Neuropathy????: Hi everyone. I am on Carbo Caelyx... - My Ovacome

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Neuropathy????

JustKBO profile image
7 Replies

Hi everyone. I am on Carbo Caelyx( or at least I was) 4th cycle and I have the most weird sensation that starts in my right arm pit, travels across to my breast bone and down my arm to above my elbow. It doesn’t hurt but is like a million ants running around, well like pins and needles. Then it disappears until the next bout. I get it about 4 times a day. My oncologist said she’d never heard of it before. Has anyone else experienced this sort of thing?

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JustKBO
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Pishi123 profile image
Pishi123

Hi sorry to hear about your symptoms. I had different symptoms mainly tingling in my toes. It went on for sometime and disappeared after I finished treatment back in 2016. I wish you all the best and hopefully yours will disappear in time. Angela

January-2016-UK profile image
January-2016-UK

It doesn't sound at all like the peripheral neuropathy I have in my fingers and feet, which is more like tingling and numbness. It's interesting your oncologist has never heard of it so it may mean it's not related to the chemo at all. We all tend to assume everything is, so it may be worth checking with your GP in case it's something that as a generalist he may know about. Just a thought.

JulieP1986 profile image
JulieP1986

I only have experience with fingers and toes too. You could have trapped a nerve around your shoulder somewhere? I think I’d advise to speak with GP too. A physio referral may be required. Again agree we automatically assume everything is a side effect of chemo. x

JustKBO profile image
JustKBO in reply toJulieP1986

Thank you fir replying. Yes we do! Once you have cancer it takes over everything and you forget there are other ailments you can have. 🙄

Cropcrop profile image
Cropcrop

Hi JustKBO, the symptoms, or rather their location, is not like the neuropathy we’re all familiar with here. I have neuropathy permanently in both my hands and from the mid shins down to the tips of my toes, the symptoms sound just like what I experience so you’re an oddity but very interesting.

There is a condition called brachial neuritis which sounds similar to what you describe. I know somebody who has this and it came on without any injury. Maybe worth having a check with a neurologist to see if this is what you’re experiencing? Hopefully it’s just a temporary thing for you and once treatment ends these symptoms will too.

I hope the rest of your treatments is not too difficult for you and is a success. Stay safe ❤️Xx Jane

JustKBO profile image
JustKBO in reply toCropcrop

Many thanks. I have it in my groin now same dude vim wondering if the stent I have on that side could be causing it. Try to enjoy the sun. 🙂

dexta2005 profile image
dexta2005

I had the same thing, a while back. Nothing to do with treatment. Think I trapped a nerve. Use to get that sensation for 6 times a day for about 6 weeks and then it just went. x.

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