. My consultant explained that the chemo was like a cake- the carboplatin was like the cake and did the hard work and the paclitaxel was like the icing on the cake. The reduction in dose would unlikely effect how effective the treatment was and it was more important to prevent the neuropathy developing and becoming long term. This is how she explained it to me. 

Jane

 Thanks Jane. Was it your consultant who reduced the dose?

It's very hard for me to make conta t with my consultant as she doesn't have a secretary,  and hasn't had for quite a while.  I've made so many phone calls today to get my question answered. My consultant didn't offer me her email address when I  initially asked how I could contact her.... she just said the phones are always manned. I rang a CNS nurse and she put me through to the chemotherapy unit. Not  much help either. I rang the macmillan helpline and found them very empathetic. 

Bottom line is I guess it's the consultant who sanctions any change in dosage. 

Again, thanks for your response. Sometimes we need a hand to hold. 

Take care, Sassy.

Hi Sassy,

it was the consultant who redused my dose.

the nursing staff follow her prescription. I had bloods taken a couple of days prior to the therapy . This is when she discussed it with me. 

the nursing staff told me that this happens all the time. Very rarely do doses stay the same.

this forum helps us to be kind to ourselves. Our minds are whirring all the time.  A wee virtual hand hold and hug is nearby too . If it stills our brain just for a moment, bliss . I know I need them . 
BM

It was always the consultant who reduced the doses. It was done at each review. Between reviews I called the cancer helpline at my hospital that was managed by the CNS team. The CNS team could arrange medication via the doctors if needed. 

Neuropathy is taken seriously and I was asked about it at each review. It was during each review that the consultant discussed reducing it. I would advise keeping a note of any side effects, symptoms you have, including neuropathy in your chemo diary- then when your review comes up before the next chemo you will have it all ready. 

Chemo is tough and hand holding is often needed. We are here when you need us.

Thanks Bellamay. Just wish I could get to speak to my consultant. It's very tricky but I'm being persistent. (probably annoying)

Take care.

Unfortunately I don't get regular reviews between each session.  I shall try the CNS team at my hospital. I have a pre- chemo appointment coming up so I'll discuss then. Problem being my treatment is 2 days later so maybe too late to get the ball rolling. I'm going to have another go with it all tomorrow. 

Hi 

It won’t be too late.  The pre chemo review is to check blood results and to make sure things going ahead with the chemo including the dosage. I had blood test on a Monday, and pre chemo appt with consultant on Tuesday pm, around 3pm. Chemo due to start on Weds at 9am. My consultant said he would reduce my Paclitaxel - due to neuropathy - and spent 15 mins, reversing the prescription, setting up new one, and liaising with chemo ward, for me to go in slightly later on the Weds so they could get reduced prescription sorted.

So if you have pre chemo appt 2 days before treatment you will be fine.

Thanks for responding Waidh.

It's become apparent to me that different trusts have different liaising with patients. 

At my pre chemo I have a blood test with a nurse, blood pressure, weight/height. I don't get to have a conversation with consultant. They ring me before treatment if bloods aren't good enough to go ahead. Just wish it wasn't so difficult to get a consultation about reduction of dosage. Frustrating!

Ah now understand. The doctors still need to sign off the prescription for the chemo, so think you are right in raising at the pre chemo appt.

Good luck

Thanks Waidh. Haven't given up. Just flaking with fatigue now. New day tomorrow.