Will Chemo PN get worse later as I age ???
 

Hello,

I have mild-moderate pn from chemo I had six years ago.

Does anyone know whether it will now continue to get worse as I age or remain fairly stable?

I have the feeling I am slowly getting more numbness and pins and needles but not sure how much more has crept up on me.

Thanks for any thoughts.

I have read six to twelve months before you feel better. Maybe others know. Hope you feel better soon. :hug:

Kitt

I have chemo induced np since 6 months. nothing have changed yet in any direction. Although in theory and according to literature it should not get worse after treatment is stopped, I have read from patients reporting that it got worse over time. But then others report small improvements in the first months and then stagnation, and others even very small improvements after years. My conclusion is that everyone is different and I force myself to believe that chances are better for chemo induced np as in comparison to diabetic and ideopathic np the cause is eliminated at least.

Big Thanks.

Yes, my followed the pattern most people report in the beginning.

Now that I'm looking at several decades in the future of living with the results of chemo pn, I'm wondering what tends to happen over the very long term.

may I ask what your development was in the last 5 years then? I would assume if it has not gotten worse, it will not in a decade or later if you do not add new damage to the nerves by diabetes, toxins etc.

I think it also depends on the kind of chemo.

Kitt

OP: Hard to know how long this PN goes on, I live with it going on 10 yrs from hip surgery...no chemo so I have no experience there.

I've posted about Inosine and Neuropathy and you can search that one for Nerve Damage issues....it's worked the best for me.

Thanks everyone for their thoughts. I had carboplatinum and taxol.

It got much better in the first six months, a little better in the first year, and has been the same since then, except lately I have felt the more burning, new jolts and zaps and the numbness spread to new areas.

Not sure if this is a temporary thing due to recent feet activity and so I became curious whether I should expect my feet to deteriorate as I age.

I have always learned way more from this forum than any doctor. :)

From a search on drugs.com:

Neurotoxicity (mainly peripheral neuropathy) occurs in about 10% of cases for taxol.

Taxol Side Effects: Common, Severe, Long Term - Drugs.com

I can not find a direct link to carboplatinum but assuming it is related to cisplatin neurotoxicity seems to be rare (less than 0.1%).

Cisplatin Side Effects: Common, Severe, Long Term - Drugs.com

Thanks for your thoughts.

Most of the chemotherapy drugs based on metals--
 

--are notoriously neurotoxic, so getting neuropathy from them is not surprising, although in my experience not a lot of oncologists will talk about the possibility before therapy.

On the other hand, you should consider the possibility that the exacerbation of your neuropathy is not from chemo; it could well be from something else, given that there are potentially hundreds of causes, and none of us are immune from being "co-morbid".

I assume you have regular check-ups due to your medical history, and it might be time to add a more comprehensive neurological evaluation to the mix, given the recent events.

There are lots of neuropathy diagnostic protocols in the Useful Websites part of this forum at the top of the topic listings, if you want to look at possibilities.

Again, loads of thanks for taking the time to give me your thoughts. All of you give me hope in reaffirming my faith in the human race. :)

I know what you are saying, although not scientific, my gut tells me my recent increase isn't from something else.

Yes, I had come to the same conclusions but I haven't found a neurologist I'm very impressed with and I'm not very keen to traipse in and out of doctors offices right now.

I find it hard to connect with long term "moderate chemo pn" sufferers.

I have nerve damage from chemo too, also did taxol, along with taxetere 10 years ago. I had some pain in my left hand & arm during treatment that resolved within a few months after my treatment ended. A few months ago I developed lymphedema ( after 10 years) & soon after began experiencing nerve pain in my arm. My doc thought it was likely from the swelling ( it was in my elbow) compressing the ulnar nerve. I had an ekg - nerve compression test - was found not to be pinched, but found old nerve damage to my arm & hand & they surmised it was from the chemo.

I haven't gotten any answers on how long this might last, maybe indefinitely?? It's all new to me & very puzzling. The lymphedema just adds insult to injury - it's hard to juggle both & hard to know how one might affect the other. I'm finding it to be very painful & am seeing an occupational therapist & a lymphedema therapist, but can't say I've seen any improvement in the 3 months it's been going on.

Yeah, very little info out there about chemo induced nerve pain...

Welcome Amanda2. :welcome_sign: Hope you find an answer.

Hi Amanda, welcome to the NeuroTalk Support Groups.

I'm guessing that if it was 10 years ago you most probably had a full lymph node dissection? I have nerve damage in my arm from sentinel node (3 nodes) dissection during melanoma surgery from 2017, although it extends from underarm to elbow on the inside of my arm. It's not in my hand. It's not uncommon to have damage to numerous nerves during these dissection surgeries. Mine is damage to the Intercostobrachial nerve but is mostly numbness these days.

I haven't had chemotherapy. I did have around 10 days on Targeted Therapy, Dabrafenib and trametinib (I have BRAF mutation)but had severe side-effects and it was stopped, and now on Pembrolizumab Immunotherapy. Even the short duration of the targeted therapy caused rapid onset neuropathy toes to knees but has receded in the past 10 months and now is only in my feet to ankles. It is much better now, but over the past few months it seems to have hit a plateau though so not sure that it'll change much from now on.

Do you know what triggered the lymphoedema recently? That's such a pain for you after all this time. I hope you're able to get some relief from that.

Thank you Lara:). I had 11 nodes removed & radiation along with chemo. I had arm & hand pain during chemo, but it was never diagnosed as anything other than " a chemo side effect" so I was surprised when the neurologist who did the emg told me I had nerve damage from the chemo ( she surmised, as taxol can cause nerve damage). I actually don't have a clue as to why the lymphadema flared after so many years - I guess cancer long term after effects are like that- they're unwelcome surprises.

The docs I've seen have told me that the nerve pain should lessen as the lymphadema swelling lessens, but there's no guarantee on that. This is uncharted waters for me & I'm finding that dealing with the 2 simultaneously is challenging to say the least. To keep the lymphadema from worsening I'm supposed to wear a compression sleeve on my arm, but that is so excruciating... I'm glad you've seen some improvement & hope it continues!

Thankyou.
The doctors have suggested that as the lymphoedema settles, so should the nerve pain. I know we have to be careful of infections and insect bites and cuts and the usual culprits to keep away lymphoedema, but what I would wonder is if the actual inflammation of the nerves caused the swelling in the first place.

Yes, exactly! I think that there's no way to know the answer to that...nerve issues can just appear out of the blue & so can lymphadema :)! When I ran the docs opinion that the swelling caused the nerve thing she was skeptical - said that lymphadema swelling is so surface, that it doesn't run deep enough to affect nerves, which are more deeply embedded. But when I mentioned that to the neurologist. she disagreed...So go figure :)