Paclitaxel

Hiya, 

I had docetaxel which is from the same family as paclitaxel. I didn't have peripheral neuropathy and a couple of my friends have been fine too. Where do you keep hearing about people with long term health issues? People who don't have any problems are not likely to be posting. 

Cwtches,

Gay xxx 

Hello Londonmum 

Perhaps I am one of the people who developed neuropathy from the taxotere....same drug?. I'm afraid wombat it has left me with permanent mobility problems . However, it is not really that common. I post about it only if it is relevant.  I suspected Annjac's problems might have a link due to some similarities but she has stressed how rare her reactions are and mine are nowhere as severe.

You may read a few people post about burning feet or peeling skin but often you also read from them that it clears up quickly or that they mention it early and take pregabalin which eases it rapidly. In the majority of incidents.....it has gone within six to nine months. 

My condition was partly my own error.....I didn't want to fuss and thought this was just normal side effects. In addition it coincided with the May bank holidays here which in 2016 all fell in the same week and because of that consultants, GP 's and infirmieres were on holiday. I wasn't feeling very well as I had severe sickness as well as very painful feet with which it was difficult to walk. I decided I didn't  want to drive an hour to see a locum oncologist  and locally, although I had a gp appointment, the locum was so slow that after nearly two hours of faintness and nausea, my husband insisted I went home. We should with hindsight have asked for a home visit but we still didn't  realise the significance of the problem. Of my contemporaries,  I am the only person I know who had this side effect. It is not very common in either this form or Annjac's far more serious version.

I have noticed that you are booked for 4 T. I was told that if the first locum I saw during the first session had recognised the significance of some of the effects I was mentioning, I probably wouldn't have had the major flare up during the second session because they would have reduced the dose and extended the weeks.. The final one had to be cancelled as it was thought I couldn't take any more of the drug. It was then I was told I could have had an 80% dose and four instead of three if the damage hadn't been done. 

I guess you have to ask the doctor whether he thinks you have a better chance of non returning tumours in your case. Percentage statistics are just that aren't they......you need the answers to be applied to you.

So to conclude.....yes,neuropathy does happen. Often it's  not pleasant but it's an irritant rather than debilitating.  Occasionally it can be serious but if you know the signs( and I can tell you those privately if you're still worried) and the fact doctors are considering neuropathy more these days......you probably have no need to worry.

Certainly I wouldn't  worry just yet.....get the FEC out of the way and see how you feel then.

Take care.

Love Karen 

Hi. I had 4xEC which I found very difficult, followed by 12x weekly paclitaxel. Paclitaxel was way way easier for me than EC. I was tiered, had diarrhoea issues (keep Imodium in), and a few irritants, but compared to EC, it was a picnic!  It builds up and I was very tiered, so I slept on the sofa a lot during the day, but I can’t stress enough that it was nowhere near as bad as EC.  I got a bit of peripheral neuropathy but not too bad, and it’s getting better now.  And it worked. I had a complete pathological response. No cancer cells left after treatment. Give it a go before you decide against it. Good luck xx

If I may add to Karen’s post;

My oncologist checked with me every week about neuropathy and stressed how important it was that I tell him if I had any symptoms. So if you go with it, then don’t be afraid to ask questions and make sure they know how you are reacting. Also, I had my first paclitaxel at 100% doze, and the other 11 at 80% because of the diarrhoea. (I also had my EC at 100% for the first 2, then 80% for the other 2, as my blood cells couldn’t cope.) 

My oncologist had a reputation for being extra careful so I guess I was lucky. xx

Thanks everyone.  I forgot to say that I had a mastectomy and two sentinel nodes removed in April.  One was positive (1/2), so had lots of scans over 4 weeks which were all clear.  I then had all three levels of my axiliary nodes removed and they were all clear so in theory it was all removed in April,  as i had clear margins and no lymphovascular spread. My consultant thought that I was a good candidate for the Optima trial and felt if  i was given chemo it would likely be because I was in the 50% randomised into that category. I've gone ahead with it,  but taking 5 months off work for chemo (and the $%^&& PICC line) which I possibly don't need and i hate taking drugs has been hard to justify to myself.My cancer was ER 8/8, PR 8/8 HER2-, and I'd be on  letrozole for 5-10 years (lucky me) after.  I'd also like a delayed DIEP reconstruction next summer and worry the chemo could affect my heart and or blood vessels. Maybe I'm overthinking it all though!