Paclitaxel Delayed

shs14 said:

Hi @Caibo, The cold therapy does sound terrible, but is really quite bearable and only needs to be done during infusion and for 15 minutes before and after. I worried a lot beforehand how hard it would be but lasted all 16 sessions. Even once when a friend came in to see me I left my hands in ten minutes too long because I was distracted! Might be worth it just to see you through the last of the Pac. Good luck with it all anyway. x

Hi @shs14,I guess you are right.If my onc wants me to carry on,I will consider trying the ice. I didn’t want to try the cold cap as I wasn’t prepared to spend the extra hours needed for that. I haven’t minded losing all my hair which has already started to grow back but PN is a different as it I am aware it can be irreversible. Praying that doesn’t happen. Thank you for wishes x

@Thanks Shellshocked2018_ said:

Hi Caibo, you have done the right thing about telling your Oncologist about your numbness and tingling etc in your hands, it’s very important that you are truthful.
My last 2 Pactlitaxel were at a reduced dose, as the sensations weren’t going from my hands from one week to the next.
Another lady and I were having treatment at the same time ,she on a few occasions had Pactlitaxel once a fortnight due to side effects she was having. I seem to remember that she didn’t finish the last couple. Both the oncologist and the chemotherapy nurses said that it is common that not everyone finishes Pactlitaxel, so try not to worry about it.
The main thing is not to have lifelong damage. 

Wishing you all the best

Sending virtual hugs xx

Thanks @Shellshocked2018_ ,  I feel much the same,like nothing has changed from last week to now, the numbness is still as bad and I have also been getting some additional shooting pains in my hands and some pain in my feet. I have had to take panadol every night to get some sleep as my feet and lower legs were achy.So glad I didn’t have last weeks Paclixel. Waiting to hear what the onc thinks on Monday. Definitely don’t want that lifelong damage. Thanks for your reply and wishes.Sending you the same. xx

@Caibo
I had a similar experience on Paclitaxol.  I was fine for the first 6 or 7, I can't actually remember which one it was that I  reacted to.  The PN came on so suddenly, maybe 15 mins after I finished and was in the car park. I wondered if I should go back to the chemo unit but in the end I was so damn tired I decided to drive home.

By the time I got home, it had progressed to both hands and both feet, so I called and told them and they asked me to go to the emergency dept, which I did when hubby got home.  Nothing they could do but at least they knew.

Like you, I was really disappointed because I thought I'm so close and I had managed the AC and the first ones quite well but I didn't want the PN to be permanent.

They decided to discontinue Paclitaxel for 2 weeks and see how it went.  The PN got worse, so they decided no more.  I had my scans and to my surprise and theirs, the tumour had gone completely, only a void was left where it had been.
  
My oncologist said that 12 is the standard amount of doses but I was very sensitive to that chemo.  I thought he was having a go at me  :p but he just meant it was the best possible outcome. 
They referred to it as a complete pathological response which I understand is good news,  the amount of chemo I had received had done it's job as there were only dead cells left and clear margins.

It is one year since I finished chemo and my hands are almost normal, just a little numbness in some fingernails.  My feet are slower to recover but a lot better than a year ago, not tripping over as much. So finishing early for me was not as terrible as I thought it was, hopefully you will have the same outcome.  Good luck xx

Hi @Caibo, The cold therapy does sound terrible, but is really quite bearable and only needs to be done during infusion and for 15 minutes before and after. I worried a lot beforehand how hard it would be but lasted all 16 sessions. Even once when a friend came in to see me I left my hands in ten minutes too long because I was distracted! Might be worth it just to see you through the last of the Pac. Good luck with it all anyway. x

Hi Caibo, you have done the right thing about telling your Oncologist about your numbness and tingling etc in your hands, it’s very important that you are truthful.
My last 2 Pactlitaxel were at a reduced dose, as the sensations weren’t going from my hands from one week to the next.
Another lady and I were having treatment at the same time ,she on a few occasions had Pactlitaxel once a fortnight due to side effects she was having. I seem to remember that she didn’t finish the last couple. Both the oncologist and the chemotherapy nurses said that it is common that not everyone finishes Pactlitaxel, so try not to worry about it.
The main thing is not to have lifelong damage. 

@Tinks  I couldn’t face doing any cold therapy.I am so not good with cold things and freezing was not a thought I could bear. You are brave..Well done. 

I will also check with onc about the possibility of it getting worse after treatment stops so thanks for mentioning that. That is definitely something I would like to minimize. 

It has also been good to know that many people get to this point and its ok to stop here if necessary. Will let you guys know what happens. Trying to make the most of this week off and do some things I haven’t had the energy for. Thanks for your support and wishes.Hope you are well xx

Thanks @Mazbeth for saying that,I was wondering all of yesterday whether I had done the right thing. I have decided to enjoy the week off and make the most of it. Feel like its also good for my body and hands esp. I will just have to be patient to see what they decide after I see the doc. Also  Yay you are almost done with yours and hope that the PN doesn’t get any worse for you. All the best to you too xx

I had paclitaxel 12 doses, but doses 11 and 12 were reduced by 25% each. This was due to the numbness and tingling problem. I did freezing cold therapy but with boots and mitts not ice.

Adding to what has been mentioned above, it is possible that the nerve problems get worse after the treatment has finished and the oncologist must take this into account, as well as the level of symptoms the person currently has.

 Nerve damage is one of the common side-effects of this drug that can last for years if not for ever and contribute to a significant reduction in somebody’s every day activities. 

Hi @Caibo I am about to have number 10 of taxol and my onc told me from the start that I wasn’t to panic if we had to stop at 9 because of side effects like numbing. He said it was important to speak up as it was important to avoid permanent damage. Your onc may be able to reduce your dose further. I have started to get tingly in my toes but it comes and goes and my hands are ok. I have been using ice from the start. It seems to be a balance for the doctors to us get through the treatment without leaving permanent issues. You have done the right thing letting them know as now they can make adjustments. The doctor said that a lot of the numbing should go once treatment stops and that is why it is so important we speak up so they can adjust/stop treatment. I know exactly how you feel about just wanting to get it finished and I am wishing you well. Take care. 😊

@Blossom1961,that’s good to know. I would be happy to stop now if they decide to stop it. Just hoping they don’t  delay it from every week to every other week. Not sure that they do that with paclitaxel anyway...So here is hoping 🙏🙏🙏
Thanks🤗