Hi...I finished chemo 9 weeks ago now but still have very painful hands and feet. I noticed it after approximately 6 taxol, however i went on to complete all 12. I don't think its peripheral neuropathy as there's no numbess, it feels more like arthritis? I struggle to open things and its painful to walk. My oncologist says lets give it more time, there has been no improvement at all and I'm beginning to think this is how its going to be now. I'm concerned as i think i would struggle to return to work the way i am. I just wondered has anyone else experienced this? 🤔 Thanks 😊

I have Peripheral Neuropathy, the only tests given to me by the Oncologist were trying to pick up things off the desks, which I failed miserably and they also got me to close my eyes while standing up and I almost fell over. I stopped chemo four weeks ago due to the sudden and extreme onset of my symptoms. I got through four AC and then six weekly Paclitaxol before this happened. My symptoms included:- numbness in all fingers, toes, palms and soles of my feet even up my right leg, - I had no tingling or pins and needles but I did have alternate burning or cold sensations, and bad cramps. - excrutiating pain (like arthritis ) in my hands and feet- a burning pain in my right hip, stabbing pains in my right underarm- I could not close my eyes while standing or I'd fall overThe Oncologist told me it's different for everyone. I have been doing exercises for my hands and feet, they were given to me by the hospital physio and they have helped.The GOOD news is that when I woke up today my hands feel almost normal, the numbness has almost gone and they are not painful, so hang in there. You are so brave going back to work :)

I'm sorry to hear you're having this trouble. I've just finished typing on another thread that my hands have never really recovered from chemo. Though now Letrozole is affecting them as well.Initially I had no trouble with my feet but in the last few months my big toe joints in particular have been quite painful, sometimes making it difficult to walk. But I put this down to the AI.Chemo is strong stuff. My oncologist said I'd be back to 60 - 70% three months after, and back to 100% after a year. Many people I've spoken to who have actually had it say it's more like two - three years. Give yourself time.You can also try some of the complimentary medicines. I'm currently giving acupuncture a try. Hang in there, K xox

@Silba all the best with starting back at work. You are so very right i feel very stuffed up since chemo but I'm still here!

Taxol is really hard on your ligaments. Lots of us have had similar foot and hand issues that can't be described as neuropathy. Some win the major prize and get both. It's really sucky but mine improved very, very slowly. I ended up going to a podiatrist who, predictably, wanted me to buy orthotics. They weren't helpful--$260 for inner soles? Really?In despair I went and saw a different podiatrist who, predictably, told me the orthotics werent the right ones and wanted to sell me another pair. No. She did give me some basic exercises which helped. Really simple stuff, hang onto a chair and raise yourself up onto your toes. Do it in sets of 10 when ever you think of it. Stand on one leg and balance.I don't know if that's what turned my issues around or if it was just a matter of time, but it's worth a go. Mxx

What @zoffiel says about exercise is a good idea. It does help. If you can, try to find some sort of oncolgy rehab class (Encore from YWCA is a free one if it's available near you). If you can't find one, then an exercise physiologist who specialises in bc - you can get a referral on a plan from your GP. At the very least it will set you up with some good exercises to go on with.

Painful/stiff hands and feet post chemo

20 Replies

arpie
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6 years ago
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I am So sorry to hear your son's diagnosis & treatment @Trussy .... how heart breaking for you and the family :( I hope that the tumours remain slow growing & hopefully successful treatment further down the track.

Have you considered contacting Charlie Teo? He often goes where others fear to tread with Brain surgery?

Take care, all the best for your boy & your family xx
kezmusc
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6 years ago
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Easier to crack than codeine these days @Sister
kmakm
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6 years ago
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So sorry to hear about your son @Trussy. Big hugs to you both. K xox (a fellow picker!)
Sister
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6 years ago
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Tell 'em to give you codeine and be done with it - it actually works unlike the other things (but take it with caution).

So sorry to hear about your son.
Trussy
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6 years ago
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When they gave me the pages and pages of side effects of what the chemo could cause i remember feeling frightened and horrified...i never really gave it a thought that some of these symptoms may expand over years following 😱 stupid or what..
People think that now my chemo is over I'm good again!!
@Zoffiel that is a bloody fantastic analagy, and so true 😂
@DebbieMc you must be "a picker" like me i can never leave a scab or spot alone, big hugs to you, you sound like you've been through a lot. My son who's 23 had a craniotomy just 8wks ago, he has primary Brain cancer, unfortunately they can't remove all of his tumors but they are slow growing at the moment. Xx
Doin_it
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6 years ago
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I just want to hug you @DebbieMc 💜
DebbieMc
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6 years ago
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@Trussy Hello, I had chemo in 2014 but only 4 lots & my feet were stinging & the skin went really hard so of course I pulled it off despite the pain & made it worse. :o It was hard to get shoes on & off it was so painful, after chemo finished my legs were so sore when walking & I was put on new medication to stop the cancer coming back. Well the first lot did nothing for the pain so after a year I was changed onto another new one which was no better, so for 2 years post chemo I was in a lot of pain trying to walk. Then I was put on the old Tamoxifen which stopped all the pain but couldn't stop the cancer spreading to the brain, strange as the chemo was precautionary in case there were cancer cells left yet somehow they managed to stay & move upwards. :s
Now I'm back on the new medication since a brain tumour was removed in October and another is growing and it's possibly one I took after chemo. It's not brought back the leg pain so I often wonder if it was given too close to chemo & didn't allow me to heal well enough before trying it.
I hope they can sort out the pain for you, it takes a long time for pain from chemo to go even after finishing (well it did for me) but seek help if it gets too much as it seems you already have. All the very best. x
Nefertari
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6 years ago
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@Zoffiel, you are hilarious. That just about sums it all up <3
Zoffiel
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6 years ago
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Ya know, if chemo was a car and it was put on the market advertised solely on it's possible ability to, for example, climb a hill without providing any information about all the other stuff that can happen while you are in the vehicle, there would be an outrage.
Oh, it can also expose you to a variety of life threatening conditions and has very limited safety features. But you don't need to know about that because you bought it to climb hills.
Years of pain and mystery misery? Nah, we don't need to tell you about that. It's all about the hill climb.
Maintenance and service costs? Phhfft. We don't talk about that, and for fucks sake don't even think about warranty claims. It's all at your expense. Just remember that hill.
Random oil leaks, brake failures and exploding air bags? Why would we tell you all about that? Not our problem because it might, just possibly, get you up the hill.
Blossom1961
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6 years ago
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@Trussy Nope. No tests. After seeing four different doctors and numerous onco nurses about the excruciating pain without any answers, I ended up taking Ibuprofen which was a big no no. But it worked. My Oncologist then amazingly fitted me in when I explained to the medical staff that I would continue taking Ibuprofen until I could see her, no problems. I was serious, I was happy to continue on the banned Ibuprofen for as long as it took. The Oncologist then listened to my symptoms and said “that is peripheral neuropathy” That was it. Then she put me on Endone. Pfft. Didn’t work.