Chemo-related Neuropathy

Hi Robbie @rob59, welcome to Connect. Thanks for advocating for and helping your friend. There are a number of discussions on neuropathy but I think the following one might be the most helpful due to the number of members following the discussion.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

There are also some links here that may be helpful to learn more about chemotherapy induced neuropathy.

PubMed.gov -- Treatment of Chemotherapy-Induced Peripheral Neuropathy: Systematic Review and Recommendations
-- https://www.ncbi.nlm.nih.gov/pubmed/30508986

American Cancer Society - Peripheral Neuropathy
-- https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy.html

JAMA Network -- Chemotherapy-Induced Peripheral Neuropathy
-- https://jamanetwork.com/journals/jamaoncology/fullarticle/2726030

UpToDate -- Prevention and treatment of chemotherapy-induced peripheral neuropathy
-- https://www.uptodate.com/contents/prevention-and-treatment-of-chemotherapy-induced-peripheral-neuropathy

Doe your friend have any specific questions they are trying to get answered?

Thank you for your response. There are no specific questions other than getting to the core of why her symptoms vary, some days worse than others and if there are medicines/treatments that are cutting edge that’s more than what she is currently using.

There are some things that will cause neuropathy flare ups. I know stress was one of mine but I only have numbness for a symptom and not pain. Here is an explanation of possible triggers for flare ups.

What Makes Neuropathy Flare up? Here Are 4 Common Causes and The Top 3 Solutions
-- https://nervepainguide.org/neuropathy-flare-ups/

I posted my neuropathy story and what has helped me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Great info! Thank you!

Hello, @rob59 - I wanted to add my welcome to Mayo Clinic Connect. What I would suggest related to a Mayo Clinic appointment for chemo-related neuropathy would be to click on this link, http://mayocl.in/1mtmR63, where you can connect online or by phone with expert appointment schedulers.

I'd also like to introduce you to @jenniferhunter, who might have some experience to share with being seen at Mayo Clinic and input related to neuropathy. Glad you also connected with @johnbishop, who may also have some thoughts on being seen for neuropathy at Mayo or may have some suggestions of other Connect members who are Mayo Clinic neuropathy patients and might join this conversation.

What are the main symptoms your friend is experiencing from the neuropathy, @rob59?

@rob59 – Sorry I missed the point of your discussion "what's the best department to get started..." and it's not Friday yet. @lisalucier thank you for jumping in and tagging me.

I was diagnosed with idiopathic small fiber peripheral neuropathy at Mayo Clinic Rochester. My primary care doctor at the local family clinic set up an appointment for me with a neurologist at Mayo Clinic. I had the EMG and several other tests a few weeks before I saw the neurologist who then did a physical exam of my feet, legs and hands. He even took a photo of my hammer toes to use in a training seminar he was putting together - after asking permission of course ☺ Sadly I left the appointment pretty bummed out because I only have numbness with my neuropathy and there are no drugs/treatments that help. He pretty much told me to watch the symptoms and let them know if it gets worse. That's when I started doing my own research and found Mayo Clinic Connect. @jenniferhunter started a really good discussion on Myofascial Release Therapy that I think is a good resource for managing chronic pain, including pain from neuropathy. Here's a link to the discussion:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I’d like to know too. Chemo finished 9 months ago now and neuropathy in both feet and chronic pain in right leg and hip has got wose

@geronimo1 @rob59, I'm no expert, but from what I understand chemo-induced neuropathy can vary depending on the type of chemotherapy and other conditions the person may have. For example, my 70-year old dad was getting a platinum drug (oxaliplatin I believe) that is notorious for causing neuropathy. Because he also had type 2 diabetes, they were concerned that his neuropathy could become severe and permanent. So they kept a close eye and diminished the dose if necessary. A 45 year old woman, who doesn't have diabetes taking the same chemo may not have the same issues with neuropathy. It could be less severe and temporary. So there are many factors to be considered.

I'd like to bring in other members who have talked about cancer-related neuropathy into this discussion, like @djanthony @elizm @cancersucks @karendb @ginpene05 and @brianellis

@geronimo1 what type of chemo did you have for what type of cancer?

@rob59, how about your friend; what type of cancer and treatment is causing the neuropathy?

Hi Lisa, Thank you for you response!...Her main symptoms are burning,aching in her feet and legs, sometimes to the point she begins to cry. Rubbing them with lotion and the right amount of pressure temporarily helps....Also, thank you for the info on @jenniferhunter! My friend recently has tried to make an appointment at Mayo but was denied. We're trying different avenues to try and get in to see someone. Thanks for your support!

Hi there. Thanks for your info
I had HER2 Positive Breast Cancer. The Chemo drug they gave me through a picc line was Paclataxyl. They stopped it after 10 rounds because my feet had gone numb. But still continued with 25 rounds of radiation and 18 injections of herceptin.11 months down the track my feet are still numb and my left leg from the hip down is in constant pain. I’m allergic to many drugs so try and manage the pain with foot soaks, oils and massage and osteopanadol. Any suggestions for further relief would be appreciated. Oncologist said if I still had it in a year it would be permanent, thanks for listening