Neuropathy Newbies: Let's chat!

groucho2 · March 2017

There is already a thread for permanent neuropathy, but I'd like to start this one for those of us who suddenly found ourselves with numb, tingling, burning, and /or painful hands and feet. (It's called CIPN: Chemotherapy Induced Peripheral Neuropathy). This thread is for those who hope and pray the neuropathy will go away in a few months and will never get any worse.

They told me that CIPN was a possible side effect from chemo, but I figured I wouldn't get it. I never thought I'd have any side effects from chemo after I finished treatment and got the chemo drugs out of my system.

My CIPN started the week after I finished chemo with TC x 4. I don't have any pain, just the pins and needles feeling. I am able to function as before, but I really hope and pray the neuropathy goes away. It's irritating. I finished chemo four months ago; I've heard that it can take up to 3 years for it to go away, and that If you still have it after 3 years, you are stuck with it. Personally, I plan for mine to go away completely pretty soon. I hope I am not mistaken.

Anyone want to commiserate? Feel hopeful? Share what works for them, or what seems to make their neuropathy worse?

Let's get together and chat.

MinusTwo · March 2017

Groucho - There is such a wealth of knowledge and experience on the existing thread. I hope you won't pull away from posting there too as you make your way down this path.

All of us have or had hopes. My MO, my BS, my RO, my neurologist all thought I'd get better. And I did get "better", just not back to normal. Three years later, at least my fingers have mostly resolved and I can do up the zipper of my jeans by myself. I have dead feet but I'm fortunate not to have pain. I'm going to Yoga to strengthen my other muscles. Hoping that you'll be one of the lucky ones.

groucho2 · March 2017

I mean no disrespect to the existing thread, but it is "Vent about Permanent Neuropathy." It specifies that it is for neuropathy that won't get better and that posters don't want to hear optimistic comments about getting better. Newbies, like me, need a place where we CAN be optimistic! Personally, reading some of the posts in the permanent neuropathy thread scared me to death and were overwhelming! My neuropathy is mild and I have no pain. Y'all were very nice to me over there, but I don't feel like I belong in the other thread. I posted about neuropathy in the Flat and Fabulous group on Facebook last month and was overwhelmed by the many, many responses I received. It appears that us newbies to neuropathy might need our own place to commiserate and swap ideas and hopes.

There are wonderful hints and ideas on the other thread, but personally, it 's scary to read about really severe cases and disabling pain. I'd like for this thread to offer help AND hope.

MinusTwo · March 2017

Go for it Groucho. I wish you the best of luck as you battle CIPN

dcdrogers · March 2017

I began developing slight neuropathy 4 days before my 4th chemo treatment (I just completed round 5 a few days ago). It's at the very tip of my fingertips and thankfully isn't painful and there is no burning involved. My doctor has decided to continue on with my current treatment plan so no reduction in meds yet. We'll both keep a close eye on it to make sure if doesn't get any worse. I have one final treatment of TCHP left and I'm hoping that I'll be up to getting the full dose. So far no signs of neuropathy anywhere else has been noted.

Thanks for letting me share.

~Dee

groucho2 · March 2017

Hi Dee,

I am so sorry to hear that you've developed some neuropathy. It's quite a shock, isn't it? They mention it as a possible side effect, but no one I know ever thought they'd actually get it. I am glad to hear that you're not experiencing any pain with it.

The good news is, most women who get it during treatment get better. I'm so glad your doctor is working with you on this. Some people report they have had luck in either avoiding neuropathy or stopping the spread of it by icing their hands and feet during infusion with the drug(s) that is causing the neuropathy. It's the same principle as keeping ice in your mouth when certain drugs are infused to avoid mouth sores. However, if your doctor says not to do it, then don't try it. I don't a link to give you to thread that discussing icing, but it is mentioned in many chemo threads.

Vitamin B6 and B12 are helpful for many women who have neuropathy. I've found that Niacin is helpful for mine.

Good luck and best wishes for your final round of chemo.

elimar86861 · March 2017

groucho2, No disrespect to you or what you endeavor to do here, but honestly the Vent About Permanent Neuropathy thread is a long and comprehensive repository of info. about CIPN and, despite the wording in that OP, it welcomes ANY person with ANY level of CIPN and, over the years it has offered a great deal of both help and hope in a very realistic framework.

Like you, I have mild CIPN with mainly numbness and very little actual pain. With no other exacerbating health concerns, I began on the other thread optimistic that I could fully recover. Now, three and a half years PFC, I still have CIPN. Luckily, it does not hamper my daily living but I don't think I am going to make it back 100%. I still have hope to make it back to 98% of normal...call me optimistic. Good Luck to you too.

You state this is a thread for Newbies; therefore posters that cannot be sure whether their CIPN is permanent or not. At some point those Newbies will not be new, and some will have CIPN that has remained after 2-3 years, and some will no doubt vent about it. My point is you cannot split the hairs too finely on these threads.

Neuropathy Newbies: Let's chat!

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