I was supposed to have my 9th paclitaxel this morning but was cancelled because I have had significant increase in numbness in my hands and some pain in my thumb over the past week,(even after onc reduced last weeks dose by 10%) My feet seem fine at the moment.My regular onc was on leave so the one on duty made that decision and said that they will see how I am next week and decide what is next. I am quite disappointed as I was getting towards the end of the chemo and want to get it over and done with. On the other hand I didn’t want to say everything was ok as I had read on a few threads here of the lasting damage PN can do.Has anyone had a similar experience?

Wise to be cautious. My fingers started reacting after dose 5, but it was my feet that rapidly got numb and painful (yes, possible to be both!). Worth asking about ice treatment (I haven’t used it but others have found it helpful, although best results may require using it right from the beginning) or even Vitamin B which I found helped. Many people find that the effects disappear after treatment ends but some (including me) have long lasting or possibly permanent effects. So yes, be cautious especially when you are so far through the course of treatment. 12 doses may be the preferred course but many oncology nurses feel that ten doses may be an equally therapeutic treatment and even my cautious oncologist was happy to stop at eleven. I persevered due to another discovery (turned out to be unrelated and benign but a bit of a scare) - no regrets, my side effects are perfectly manageable but hands are handy!! Best wishes.

@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 bestSending 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

Good luck @Caibo for your surgery, I will be praying for the best outcome for you. Also I hope your PN gets better, you have a lot of things to deal with all at once, go easy on yourself ;)

Thank you all for your support. The onc left it up to me today to make a call .As the neuropathy had gotten worse over the last couple of days and having heard from all of you that this often happens, helped me feel like I made a more informed decision. They seemed happy with the decision as well.So that’s me done with chemo! Yay! Now I have a few weeks to recover before having surgery which is great.Hoping and praying that the neuropathy gets better soon. So appreciate this group and all of you.Big hugs xx

Congratulations Caibo, chemotherapy done and dusted YAH! Onwards and upwards from here........All the best for your upcoming surgery.Stay positive, keep active, listen to your body and rest when needed.Big hugs xx

Paclitaxel Delayed | BCNA Online Network

Tinks
Member
5 years ago
@caibo @Shellshocked2018_ i am now 9.5 weeks since last dose of paclitaxel and 3.5 weeks after finishing 25 doses of RT.

Suddenly after I had got quite used to no eyebrows or eyelashes, they started to grow back. Eyelashes started full but short and are still lenghening, eyebrows quite hard to see when they started growing, but I could feel them, and now they are filling in and growing longer. Even some eyebrows that haven’t grown for awhile mainly because they are stray ones that I used to remove, have started coming back.

My hair is growing back and thickening up, it has come back mainly white to start with and now a bit of grey, but it is still too short to cut or consider any colour. people say it is thickening up steadily. My hair seems to grow back better around the back of the head and sides and not so strongly on the top of the scalp and towards the forehead to start with but that bit is filling in a bit now thank goodness.

I hadn’t thought of the massage, but it was such a lovely idea! What we used to take for granted!!

Any way, you have the surgery to come and I will be thinking of you and praying for the best.

Lots of love Tinks xx
Shellshocked201
Member
5 years ago
Hi Caibo, hair growth..... yeah I ended up with more grey than before, after a couple of months I went to the hairdresser and just had the tips taken off, to get rid of the fluff at the ends.
I have been colouring my hair with a henna colour from the health care shop , ( doesn’t have the nasties). Eyelashes grew back quite quickly., unfortunately eyebrows for me are taking the longest, thank goodness for eyebrow pencils.......

Enjoy this time with no treatment, treat yourself to some rest and relaxation, once things have improved with Covid19, have a massage, facial, treat yourself, you deserve it.

Sending hugs xx
Caibo
Member
5 years ago
Thank you for your kind wishes @Shellshocked2018_ & @Tinks. I have lost all but few of my eye lashes in the last couple of months.Eye brows not as bad,probably about 50%.My hair has started to grow back over the past few weeks very slowly and I can see a lot of grey fuzz! Looks like way more grey than I had before chemo. Trying castor oil to help with hair growth and yes trying to get strong before the surgery. Taste buds seem to be recovering as well and its nice to not have that horrible aftertaste. Trying not to think too much about the surgery until I have to.

Hope all is well your end.Hugs xx
Tinks
Member
5 years ago
@Caibo Moving on is great news you have done the hard yards! You have a window to recover from the chemo which is great as the body does take some time to do that I found. After paclitaxel I still went on losing eyebrows and eyelashes for a while.

Get as much rest as your body tells you it needs. Good time to consider the protein levels in your diet in too readiness for the repair jobs your body is/ will be doing.

Lots of love Tinks xx
Shellshocked201
Member
5 years ago
Congratulations Caibo, chemotherapy done and dusted YAH! Onwards and upwards from here........
All the best for your upcoming surgery.
Stay positive, keep active, listen to your body and rest when needed.

Big hugs xx
Caibo
Member
5 years ago
Thank you all for your support. The onc left it up to me today to make a call .As the neuropathy had gotten worse over the last couple of days and having heard from all of you that this often happens, helped me feel like I made a more informed decision. They seemed happy with the decision as well.
So that’s me done with chemo! Yay! Now I have a few weeks to recover before having surgery which is great.Hoping and praying that the neuropathy gets better soon. So appreciate this group and all of you.Big hugs xx
Caz1
Member
5 years ago
Hello, I had made it to 10 out of the 12 doses of paclitaxol, my reason for stopping was due to very low White cell counts, basically my body had had enough chemo! Numbness wasn’t an issue for me, I did cold therapy.
The lovely chemo nurses said that they basically push you till your body hits the wall. I found it easier to accept when she put it like that.
Tinks
Member
5 years ago
I think looking back on my own nerve issues you are right to be completely upfront about your nerve symptoms. Your onc will have been through this with many patients and years of experience.

While I did have slight reductions, I was happy (in the end!) to accept that and now my nerve symptoms are settling down. They haven’t disappeared 7 weeks later however so I think now thank goodness I had the cutback.

Lots of love Tinks xx
Nefertari
Member
5 years ago
Good luck @Caibo for your surgery, I will be praying for the best outcome for you. Also I hope your PN gets better, you have a lot of things to deal with all at once, go easy on yourself ;)
Caibo
Member
5 years ago

Nefertari said:

@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 @Nefertari, that’s almost exactly what happened to me.On the way home in the car, the PN started and I thought I must be imagining it. Didnt expect it to come on so suddenly as it had been so mild prior to that. I had quite severe pain for the next few days in my left thumb.I realized that it was probably the PN and that pain subsided after those few days.Although it remains somewhat sore. I also have some soreness in my feet this past week and have had to take Panadol to help with that.

Glad you had such a great response to the chemo and it all cleared up so well. How wonderful. As you might have read in the previous comments,it seems quite common for people to stop a few doses early on the Paclitaxel,so I am hoping that is what they decide.Really don’t want this PN getting any worse than it is.

I have had a partial mastectomy before chemo and all the tumor was removed so the chemo is for prevention of recurrence.I also have a double mastectomy coming up in June so don’t really want that to be delayed either.

Thanks for sharing your experience and for your encouragement. 🤗