Paclitaxil (Taxol)

Hi

Yes I’ve been on taxol twice now. Once in combination with carboplatin and then more recently as part of a clinical trial. The side effects do look daunting (don’t they always?) but of course we don’t all get all of them. 

The most significant issue for me was fatigue. This increased as time went on. I did lose my hair both times. I had a wig but didn’t wear it, preferring instead a combination of head scarves and cashmere beanies in cold weather. 

The side effect my team was most keen to manage was the peripheral neuropathy. I had tingling in my fingers and toes for a couple of days after each dose. When this lasted longer than a couple of days they reduced the dose. Peripheral neuropathy is usually not reversible so they were keen not to leave me with long lasting issues. 

I hope this helps. Good luck! 

Xxx

Hi

I had 18 weekly doses of Paclitaxel last year after 18 months of Capecitabine.  Like Daloni my main side effect was fatigue. I was okay for the first 12 weeks but the last 6 were like wading through treacle. I think I am going to find that I have progression this next scan but that is a full year since finishing Pac which I think has lasted me well. Worth the faff of PICC lines and weekly trips to the hospital anyway. 

Hi Robyn,

I have had more than 60 doses of paclitaxol, and on the day of the treatment I am wiped out for about 3 hours, but after a sleep feel fine again. Usually 2 days later, my energy levels get low by afternoon but again they pick up by day 3. I do have changes in sense of taste for a couple of days, and I have had some very minor loss of sensation in the very tips of some fingers, but nothing which causes me any problems. Reading the side effects is always horrendous, and had any one told me I'd be having this many treatments of anything I would have disbelieved them. However it is working so far, and given it is perfectly tolerable for me, why wouldnt I? I know I may be very lucky and I know not everyone has a smooth ride, but hopefully there are plenty of others who find it tolerable too.

When i first went onto it, I stopped work assuming I would get more and more tired, but after 6 months decided I could go back as it didnt cause the cumulative problems as I anticipated. I have it 3 weeks out of 4 and do look forward to week 4 but am immensely grateful for the positive results so far. I wish you lots of luck with your treatment and hope your CT results are good

And that’s why this community is invaluable, ownedbystaffies! Thanks so much for sharing your positive experience. 

Xx

Hi.

I didn't manage as long as the ones above on paciltaxol (I did 4 cycles) and I also only really had fatigue as a side effect.  I also had to nap on the day but then felt fine.  Continued to work through (other than treatment day).  

Unfortunately for me, the cancer is intelligent and become resistant to it.  I then did a stint on Eribulin but had the same issue so now on Capecitibine.   Have done a week now with little side effect so hoping not only I don't get much but also this is the one that will work.

I am having 18 weekly doses too I'm on no 9 this week had 2weeks off as was not well. I mainly get fatigue. My pain had got less though so hoping when I get scan in a couple of weeks it will show anmprovement.

I am having 18 weekly doses too I'm on no 9 this week had 2weeks off as was not well. I mainly get fatigue. My pain had got less though so hoping when I get scan in a couple of weeks it will show an mprovement. 

Thank you for your replies everyone.  I too, like Daloni, am aware of the benefit of asking questions and getting people's responses, and especially when they are positive.  And the normalising that comes when I read of your journeys that mirror mine one way or another.   Thank you for sharing your experiences and the things to look for.  

The change of chemo feels overwhelming; these past two days I've been just profoundly sad.   I know that this is similar to last time things changed, but this time it feels bigger.  Perhaps because time keeps going on doesn't it?   And now knowing I will look as if I have cancer (hair loss) means I can't quite slip under the radar when I'm out when I want to.   I want to say here that I'll pick myself up, but I'm refraining from doing so because I want the permission to just be bloody sad today.  And why wouldn't we be from time to time.   

I'm learning to let people see me that way too without feeling I need to buck up so they feel ok.    I had a brother drop by earlier and when I didn't make it better with some quip or overview of the bigger things in life, there was this awkward silence, which I'm proud to say I just let be.  And noticed that he can't really engage with what's going on for me.  I've always been the affirming pleasing sister and it was so noticeable that his conversation is mostly about himself and when I didn't ask, well......  However, I realise he's doing what he knows how to do so I'll just let him do that, and choose to be with friends who are not quite so self absorbed.

Much love x

Robyn

Hi

yes you are totally allowed to be sad for a while. You’re right. It just keeps on going. Cancer. The gift that keeps on taking. I do think these changes take some getting used to. I think it’s like a snow globe being shaken. It’s all a blur for a while before things settle and the tableau emerges. 

I know what you mean about self absorbed people. Sometimes they are just what I need, mind you. They help me take my mind off myself. 

I hope you feel cheerier soon 

lots of love 

xxx

Thanks Daloni for perspective, and for the snow globe analogy.  Gee I liked it.  That's exactly the journey isn't it.  Blurry for a while until the tableau emerges and we walk again inside the new parameters that then become our new norm.  Thanks for the thoughts. xx

Robyn