Neuropathy

thsizit7

Sudden onset of sever neuropathy in both feet! Can't stand or walk! Almost unbearable pain!

thsizit7

oops...Has anyone else had this? I have been taking Neurotin for 1 week today, they doubled my dose but still no relief yet! I don't know what to do! I can't wear shoes, or walk any further than the bathroom, so I am confined to the house. This is very debilitating...any feedback or suggestions would be appreciated!

Miserable in Ms

pwilmarth

Sorry to hear that you have developed neuropathy which is a common side effect of Taxotere. Have you discussed this with your oncologist?

I developed neuropathy after 5 doses of Taxotere and we stopped the drug right away. I have totally empathy for the pain you are experiencing, but if you stop the drug, the pain will get better and you will be able to return to a more normal life.

thsizit7

Pwilmarth - I haven't had Taxotere since last August. I did fine while I was taking it, with double pre meds, but I know it could still be the culprit. I am on Kadcyla now. Yes I have disscused this with my Oncologist. She is the one who put me on the Neurotin. She also started me on 50000 units of vitamin D, 3 times a week, and vitamin B12 weekly. I am trying not to take pain pills except at night, so I can rest and get some sleep. I may have to break down and take the pain killers during the day but they are addictive, (Dilaudid 2 mg every 2 hrs as needed)...I just don't want to get hooked!

I have never been so miserable in my life...grasping at straws for answers.

pwilmarth

I totally understand. I used to take Gabapentin which helped, but even a year after stopping Taxotere, I still use Vicodin at night to help me sleep. I don't know how much Gabapentin you are on, but it's a drug that they titrate up until your symptoms are better. You start at a low dose, daily for a week then increase to twice daily, then three times daily. If you are still having pain, they can increase the dose.

Diabetics frequently are troubled by neuropathic pain and it's not unusual to increase the dose to 600 mg three times a day without ill effects.

If that doesn't help, they can try another drug called Lyrica which I see prescribed quite frequently.

In addition, they often use an antidepressant named Cymbalta to help manage your pain.

But I wouldn't hesitate to use the Dilaudid if it helps. Or ask for a less potent narcotic.

I would also discuss with your doctor the option of a referral to a pain specialist or a palliative care specialist who will work directly with you on getting your pain under better control.

Please don't feel like there is nothing that can be done for your pain.

pwilmarth

One of the things that a pain specialist will tell you is that you need to maintain a steady level of pain meds in your system in order to keep your pain under control. The problem with taking Dilaudid so infrequently is that you never achieve a steady state with your pain management.

Now I understand your concerns about using Dilaudid and becoming addicted. It is a potent narcotic, one of the most potent narcotics available. But you can also try a less potent narcotic like Vicodin, which is combined with Tylenol. The advantage is that you need less narcotic to control your pain. And if you get into the habit of taking it at regular times throughout the day, you will have less problems with unmanageable pain.

You can also use drugs like Ibuprofen or Naprosyn to help manage the pain. But again, these drugs are going to be more effective if you take them at regular intervals throughout the day.

The other thing that you need to do is think about what is an acceptable level of pain for you - one that allows you to function and perform your normal activities. Doctors and nurses are taught to ask you to define your pain on the 0-10 scale, but you can use words like Mild, Moderate, Severe, or Very Horrible /The Worst Pain I Have Ever Had. You need to decide what feels best for you, but most people are going to be comfortable with pain in the mild to moderate range.

Finally, there are some over-the-counter supplements that many people use like Tumeric, Alpha Lipoic Acid, and Glucosamine. But you should ask your oncologist if it is safe for you to use these supplements with your current treatment plan.

All of these things are what a pain specialist or palliative care specialist can help you with.

pwilmarth

I wanted to add a couple of other suggestions that I found helpful when I was experiencing the worst of my pain related to neuropathy:

Sometimes it helps to apply topical creams to your feet. These will contain capsaicin or a menthol or an aspirin type product. You will find them under names like Icy Hot, Aspercreme, Salonpas. I used the Salonpas patches which were very helpful in relieving pain. There's something called Voltaren gel, which is also a topical cream and you may find that helpful. But you will need a prescription from your doctor.

