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mat71
@mat71

Posts: 1
Joined: Sep 22, 2016

Breast Cancer and Neuropathy

Posted by @mat71, Sep 22, 2016

Greetings to members just getting started and those that like me are in survivor ship mode. My aily prayer always s include my sisters and brothers in the fight. Can anyone tell me if they have neuropathy sensations from taking Medication daily(Letrozole) . I have had this now for almost 3 yrs. AM taking B complex tablets daily it has lessened it but it still happens some times very severe. But if this is all i got along with the interrupted sleep patterns, elevated cholesteral, weight gain( I work out 4-6x a wk and diet control) so just the little battles are okay but that neuropathy is not good. hang in there . .

REPLY

Hi, I wanted to just to say hello back . I am new to this sight and I see here that you are going through the same thing my mom is going through. Also, I lost my husband 15 yrs, ago to this struggle. I hope that you have family and friends that can give you help and comfort . If you need to reach out . You can always contact me . My mom is being treated for breast cancer and I know magnesium helps with nerves . what is exactly are the neuro issues having ?

@mat71 @laraineborek – a huge welcome to you both. I’d like to introduce you to a few other members of the Breast Cancer group on Connect who have talked about neuropathy and other side effects of letrozole. @cautiousoptimism @tinalove and @grandma41 will you join me in welcoming our 2 newest members?

@mat71 you may also be interested in these discussions where members are talking about aromatase inhibitors and side effects:
– Concerned about the side effects of anastrozole, esp hair loss http://mayocl.in/2d4tiKL
– Diagnosed in October 2013. Side effects http://mayocl.in/2cUxZbk

@laraineborek, so great of you to offer your support. You may also be interested in the Caregivers group on Connect.

I am on daily Letrozole 2.5 mg, & have the following side effects: Neuropathy in my feet, tingling in hands/fingers, weight gain, & hair loss. Have been on this Med for 6 years.

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

@msovercomer

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

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I @msovercomer and welcome to the Breast Cancer group on Connect. You'll notice that I moved your message to an existing discussion about breast cancer, anastrazole and neuropathy. I did this so you could meet other members of the group who are talking about this, including @susan24 @elizm @cindylb @jersey @theda and @cautiousoptimism.

Some other members have also talked about stopping anastrozole due to neuropathy and other reasons. Some were able to take another aromatase inhibitor like exemestane or letrozole. You can read more in this discussion:
– Concerned about the side effects of anastrozole http://mayocl.in/2d4tiKL

Have you talked to your oncologist about taking a different AI if the neuropathy improves with stopping anastrozole?

Hi, Mat71. To my knowledge, AIs are not what caused your neuropathy. If you had chemo before starting on an AI, especially if you were treated with a taxane (like Taxol), it can cause neuropathy. AIs simply reduce circulating estrogen. They can give you insomnia, bone thinning, weight gain (or loss), dizziness, nausea, etc. (or not)… but not nerve damage.

You say that you are taking a B-Complex. As supplements are not regulated, you never can be sure if the dosage is accurate. Get your B-6 blood level checked regularly as too much circulating B-6 can cause nerve damage, even though B vitamins are water soluble. There are also perhaps 6-8 other underlying causes for neuropathy for which your doctor can test you (like for diabetes.

Best of luck in solving this miserable neuropathy.

@msovercomer

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

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Hi, Misovercomer. I take two products to ease (not eliminate) my chemo-induced neuropathy. Topricin makes a homeopathic product called FIBRO Cream (I get it on Amazon) specifically for fibromyalgia and neuropathy. I also take a supplement, prescribed by a doctor of Chinese Medicine and Acupuncture called Zhi Bai Di Huang Wan. (I do not recommend obtaining it from any other source, however.) And lastly, there are times when icing my lower back helps a bit. Best of luck.

Liked by msovercomer

@msovercomer

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

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@msovercomer — FYI, I'm about to start a third product for the CIPN. Quite by accident (I was researching something else), I came across a supplement used by neurologists in Europe for various forms of neuropathic pain for the past 4-6 years, and they are reporting good results of up to 40-80% pain relief. It is palmitoylethanolamide (PEA), an endrogenous fatty acid amide produced in our body. The trick is finding it, unadulterated. I have resorted to ordering it via Amazon from the Netherlands (brand name OptiPEA), even though it has been approved by the FDA in the U.S. There are lots of great studies regarding it, posted on http://www.ncbi.nlm.nih.gov In six weeks, I should be able to tell if it works for me.

