Hi all,
This is my first post, I’m really hoping someone reads this who is a little further on with the same dilemma and worry I have, the stress is eating me up.
My diagnosis is stage 2 grade 2 triple positive. I’ve had a a mastectomy due to a 49mm tumor (I know…how did I not know that was there??) Then I had 3 rounds of EC chemo. Now I’m on 12 weeks of Paclitaxol, once a week, and have just had no 4. I’ve also just started Herceptin injections. Radiotherapy was initially planned after the chemo but due to an auto immune disease I have it was decided that RT was too risky.
The problem is after the 3rd Paclitaxel, my fingers started feeling odd. Not the classic tingling or numbness, just sore. I thought it might have been the herceptin and didn’t think much of it. But, when I reported this at my 4th chemo, the Oncologist who came to see me seemed quite concerned.
That was 2 days ago. Now the pain in my fingers and hands has got much worse, plus a slight bit in my toes. In the short term, I have no problem putting up with pretty much anything. But the oncologist was concerned this could be permanent. As it is right now, it would be life limiting. I use my hands for work and music.
Has anyone else had this amount of neuropathy so early on and if so, what happened? Did a reduced dose help, or having a gap in chemo? Or an alternative drug? I’m so scared that the chemo will have to be stopped and this will cause the cancer to come back.
Hi @amber2 - I was also going to write about that question. In my case I am on number 6 of 12 Taxol. At number 3 I reported quite casually as it wasn’t a particular problem but I felt as though had been playing too much guitar and fingers a tad numb (oncologist also said it could feel as though you have a bit of glue on your fingers). Oncologist straight away reduced my dose by 20%. And last session she kept it at that. She does not want me to have permanent damage was her reasoning. She also said that she has to reduce the dose in 70% of her patients. 30% she has to stop completely because of neuropathy. Other oncologists seem to be less concerned based on reports from another friend. I was worried that reducing the dose would reduce its effectiveness but oncologist was reassuring on that front. She would like me to try to finish the course instead and will keep it at -20%. 2 days before the next session my fingers feel normal.
I have been told that acupuncture can help, which am doing before the sessions and massaging the tips of fingers to get circulation going (finger massage ring apparently available on Amazon but have yet to check it out).
Hope the oncologist can reassure you before the next session.
I had 4 rounds of EC and then switched to Paclitaxol. After my first round of Pacli, the nerve pain was so bad that i could barely walk. Also had extreme breathlessness. I called the helpline but they weren’t very supportive. But saw my oncologist and he reduced my dosage by 25%. The pain and breathlessness havent been so bad with the 2nd round of Pac.
Two more rounds to go.
Hope it goes well for you xx
Hi, also started on EC than on to Paclitaxil… had nerve pain in fingers and toes but suffered worse with joint pain, felt as though I had been hit by a bus!! After talking to my nurse/oncologist, I took a weeks break and then continued with and 80% dose. Still some nerve tingles and joint pain in the first few days after but not the whole time. Worth asking for a reduced dose and/or a rest week… good luck with the rest of your treatment x
It sounds like you have a good Oncologist, Louise. I think I have too so we’ll see what they say. I should be getting a call back tomorrow. I think / hope they will have a similar attitude i.e. it’s important to try to prevent permanent damage.
Thank you all. It does sound like either a reduction in dose and/or missing a week will be the way to go. I’m a very stats driven person though, so would like to understand whether this has an impact on long term recurrance. But there again, I have to also think about the stats re long term neuropathy. We are all different and I know there is no right and wrong, but despite only being mid 50’s, I would still, if I had to choose, go for quality of life over length. I guess that’s because I’ve had many years of fairly poor quality of life in the past. So avoiding perminant neuropathy is very important.
I am thinking of trying the ice gloves/boots too as they seem to have helped a lot of people. I will look into the finger compression rings and also acupuncture too.
I’ve now had 11/12 Paclitaxel, I had tingling and numbness from about week 3. Some pain in my feet after walking.
I had an infection at week 8 so had two weeks off and found the symptoms went away. I’ve now had 3 more and tingling and numbness is back, it’s not all the time but you notice it. I’ve dropped a few things and buttons are fiddly.
My dose was 85% from the beginning and then after infection reduced to 75%. The oncology team were only concerned if it was permanent and persistent which it is not. Having the two weeks off with no symptoms makes me hope they will go away once I’ve completed my course.
There are many threads about Neuropathy so I would suggest searching and reading other’s experiences as much as possible. But as always our treatment is slightly different and we are all individuals and react differently.
Keep your team informed they will know what is best.
I’ve just had 6 out of 18 weekly paclitaxel and my dose is 120mg.
I have just been rested from it until a review after Christmas.
Apart from nausea I have had every side effect listed even though prior to this treatment I sailed through 27 cycles of Cape.
I’m looking forward to the break as it well and truly wiped me out.
As peripheral neuropathy hit with avengance in the last ten days I will be interested to see if this improves whilst on a break.
In 2022 I had 10 (of the originally scheduled 12 weeks of Paclitaxel - 2 missed because of an infection). The neuropathy started with slight numbness in fingers and toes that resolved in a few days. Once it got a bit worse than that, I had a 25% dose reduction for the final 3 infusions. I found it got a bit worse for a few weeks after I stopped, but eventually resolved (after a couple of months or so) to a small amount of numbness in a couple of fingers on my right hand, plus odd feeling toes.
