Today - in discussion with my medical oncologist, whom I trust absolutely - I decided to stop my chemo after 4 X 3-weekly AC and 8 weeks of taxol. She has been concerned about my peripheral neuropathy for a couple of weeks; she said it would definitely get worse if I continued with taxol and could become permanent. This has been causing me anxiety since she first raised it. I can live with the numb and tingling fingers most of the time (though I've had a couple of accidents with them), but the tingling and stiffness in my feet prevents or disrupts sleep. As it is, she said it could take up to a year for the neuropathy to subside. At age 75, I decided to opt for the chance of a better quality of life post-treatment, for however many years I have left, rather than be "disabled" permanently. I feel good about the decision. Now begins the logistical battle to have prep for radiation brought forward if possible.

It's odd - in the past couple of hours I've felt so liberated. That won't last, of course, 'cos I know I'm not. But still. Making a key decision is empowering.

Sensible decision. I soldiered on and I don't regret it but I'd be really happy if the impact on my feet had subsided in a year. Five years on I think it's for life. It's not terrible, not painful just annoying. About the only thing I can't do is run. Much worse things happen at sea, but you've made the right decision for you.

I didn't even start taxol, I was too wrecked after TC and my onc says we can keep it for later ---how encouraging is that, Sheesh! I'm not surprised you feel relieved, it's awful to keep going backwards bit by bit. Some is better than none and common sense must prevail when it comes to pretty much certain ongoing disability vs a possible couple of percent decrease in recurrence chances. Enjoy your new found liberation! Mxx

@Zoffiel Thank you. I found it difficult to get to sleep last night - feet tingling as usual, tinnitus much worse than ever, and probably processing the day's big turning-point. I have still weird feeling of a fresh start, that the whole chemo ordeal is over, though I know of course the side effects will take ages to fade. The wonderful oncology nurse has already set up the new dates for radiation and I'll start that on 3 Sept. Fran xx

According to my onc, it's really not known if you need the whole 12 so don't get too stressed. You've done what you can and you don't need a permanent disability. Take care.

Stopped chemo today after 20 weeks because of peripheral neuropathy

21 Replies

Ellamary98
Member
7 years ago
My BC nurse didn't even phone me for the first 4 weeks, even though I had been introduced to her in person by the breast surgeon.Then, when she finally telephoned, she talked nonstop about her unwell child. I didn't bother after that. I have BCN envy though- my friend has almost finished her treatment, and her BCN was totally awesome. She even came to a recent concert fundraiser we had, and gave a talk to all guests about the best ways friends and family can offer support. It's hit or miss, I guess. :(
Anonymous
7 years ago
The user and all related content has been deleted.
kmakm
Member
7 years ago
I felt flat as a tack when my chemo finished @Marketta. You're definitely not alone.
Marketta
Member
7 years ago
Hi. I too have stopped taxol with these side effects. More my oncologist encouragement to stop!
4*3 weekly AC and 10 taxol
I was given the heads up early on that 9 is the “golden” number you try for.
6months has flown/disappeared.

im neoadjuvent so 4-6 week recovery then double mastectomy followed by radiation 5 weeks and continued zolerdex every month, herceptin every 3 weeks and hormonal therapy .

I should be excited? I should be throwing a party and doing back flips but feeling really under whelmed?!? It’s really confusing?

is it because I did t get to 12 or because my last session was last week ( unbeknown to me at the time) so I could t celebrate it as I wanted to?or because I still have a long road? Or because I’m scared to get my hopes up? I’m not quiet sure? Anyone else feel this?
Zoffiel
Member
7 years ago
That sounds like a job for the Consumer Feedback process @flaneuse If no-one complains the machine grinds on and the powers that be slap each other on the back and congratulate themselves on how well everything is going.
I've been absolutely blessed by having the best BCNs anyone could wish for. Those women have travelled with me through over a decade of breast cancer. Without their support and inside knowledge, mine would have been a very different experience. I've also been an asset to them; they load me with information that I can fire at appropriate targets which need a couple of well directed grenades.
If the person concerned is not performing, someone further up the food chain needs to know. Marg xx
Stork
Member
7 years ago
@Flaneuse can you have a word with the department manager about her lack of empathy and her appalling attitude towards patients.
Stork
kmakm
Member
7 years ago
Curses :#
Flaneuse
Member
7 years ago
@kmakm Unfortunately, no. She's it at the public hospital.
kmakm
Member
7 years ago
@Flaneuse Gaargh! Can you ditch her and get another??
Flaneuse
Member
7 years ago
@kmakm Thanks for that suggestion. I've been thinking of doing just that. I'm a member of a seniors' centre about 15-20 mins away and they have a well-equipped gym and exercise physiology program for seniors. I may ask my kids for that program as a Christmas gift.
I saw the physio today and she's very happy with my operated arm movement. She has given me a new very slow, gentle massage to do to try to drain some lymphatic fluid from two flaps near my mastectomy area. Shall see if that helps. Would have been good to have it some time ago, actually.
Had a phone conversation this afternoon with my bitch of a bc nurse. Her tone confirmed that I'm definitely on her black list since I was assertive before my surgery, in the face of their appalling communication.
The radiation people are being so fantastic in adjusting my dates.