Mayo Clinic Connect
What’s the best Department at Mayo Clinic to get started from for someone who suffers with neuropathy from chemo treatments? Suggestions…for a friend!
Liked by Dee
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
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
American Cancer Society – Peripheral Neuropathy
JAMA Network — Chemotherapy-Induced Peripheral Neuropathy
UpToDate — Prevention and treatment of chemotherapy-induced peripheral neuropathy
Doe your friend have any specific questions they are trying to get answered?
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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.
Liked by John, Volunteer Mentor, Lisa Lucier
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
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!
Liked by John, Volunteer Mentor
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?
Liked by rob59, Robbie Hinton
@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
Liked by Lisa Lucier, rob59, Robbie Hinton
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?
Liked by John, Volunteer Mentor, Lisa Lucier, rob59, Robbie Hinton
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
@colleenyoung @rob59 @geromino1
Rob, from what I've learned, Mayo had to stop accepting neuropathy patients because there were just too many wanting help and not enough neurologists to see them. Most neurologists (and GPs) across the country are faced with a large segment of their patient populations suffering from one form of neuropathy or another. Gabapentin (aka Neurontin) has become one of the top ten drugs prescribed for any condition, despite it having little evidence that it works for pain. Put this all together and you can see how desperate patients AND doctors are over this inscrutable situation.
I have CIPN from 12 weeks of Taxol (Paclitaxel) for early stage breast cancer, complicated by it being HER2+++. Ap. 40-50% of patients receiving Taxol encounter some degree of neuropathy from it. The neuropathy began within two weeks when my finger and toe nails went toxic (turning colors and eventually lifting off their beds). Alarmed, my oncologist reduced the amount of Taxol two successive times, but the neuropathy continued to spread… my feet, legs, hands, arms were the worst, but I also would have periods when the numbness traveled up my backside, spine, and to my face and head. Perhaps I was susceptible to it all because of my age. I had just turned 70, two days after my lumpectomy.
I have subsequently learned that there were other things which they could have done to lessen the impact, but they were not atuned to those choices for whatever reason.
Now comes the hard part. Oncologists do not treat neuropathy… nor any other issues caused by chemo (heart-, lung-, dental-, ocular-, muscular-, emotional-, vascular-related, for example)… which means that a patient must be pro-active and go in search of who or what may bring relief. This can be frustrating and often disappointing. Some people do find occasional assistance with varying results.
I am unable to tolerate the pain prescriptions like gabapentin, amitriptylin, venlafaxine, opioids, etc.
I tried acupuncture, Calmare Scrambler Therapy, low-level laser therapy, various lotions/potions/creams (including those containing CBD) and pills, myofacial release therapy, and physical therapy. The foot of my bed is tented so that my bed covers don't touch my feet. I live in sandals to avoid socks and closed shoes. I use a special compounded cream for the petechiae on my feet which comes with a flare or too much exercise. I frequent a specialist in myofacial release therapy as the neuropathy has bunched my muscles into what she describes as "steel ropes." I attend (two-hours a week) a rigorous balance class with a physical therapist. Do a mile/day on a treadmill on non-class days, and do the exercises recommended by all the therapists in the evenings… despite extreme fatigue from the neuropathy. In other words, it's struggle to keep going.
For me (and I can only speak for myself), the OTC products which have helped are (1) Palmitoylethanolamide (PEA) which I purchase on Amazon (ErgoMax OptiPea from the Netherlands), (2) Topricin Fibro Cream, also from Amazon, and (3) Zhi Bai Di Huang Wan (an herbal supplement) which I get from a doctor of Chinese medicine & acupuncturist.
NOTE: I would not recommend buying the Chinese herbs over the internet or at a health foods store (I get mine from the doctor of Chinese medicine). It is a 200 yr. old traditional remedy for postmenopausal women experiencing hot flashes. Although I don't have hot flashes, it turns my feet and hands icy cold which is preferable to having them on fire. One of the herbs can raise hemoglobin as it is used to aid those with anemia (which I also don't have).
NOTE: The Fibro Cream is mostly arnica… nothing in it is pharmacological. It works within about 20 mins. for me.
NOTE: I came across the PEA as it is used in several European countries by neurologists for pain from various pathologies. Do not buy anything which is not ultramicronized (or it won't be bio-available), and avoid anything which has added B vitamins (B6 especially is toxic to nerves). Mine come as 400 mg capsules. I started taking it twice/day. It began working for me in about 3 weeks. Six months later, I often take it 3 times a days. Some clinical trials have used up to 2,000 mg/day for those with CIPN (that would be 5 of my capsules/day). It is a natural fatty acid amide and has no known drug interactions nor side effects (although I find that it makes me gassy/bloaty if I don't take it with a meal or some simethicone). After my "success" with it, my GP is taking it for his neuropathy. I occasionally switch back and forth with the Chinese herbs as I think my neurological system gets used to one and tries to ignore it, or wants me to take an increased dose.
The following may be of interest to you:
Liked by Hank
Thank you for your info. I will follow up the things that have helped you and see if they do the same for me. What is the address and cost of products from Nederlands?
As noted, ErgoMax OptiPEA is sold on Amazon (and shipped from the Netherlands).
Yours was a wonderful post! Thanks for all your hard work.
I am a physician, diagnosed with idiopathic small fiber peripheral neuropathy about 18 months ago, although, in retrospect, I had the symptoms for some time before the diagnosis. I have had the million dollar work/up at my local university, including a skin biopsy, which was positive.
Interestingly, my diagnosis of PN coincided pretty closely with the sudden diagnosis of other problems, including abdominal B-cell lymphoma, prostate cancer, and a weird one (oncocytoma of the kidneys). All of them, other than the PN, are very slow growing, and so far, have had no effect on my life. It's very hard not to think that one or all of my other diagnoses have something to do with the PN, but so far all my docs, including neurologists, oncologists, internists, urologists, etc. can't make a connection.
The PN, on the other hand, has had a dramatic negative influence on my life, although, as is common, everyone tells me I look healthy. It's like a bad joke. My symptoms are primarily severe burning when wearing shoes and socks, and freezing when going barefoot. In the last few months, it has been effecting my legs, so that pants and bed sheets are uncomfortable.
I have tried all the usual treatments. The only thing I can say helps for certain is warm weather! Interestingly, even when the sun is just out, I feel much better. To me, this indicates a psychological component. The other thing that may be helping is Duloxetine, I just started it 6 weeks ago, which is sometimes how long it takes to work, and now that the weather has turned warm, it's hard to know which one (if either) is responsible.
Elizm, I really admire the detailed and ordered approach to your post. In particular, I appreciate your references to articles in PubMed, which, of course, I use frequently myself. Are you a medical professional?
At any rate, should I relapse (which wouldn't be a surprise; as we all know, PN is a moving target), I intend to try at least some of your remedies.
Hello @jeffrapp, welcome to Connect. Thank you for posting. I also have idiopathic small fiber peripheral neuropathy only I just have the numbness for a symptom in both feet and lower legs. From what my neurologist told me only about 10 to 20% of those with PN have just numbness…not that it makes it any better. I'm with you on the warm weather. For whatever reason warmer weather seems to loosen the body and help with a lot of autoimmune conditions. Since you mentioned burning feet as one of your symptoms, there is another discussion you may also be interested in reading through.
> Groups > Brain & Nervous System > Burning Feet syndrome
You mentioned PubMed which is a great resource to help someone be a better advocate for their own health. Have you ever used Google Scholar (https://scholar.google.com/) to find medical research type information? I use it a lot because I like the feature of being able to sort the search results by year to get the latest information.
Liked by Lisa Lucier
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