Neuropathy

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steelrose
steelrose Member Posts: 3,798

For those of you who have experienced this, is there anything that helped? I have a lot of nerve damage from surgery to my spine and have been taking Gabapentin for years now but it doesn't seem to touch what I've had lately... foot/ leg neuropathy. I'm limping around now because of the pain and weakness. I hope it's chemo or Ibrance related but I'm scared that my spinal mets are acting up again! I have a scan coming up, but until then, I thought I would ask all of you about your experiences.

Thank you!

Rose.

Comments

  • AussieTracey
    AussieTracey Member Posts: 20
    edited May 2016

    Rose I have been off Ibrance for 8 weeks and my sore feet are so much better. I am on Endep for neuropathy but it had got so much worse in my 8 months on Ibrance. My onc just said that wasn't expected and didn't expect an improvement but definitely has

  • steelrose
    steelrose Member Posts: 3,798
    edited May 2016

    AussieTracey,

    Thank you so much for your reply! So do you think it was the Ibrance that caused your neuropathy? Did you have trouble walking? I'm so happy that you're feeling better!

    Rose

  • AussieTracey
    AussieTracey Member Posts: 20
    edited May 2016

    Rose I already had some neuropathy so I had the burning neuropathic pain. But my feet became so sore, red and were also dry and cracking. I was definitely starting to find it hard to walk. My onc just said that didn't happen in the trial literature. My feet have returned to pre Ibrance with some tingling and burning but controlled again with the Endep. And I am able to walk our dog again

  • sueopp
    sueopp Member Posts: 1,541
    edited May 2016

    Rose, neuropathy in my hands and especially in my legs and feet has been plaguing me for at least a year and has been getting worse - can't feel the bottoms of my feet. Definitely chemo related (herceptin/perjeta). Dr. Op and my oncologist put their heads together and I was prescribed 10mg of an old drug, nortriptyline, daily. This is an uber-low dose - clinical dose is usually 40mg daily, and nortriptyline was used in the old days for diabetic neuropathy. Results: helped almost completely with pain, but didn't help the numbness - I'll take it! Maybe discuss with you oncologist? Good luck - SUE

  • Bestbird
    Bestbird Member Posts: 2,818
    edited May 2016

    steelrose, I'm sorry you are dealing with neuropathy. Like other types of pain, it can be under-recognized and not always well-addressed by clinicians.

    Below from my MBC Guide is a list of possible therapies.You (and others) are welcome to request a complimentary copy of the 120-page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