@msovercomer

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

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Hi @msovercomer,

I'm sorry to hear that the neuropathy is getting worse. I thought I'd mention the Neuropathy group on Connect, https://connect.mayoclinic.org/group/neuropathy/ where members have shared their experiences, suggestions, and insights, about neuropathy – you will warmly welcomed. I encourage you to go through some of the the discussions in this group, join in wherever you feel comfortable, or feel free to start a new discussion with your questions and concerns.

@colleenyoung

I @msovercomer and welcome to the Breast Cancer group on Connect. You'll notice that I moved your message to an existing discussion about breast cancer, anastrazole and neuropathy. I did this so you could meet other members of the group who are talking about this, including @susan24 @elizm @cindylb @jersey @theda and @cautiousoptimism.

Some other members have also talked about stopping anastrozole due to neuropathy and other reasons. Some were able to take another aromatase inhibitor like exemestane or letrozole. You can read more in this discussion:
– Concerned about the side effects of anastrozole http://mayocl.in/2d4tiKL

Have you talked to your oncologist about taking a different AI if the neuropathy improves with stopping anastrozole?

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The plan post surgery was to take AIs for 5 years. It took 3 months before the side effects really hit me: joint pain and weakness in my hands, fingers and wrists, numbness & tingling, in addition to general fatigue, which persisted. After 6 months, I transitioned to the second AI, hoping for . some improvement. No change, so after being on it for 6 months and continuing to be miserable, I took the last AI, recognizing that everyone’s experience is different. I continued treatment for another 6 months and quit. I am now contending with elevated platelets and a recent diagnosis of Essential Thrombocythemia, which makes me ineligible to take Tamoxifen, because of the elevated risk of clots & strokes. I am now looking at the prospect of taking a Hydroxyurea, which is supposed to be well tolerated. We’ll see.

@msovercomer

I am a 3 year stage 2 breast cancer survivor. I have had a mastectomy followed by chemo and radiation. One year after treatments were finished I had reconstruction that led to a severe staph infection and removal of the implant. Everything has healed well for which I am very thankful. My main concern now is the neuropathy that is getting worse. I have tried Tens socks, acupuncture, gabapentin and hemp oil in a balm form. I was recently taken off from anastrazole to see if that helps. My question is if anyone has any other suggestions that have worked for them since I really want to continue on some type of medication for reacurrence.

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@msovercomer : While doing research on non-invasive, non-drug treatments for CIPN (chemo-induced peripheral neuropathy) I came upon a note on the Mayo Clinic regarding Caltrane (Scrambler) Treatment Therapy for neuropathic pain. There are only 125 providers around the country, but both Mayo and Johns Hopkins find it promising. I have my first appointment on Monday. (For most, it is ten days of treatment over two weeks.) Some insurance companies reimburse for it… some don't. You may want to check out the Caltranett.com website which also lists the providers. If you don't have problems with a pharmaceutical approach, some people respond well to Cymbalta.

@elizm

@msovercomer : While doing research on non-invasive, non-drug treatments for CIPN (chemo-induced peripheral neuropathy) I came upon a note on the Mayo Clinic regarding Caltrane (Scrambler) Treatment Therapy for neuropathic pain. There are only 125 providers around the country, but both Mayo and Johns Hopkins find it promising. I have my first appointment on Monday. (For most, it is ten days of treatment over two weeks.) Some insurance companies reimburse for it… some don't. You may want to check out the Caltranett.com website which also lists the providers. If you don't have problems with a pharmaceutical approach, some people respond well to Cymbalta.

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Do you have the name right? I tried to search on it and did find something called Calmare scrambler. Is that what your talking about?

Laurie

I have triple-negative breast cancer and medications are ineffective against it. However, I was wondering if you have had chemotherapy as I suffer terribly from Neuropathy caused by chemo, according to my Oncologists and Neurologist. BTW, my Neurologist has been very helpful in prescribing medication (Neurontin) and procedures to lessen the severity of Neuropathy. Hope this may help you in some small way.

@roch

Do you have the name right? I tried to search on it and did find something called Calmare scrambler. Is that what your talking about?

Laurie

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@roch @djanthony @msovercomer Thank you, Roch! Yes, Calmare… Calmarett.com is the place. Chemo-brain strikes again. I apologize.

@elizm

@roch @djanthony @msovercomer Thank you, Roch! Yes, Calmare… Calmarett.com is the place. Chemo-brain strikes again. I apologize.

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I think this may be the story on Sharing Mayo Clinic that you read, @elizm
– Breaking Away From Pain With the Help of ‘The Scrambler’ https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Karen had severe peripheral neuropathy, a side effect of breast cancer treatment she received in 2002, that left her with constant burning, tingling, numbness and pain in both her feet.

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