Risk of Neuropathy

Hello everyone,

I am 7 weeks into a long treatment plan for ER+/HER2+ breast cancer. So far I have had two sessions of EC with two more to go. After that I start 12 weekly sessions of paclitaxel with injections of Phesgo every 3 weeks for a year.

As a musician I cannot possibly risk getting peripheral neuropathy as this one piece of joy in my life would be lost to me and I am already experiencing tingling toes on the EC.

My neuropathy risk is heightened by the fact that I have Type 1 diabetes.

I understand that the risky drugs are the pertuzamab in the phesgo and the Paclitaxel.

Has anyone on here in a similar situation asked if the pertuzamab could be omitted or the dosages reduced?

I am considering withdrawing from the treatment as Quality of Life is more important to me than quantity and would welcome the thoughts and experiences of others.

Thank you for reading my post

from Tulip

Hi Tulip

It’s a very worrying position to be in as you are dealing with an unknown. My friend had 3xEC and 9x paclitaxel and was unaffected by PN. She’s a violinist in an orchestra and, 8 years on, still plays unimpeded, apart from having to wear a lymphodoema sleeve. I had the same treatment and have never regained proper sensation in fingers or toes and my lifelong passion for creative embroidery has been scrapped as I can’t feel a needle even to thread it.

The important thing is to work with your team. This is your livelihood, not a hobby, and they must understand the implications for you. They will adjust your dosage according to your symptoms. They are correct in saying that, in most cases, PN goes away once you stop treatment but, equally, it might not so you must be sure they act immediately you get symptoms, with your livelihood as well as your life in mind. There are also other treatments - yours is the standard and most effective but ask about alternatives, especially the expensive ones they try to avoid using.

You haven’t said what stage your breast cancer is but, from the treatment plan, I’m guessing stage 3? As someone who was stage 3 and is now stage 4, I would urge you to discuss in great detail the ramifications of any decision to withdraw from chemotherapy. Quality of life is all well and good but how long will your life be? What would be the point? You need to know how your disease would progress without chemotherapy and how soon it might change to stage 4. Mine did it within months of completing treatment (but it’s a more complex bc) and I had the full works so there are no guarantees - except that your bc will spread and, fingertips or no fingertips, you will be in no condition to play with the same verve and joy.

Breast cancer is always unwelcome and, to some extent, always life changing but one thing is certain - you have to bend to its demands for the best outcomes. There is no resisting its spread, I’m afraid. If that means a change in lifestyle, there may be huge decisions - life or quality of life? It’s not an easy one for anyone to answer. If you have a good team, they’ll work with you but you may need to be persistent - some oncologists can’t see beyond the goal of destroying the cancer! Make sure your occupation is written into your treatment plan because you’ll possibly have different oncologists working with you and you don’t want the same fears and discussions ever time.

Wishing you all the best outcomes. Remember, this is just a personal opinion.

Jan x

1 Like

You need to ice while you go through the chemo drugs that are associated with neuropathy. There are a quite a few conversations that have been had on this site if you want to look them up. I iced while going through taxotere. No issues whatsoever. 

Dear Jaybro, Thank you for taking the time to reply to my message and for sharing your experience which is much appreciated. I was so sorry to read that you have been unable to pursue your passion for creative embroidery due to chemotherapy induced neuropathy. I am looking into the ’ice’ method but not entirely sure how to go about it. Do I put my feet in a bucket of ice? Not sure about hands. I hear one can get gel gloves but not sure if these would last for an hour and a half. I did look for another thread on it but haven’t found it as yet. Maybe if someone could direct me to it that would be a help. I do wish the oncologists would be more open about these things instead of expecting us all to learn from scratch every time. I have ER+/HER2+ ductal carcinoma grade 3 not in the lymph nodes. Thank you again for your wise words. I am collecting together all replies and will study them all very carefully. With very best wishes from Tulip x

Dear Kay0987, Thank you for replying to my message. ’Icing’ is coming up several times so will look into it if they can’t find me an alternative treatment. Unfortunately I am already getting the first signs of neuropathy on EC with tingling and pins and needles in my feet. I did look for other threads on this as you suggested but failed to find anything via the search bar. Maybe at 65 years old I am not techy enough! If anyone can direct me to useful threads that would be great. Not sure how to ice my feet - in a bucket? on ice packs in socks?

I am going to take two ice packs in with me for my EC chemo no 3 today and a frozen hot water bottle for my hands to see what happens.

Thanks again for taking the time to reply and I wish you all the very best from Tulip x

This is what I bought off of amazon when I started chemo. 

For hands - amazon.com/gp/product/B086VQ55JN/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

For hands also - amazon.com/gp/product/B086VP9PQX/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

For feet - amazon.com/gp/product/B003L4WOKG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

You have to change everything out every half hour so depending on how long you have chemo, you made need refills. Plus you’ll need a cooler to carry everything in. This is not fun I will be frank and say. In fact, it made chemo miserable and I was in tears quite frequently. Freezing can be painful. But I didn’t even have tingling with chemo. Absolutely nothing. My nails looked beautiful throughout. It 100% worked to protect my hands and feet.

Here’s a thread on this site though where it’s discussed. Good luck and let me know if you have further questions!


Hello Tulip
Sorry you’re having this treatment and it’s affecting you.
I had peripheral neuropathy with the chemo for bc and had terrible pains in my legs as well as painful hands and feet. I never lost any sensation in them though or any loss of movement.
The PN went after my treatment ended.
I understand you don’t want to lose your ability to play - it must be very difficult for you. I was really worried about not being able to drive and losing that freedom. But luckily it was fine and it did pass.
I hope it works out well for you and the treatment does its job so you can continue yours.
Best wishes, Lisa G

Dear Kay0987, (any other experience will help)

Thank you for sharing your experience. My sister in law is afraid of the risk of neuropathy, she will start the taxol drugs, unfortunately, we were not able to find much information on how to use the gloves and socks, we would really appreciate if you can answer my questions:

  1. We are assuming the gloves and socks will be used only during the chemo infusion (not before or after), correct?
  2. How many sets of cooling gloves and socks are needed during chemo infusion. Does each pair last 30 mins or less before it warms up?
  3. Can we take a portable cooler full of ice to transport the gloves and socks to the clinic or will they warm up too much? The clinic say they don’t have a freezer on site.
  4. Have you tried compression instead of or in addition to cooling hands and feet?
  5. What temperature do the gloves and socks need to be cooled to before they are used to work? is 0 celsius too warm and that they need to be cooled in a freezer rather than a fridge?
    Thank you so much,
  1. If I remember correctly you use the gloves and socks 15 minutes before the infusion, during the infusion, and 15 minutes after. You need to check on this though because I can’t remember for sure,
  2. You only need one set but you need two sets of the coolers that go inside of them.
  3. Yes you can take a portable cooler full of ice or a freezer pack. That should be fine.
  4. No I didn’t do compression.
  5. Keep the cooler sets in the freezer at home when not in use and then transport them to chemo in a cooler with either ice or freezer packs. That works fine to keep them cool enough. I never worried about temperature. I will say though you should be uncomfortable when you have them on.

Thank you so much Ray0987, really appreciate sharing your experience.