    • Acupuncture
    • Alpha-Lipoic Acid (ALA)
    • Amino Acids
    • Calmare Scrambler Therapy Device
    • Capsaicin Cream
    • Herbs
    • Infrared Heating Pad
    • Lidoderm Patches
    • Massage
    • Milkweed Balm
    • Nerve Repair Optimizer
    • Neuropathy Support Formula
    • Physical Therapy
    • Reiki
    • Shoes that are Comfortable
    • Topricin Pain Cream
    • Transcutaneous Electrical Nerve Stimulation (TENS) unit
    • Acupuncture: According to one study, acupuncture both alleviated symptoms of peripheral neuropathy and increased nerve conduction.In the study, 21 patients received acupuncture therapy according to classical Chinese Medicine while 26 patients received the best medical care but no specific neuropathy treatment. Sixteen patients (76%) in the acupuncture group improved symptomatically and objectively, while only four patients in the control group (15%) did so.From: http://www.ncbi.nlm.nih.gov/pubmed/17355547
    • Alpha-Lipoic Acid (ALA): This antioxidant has been used as a treatment for peripheral neuropathy in Europe for years to relieve pain.In a study of neuropathic pain caused by diabetes, it was concluded that alpha lipoic acid leads to a significant and clinically relevant reduction in neuropathic pain.From: http://www.ncbi.nlm.nih.gov/pubmed/20421656
    • Amino acids such as acetyl-L-carnitine may help improve peripheral neuropathy in people who have undergone chemotherapy. From: http://www.mayoclinic.org/diseases-conditions/peri...
    • Calmare Scrambler Therapy Device:This apparatus has received FDA clearance in the United States for use in patients experiencing pain from cancer and chemotherapy, as well as other diseases. "Scrambler therapy" consists of a machine which looks somewhat like an electrocardiogram machine.Leads are placed on patients around the areas of chronic pain. Scrambled electrical signals are then sent to the brain that perceives them as normal, non-pain signals.Via this process, the brain is retrained to think that there really is not pain in the area that is being treated.It works differently from the more common Transcutaneous Electrical Nerve Stimulation (TENS) therapy.Whereas TENS is thought to work through the gateway theory of pain relief, scrambler therapy is thought to provide normal-self, non-pain electrical information via nerves that have been transmitting chronic pain information.Through a process termed "plasticity," this is able to retrain the brain so that it does not ascribe pain to the chronic pain area.A list of Calmare-certified treatment facilities is located at: http://www.calmarett.com/facilities/facilities.htm...
    • Capsaicin Cream containing an ingredient found naturally in hot peppers which can cause modest improvements in peripheral neuropathy.Doctors may suggest using this cream with other treatments. Skin burning and irritation may occur, but usually lessens over time. However, some people may not be able to tolerate it.
    • Herbs such as evening primrose oil may speed recovery from neuropathy. From: http://www.drugs.com/npp/evening-primrose-oil.html
    • Infrared Heating Pad, which uses infrared technology that can penetrate several inches deep into the body for pain relief and relaxation.One woman wrote that she started experiencing extreme pain in her liver, sometimes crying when a Percocet wore off.Initially, she tried it on her back for intense pain from bone mets and reported that her back pain almost completely subsided.
    • Lidoderm patches (especially for disc problems in the back), such as Voltaren gel, and/or Arnica cream may be helpful.
    • Milkweed Balm: One woman wrote, "I found this in a Cancer Magazine and decided to order 2 ounces of it. I am not into this kind of stuff but I have to say it has helped my neuropathy and other aches and pain.I slather on my feet at night with socks and AM with socks. Also on my 62 year old aches and pains. It is working well for me. I have been getting weekly Taxol since July and now finally have some relief."
    • Nerve Repair Optimizer (which contains Alpha Lipoic Acid): Several patients have claimed to have good result using this, and some use it in conjunction with Neuropathy Support Formula (immediately below).
    • Neuropathy Support Formula: Several patients have claimed to have good result using this, potentially in conjunction with Nerve Repair Optimizer (above).
    • Physical Therapy may in some instances help alleviate neuropathy-induced pain.
    • Reiki: Reiki is based on the belief that spiritual energy can be channeled through a Reiki practitioner to heal the patient's spirit. This is thought to help release the body's natural healing powers. Reiki is most often given as a hands-on treatment. There are many individual reports about Reiki's power to increase feelings of well-being and refresh the spirit. Some patients who were getting cancer treatment have reported an increased sense of well-being after Reiki sessions. One small controlled pilot study found that Reiki was linked with reduced pain in patients with advanced cancer.From: http://www.cancer.org/treatment/treatmentsandsidee...
    • Shoes that are comfortable, such as Dansko, Sketchers with memory foam, and Birkenstocks can help relieve pain while walking.
    • Topricin Topical Pain Relief Cream has been claimed to be very helpful according several people with painful neuropathy.
    • Transcutaneous Electrical Nerve Stimulation (TENS) unit, where adhesive electrodes are placed on the skin to deliver a gentle electric current at varying frequencies. TENS may be applied for 30 minutes daily for about a month. From: http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/treatment/con-20019948One person swore by an ultrasound unit called MPO US Pro 2000 Ultrasound Unit, which she used to help mitigate back pain.

    Also,

    • Antidepressants. Certain medications called "tricyclic antidepressants" have been found to help relieve pain by interfering with chemical processes in the brain and spinal cord that causes a person to feel pain.Examples include Amitriptyline, Doxepin and Nortriptyline (Pamelor) which sueopp mentioned. Additionally, some people experienced a significant decrease in neuropathy-induced pain when they took a prescription antidepressant drug called Cymbalta (Duloxetine).
  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2016

    That's a pretty good list from Bestbird as usual.

    I had some nerve damage which caused numbness, pain, all kinds of weird symptoms on my right side (due to a mammogram!). Acupuncture and massage helped, as well as physical therapy. My acupuncturist did not approve but the physical therapist provided me a bandaid with a needle which I stuck to my neck 24/7 and this also helped until it got annoying.

    I hope you find something that works for you and that the scans don't find anything unusual.

  • Becs511
    Becs511 Member Posts: 303
    edited May 2016

    I have a lot of permanent neuropathy in my left foot and ankles left as a side effect of years of chemo as a teenager. Prior to my breast cancer diagnosis, I met with a neurologist about it. He recommended Lyrca or Cymblalta to combat the symptoms. At the time, I didn't want to be on any drugs that were not totally necessary. Instead I tried physical therapy and it really helped. They taught me exercises and stretches that helped relax the nerves.



  • steelrose
    steelrose Member Posts: 3,798
    edited May 2016

    Thanks so much to everyone that replied. I'm taking notes for my next onc. appointment, and pushing onward!

    Love to all...

    Rose

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2016

    lack of calcium due to severe bone mets is also a cause I remember from somewhere over the rainbow ... No, I fid not take morphine.. This is canax talking ;)))

    Ebru

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