In 2023, I had treatment with NAB-Paclitaxel, alongside Pembrolizumab, for metastatic TNBC. This time it was 3 weeks on followed by a week’s gap with a plan to do 6 cycles of this. It was also done with a 25% dose reduction from the start. After 4 cycies, I had an immunotherapy related adverse event which meant all the treatment stopped. Neuropathy hadn’t been much of a problem until the 4th cycle, where it seemed to suddenly escalate significantly including giving me issues with my genitals and my nose and mouth. I am unsure with hindsight whether this was the NAB-Paclitaxel, or the start of my immune attack. I have been on high dose steroids since September to manage the consequences of the immune attack. As the steroids have reduced (on a slow wean plan), the neuropathy symptoms have improved and I am again back to the couple of fingers on my right hand and the odd feeling toes.
I’ve noticed you mentioned genitals. Have the improved also? I am very numb there as well and thought it was because I was no longer on HRT. But maybe it from the Paclitaxel, this was never mentioned by the Team in clinic and when I was hospitalised at the cancer centre for an infection, even though I said I was quite numb down there but I though it was HRT.
I will bring it up again.
I went to Jo Divine and they talk about breast cancer and sex, recommend mini vibrator and good lubes that are not irritating. Not helping no sensation at all. There is a sonic device but it’s nearly £100. Dr Liz O’Riordan (breast surgeon with breast cancer) talks to Sam about this on a Podcast as well
I am on Abraxane (nab Paclitaxel) and noticed a slight numbness in one or two fingers a couple of weeks after my second dose. I spoke to my oncologist who asked where it was (fingers, not feet), how many were affected and whether it was painful or not. The normal dose went ahead on Thursday, but today the numbness seems to have spread.
Apart from the onco reducing the dose is there anything I can do? Keep hands warm/cold, exercises, massage? I have tried to look, but not found anything useful for self care yet.
Sorry, I missed your post.
3 months on from treatment the neuropathy has improved everywhere including genitals. I did have an immunotherapy related adverse event in September, which caused me to stop treatment with hindsight, I am not sure whether some of my issues stemmed from that, rather than the cumulative effect of Paclitaxel last year and NAB-Paclitaxel this year.
I can reach orgasm again now, although I am a lot more dependent on a vibrator than I was. The Womaniser works well for me. For other context, I am post menopausal, I am not on hormone blockers (cancer is TNBC) and I do use Vagirux oestrogen pessaries.
Thank you for your reply. I was worried it was just me and good to know it resolved. I had heard about Samantha Evans from the Davina McCall programme on menopause she runs the website www.jodivine.com I have tried a mini vibrator and lube to no effect. No feeling at all! Next step is to wait and see what happens or buy the much more expensive LELO SONA 2 with sonic technology ( it’s on offer with 30% off but still nearly £70)
I also post menopausal and stopped vaginal HRT with diagnosis. I was advised by the oncology team I can restart if I want with ER+, most recent research has suggested it has its ok to use. They did say to use vaginal moisturiser, which I already had for a while and see how I get on. I have continued with just the moisturiser from May and I don’t want to restart the oestrogen until I know it’s not the nerve damage. So I will wait a little while longer, although it’s not good for my relationship.
I put this in a new topic but just come across this one so posting in case it helps.
I wanted to share this study for those on taxol regimes like paclitaxel or the other one starting with a d
In the US it’s almost a given like the cool capping in most centres to use either compression gloves and socks or iced ones to prevent neuropathy.
The study shows no difference between the 2 so I’m going to do the compression. Brand doesn’t matter as long as the garments are 20-30mm hh.
Ask your hospitals if they offer this. I’m fortunate enough to have BUPA so my centre has the iced gloves but I haven’t yet asked about compression. They gave me compression socks post surgery so i suspect ut won’t be an issue.
I’ve found some much better priced options online if anyone would like some links and some cute designs for the socks.
Just thought I’d check back in now I’m nearly at the end of the Paclitaxol. I got to no 12 of 12 with one missed due to the neuropathy. They said they wouldn’t tag the missing one on the end, but have now decided to, so I have one more. I’ve gradually got worse with all other symptoms e.g. breathlessness, tiredness, sleep problems, but after missing one week at week 4 and having dose reduced by 20%, the neuropathy hasn’t been too bad.
By about week 8 or 9 it did start, but only mild. It’s stayed at a mild level. I’m pretty sure this is mostly due to cold application. How do I know? Well, I have been using ice packs, initially just on my hands. The hand symptoms stayed the same, but then my feet developed symptoms. So I then started chilling my feet as well - symptoms stablised. But then one week the ice packs weren’t chilled as well as normal ( mistake on my part). The symptoms got worse that week. The following week I was back to properly chilled ice packs and it didn’t worsen. Not exactly scientific, but does give a good indication.
Just out of interest, although I tried the gloves I didn’t get on that well with them. They could only be tightened around the wrists and I have tiny hands so they weren’t in contact with my hands much. I found I had to grip and squeeze the packs to be effective. So I actually found using standard “brick” type ice packs you would use in a cool box easier. I just wrap my hands around one and then swap over every 20 mins or so.
My oncologist suggested cold gloves and socks during this treatment. I should be starting soon so we shall see if they help at all but this is all making me so nervous!
If you struggle with the ice do definitely try the gloves and socks as the study showed that the results were the same for both but that people tolerated the compression better than the ice.
