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Stopped chemo today after 20 weeks because of peripheral neuropathy
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.
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21 Replies
- Hey @Flaneuse, if you want to, enquire about oncology exercise physiology courses now. They can have long waiting lists but if you get yourself onto one now the timing might be good for a month or so after radiation. K xox
- @Flaneuse
Decision well made! You have given it all you can and now onto the next rounds - before long Rads will be over as well as and hopefully the neuropathy will have subsided.
You mentioned your age - highlights no matter what age BC can visit. I have a friend who will be 80 in a few weeks and has been through the BC journey in the last 7 years and finds herself with vaginal atrophy as a result of...………….I can't help but think what the! It doesn't seem right at all but it is what it is!
Take care and be comfortable in your decision - 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.
- @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
- 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
- Thank you for your support, @kmakm, @Afraser and @LMK74.
- 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 think it is a liberation. Chemo is done!
- @Flaneuse, your happy with your decision and that's great. Quality of life is important. The neuropathy can take a while to subside. Good luck with the next phase.
- 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.