I also found that I couldn't put anything with rough surfaces on my feet. I became very careful about the type of socks I wore. They always were loose fitting soft cotton socks with no rough surfaces and they couldn't be tight.

I chose my shoes very carefully. I wore a good pair of walking or running shoes with soft insoles. If I needed to, I used Dr. Scholl's gel insoles to help pad the surfaces of my shoes.

Today, my neuropathy is much better, but not gone. I don't need the patches or topical creams anymore. But tend to avoid socks and walk around the house with bare feet, which is something I couldn't do when the neuropathy first started.

And I am able to walk my dogs for 45 minutes every day.

blainejennifer

I've had foot neuropathy - nothing like yours, mind you, but I got a lot of relief from icing down my feet. I would mix ice and water in a dishpan and keep my feet cold as I could tolerate for about 20 minutes.

Also, just yesterday, the NP at the practice I go to was mentioning that TENS treatment was helping a lot of people in the practice with neuropathy. I'm on Halaven, and starting to get some numbness in my fingers and toes, so I was asking about various treatments.

Along with the other wise voices here, I'd also recommend keeping up a therapeutic dose of pain meds. I know it makes you feel like an "addict", but for big pain, it's really the best way to stay ahead of it.

Also, where does the pain start? Ankle down, bottom only, etc.? I was complaining about some weird neuropathy in my right pinky and ring finger only, and the NP said that it was occurring because of funkiness in my cervical spinal vertebrae. Could your foot pain be related to a lower spine problem, and not really be neuropathy at all? I ask this because of the suddenness of the pain, and the distance from chemotherapy. Neuropathy tends to creep up on you, but every one is different.

Hoping you get relief. I suffered nothing like you are, but I do recall how unfun it was to wake up with buzzing, burning feet throughout the night.

Bestbird

I am so sorry to hear you are suffering from neuropathy, which for some patients can be debilitating and may substantially interfere with quality of life.

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

Remedies other than pain medications for peripheral neuropathy-induced pain include:

• Acupuncture
• Alpha-Lipoic Acid (ALA)
• Amino Acids
• Calmare Scrambler Therapy Device
• Capsaicin Cream
• Exercise
• 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/peripheral-neuropathy/basics/alternative-medicine/con-20019948
• 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.html?f=Medical#panelid=EasternRegion
• 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.
• Exercise: Up to 60% percent of people with breast cancer and other solid tumors who receive taxanes, vinca alkaloids, and platinum-based chemotherapies will experience neuropathy.To reduce this side effect, patients are encouraged to discuss exercise with their doctor because a recent study comparing neuropathy symptoms in exercisers (those who undertook walking and gentle resistance-band workouts) vs. non exercisers concluded that exercise decreases neuropathy symptoms.From: http://www.eurekalert.org/pub_releases/2016-06/uorm-cae060316.php
• 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.

• Massage: Clinical studies show that massage and touch therapy can alleviate symptoms such as pain, fatigue, stress/anxiety, nausea, insomnia, and depression.From:http://www.mskcc.org/cancer-care/herb/massage-therapy

• 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/treatmentsandsideeffects/complementaryandalternativemedicine/manualhealingandphysicaltouch/reiki

• 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:

steelrose

Well, misery loves company so here I am! I'm so sorry you're experiencing this... It's truly awful. I'm walking with a walker now and was sent to a neurologist who diagnosed me with an autoimmune disease that I believe was triggered by cancer meds. But I haven't been on Taxotere, or any chemo that commonly causes neuropathy (Avastin, Xeloda, Doxil). I take Gabapentin as needed, sometimes three times a day for nerve pain. And I just had some steroid infusions which at least giveme some energy to get out of bed.

Bestbird's post is excellent and has been very helpful to me. Don't give up!

Rose