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
Hello Tulip29
I hope you do not mind me replying as I had a different type of cancer to yours (Mine was womb) but I saw you had posted about neuropathy and were a musician.
I am also musical and I remember talking to my consultant at my chemo consents appointment in detail about the peripheral neuropathy risks with paclitaxel. I did not have EC but another drug called Carboplatin.
I play the piano and a variety of other mainly woodwind instruments. For me it is also about quality of life and not losing the ability to do something I love. I could not at the time bear the thought of not being able to play.
I started to have the numbness and tingling in my hands and feet from the first cycle. My dose was reduced for the second cycle. The paclitaxel was the drug that was reduced as it was believed that one is the one that is associated with the neuropathy. By my last cycle the paclitaxel was reduced to 50% of the original dose. I did have other side effects but it was the neuropathy that led to the dose reduction.
My chemo was May2022-August 2022. I also had pelvic radiotherapy.
The situation now is that I have peripheral neuropathy and I try to manage it. My hands and feet have tingling, numbness and pain. It is pretty much there all the time. It sort of peaked a couple of months after chemo finished and has pretty much stayed the same since. I don't feel it has progressed at all since then.
I have been offered pain relief but am not going down that route yet. I find that walking regularly helps- anything that pumps the blood to the affected nerves, I figure has got to be beneficial. On days that I don't walk I tend to feel stiffness and more aching/numbness. Sometimes I do stumble a bit- it's a bit like when you sit on your legs, get pins and needles and try to stand up and you can't properly feel them.
My hands sometimes slip when I play the piano and sometimes my fingers sort of spasm. However the more I play the easier it becomes. I am not medically trained but from my experience it feels like I am almost training myself to play again if that makes sense .I have also started knitting- in fact anything that helps the blood flow to where the nerves are. I have also been advised to get one of those small spiky balls and to squeeze them- a sort of physio for the hands. I massage my hands (and feet) regularly. I have some fingerless gloves (for arthritis sufferers) and they have helped a bit. I also have some socks for neuropathy- compression ones- that do sort of take some of the aching away.
I have to be careful to wear shoes outside so as not to step on something and cut myself etc. When it is cold I seem to feel it more in my hands and feet so its woolly socks and gloves.
I think the best thing is to speak with your team, express your concerns and to find out if there is anything else that you can do to prevent getting any further damage and to talk about your current treatments.
In my case I was told that the paclitaxel was like the icing on the cake and it was the carboplatin that was doing the main work so that it was ok to reduce the paclitaxel and to keep the carboplatin the same. There may be options for you but your team would be the ones to talk to.
I have heard of people wearing gloves and booties during chemo to sort of ice their hands and feet but this is something that you would have to talk to your team about. I don't know how effective it may be. I do not have diabetes but do understand that that is another risk factor.
I haven't got the experience of the other medication that you are on.
I wish you well, but just wanted to say I do understand the musician bit- I felt exactly the same.
Jane
Good idea to put it in a letter and then you are able to get your thoughts across clearly.
If I had known what I know now- I would still have had chemo as the fear of recurrence was worse than the fear of the side effects however I would have discussed in more detail whether there were other chemotherapy options. I would not have stopped chemo.
My doses were adjusted to prevent further damage and that is worth discussing with your oncologist. In my case it was the paclitaxel that was known to cause neuropathy rather than the carboplatin the doctor said. On the positive side I can still play and it almost feels like I am retraining my hands if that makes any sense. I can attempt Einaudi again now so there is improvement. My feet bother me more than my hands and I think because I am doing so much fine motor work this is helping.
