Weekly Paclitaxel

Hi Jocasta, I too have PN which started after my 2 nd of 4 EC. I needed a treatment break of 4 weeks to calm the PN. I then had my first cycle of 12 Paclitaxel and the PN became much worse plus I have a Strep B UTI.on another treatment break hoping to have cycle 2 this Wednesday. I was told that I will need more treatment breaks to prevent serious damage from PN and chemo may have to stop all together. This has really worried me. I’m sorry that you are in this situation already. Do you mind me asking how you feel about it. Were you given any information about the affect of the stoping of treatment on your long term outcome. 
wishing you the very best.

Hi OljvaGA, 

I'm sorry that you are suffering the side effects, but glad that's it's being managed to mitigate the risk. I was told EC didn't cause PN, but that might explain why it's not that much better; I had EC after pacitaxil. I did ask about stopping it early and they said it was  matter of balancing the risks agsinst benefits. I'm still quite badly affected, being disabled from chemotherapy wasn't ever mentioned. I've decided against further tablet form of preventative chemotherapy as they said the PN is likely to be worse in people who are already affected. They said the 10 year disease free survival rate may only increase by a few percent. My hands are very stiff and recently have itchy palms. My feet are tingling permanently and my knees and legs are weak. They consider quality of life vs quantity in their decisions, but they will be making those decisions in your best interests. If you're concerned, ask them to explain how it will affect your prognosis. X

Thanks for responding so quickly . It sounds as if you’ve had a tough time. As I understand it PN is unusual with EC. The nurses asked my consultant to prescribe a dose reduction as soon as I had PN after the second EC but he refused as he did for the following third treatment. I found EC pretty grim. A different consultant gave me a dose reduction and treatment break for my fourth EC which made a difference. I do wonder if I’d had a reduction as soon as the PN started if it would be so bad now. I can’t change any of that of course. My PN in my feet has made my walking difficult and unsteady . I noticed pain from my hands going up my arms last night which is new. I’ve got 3 underlying auto immune conditions not sure if these make a difference to how the PN progresses. After a series of problems I  have asked to change to a different consultant . I am Hoping someone else may be more responsive about the PN. 
I hope you are getting plenty of support and the PN settles down very soon. All the very best

I think what is disappointing is that there doesn't seem to be a standard protocol. I had my pacitaxil reduced to 80 per cent, but I've still been affected. People with auto immune conditions are possibly made worse. So far my arms are not affected but who knows. The oncologist said in most cases it improves with time. I guess it's a case of waiting to find out. I hope you get the best outcome from your management plan. X

Sorry for the late reply. I’m in the north east. I think all hospitals in this region offer weekly oaclitaxel. 

I had the same diagnosis tried EC but left me feeling dead inside so am on weekly Paclitaxel x12 ( No 6 on Wednesday). Main side effect stomach disturbance, diarrhea to the point as soon as food hitstomach I need the loo Managing with lomeramide and codeine but not ideal