Looking for fellow Neuropthy people

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nobleanna007
nobleanna007 Member Posts: 641
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

    I was just wondering how many of us are out there and how severe it was. What was everyone's treatment plan for it. I am on Lyrica twice a day and am going to be moved up to 3-4 times a day. So far its not working. I tried the Neurotin route no relief. I am also on pain meds. I am unable to work due to pain and being clumsey and unbalanced. I am 7 weeks post chemo and I am ready for this to go away. I am so frustrated and bored to death. I have worked since I was 10!!!! Sometimes I feel like screaming and punching something. Its bad enough to go thru what we go thru but to have such lingering SE stinks! I am in the beginning stages of Rads I am going for TX# 8 20 more to go. I have also developed LE on top of all this. Of course I would LOL!

                 I hope I hear from some fellow Neuropthy people so we can try to get thru this together.

                                                             HUGS-Bridget

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    Bridget,

    I have suffered severe neuropthy do to a drug trial I did last year at MD Anderson.  I had very little neuropthy before this with the 24+ chemo tx.  I did four tx of a Phase I drug that totally disabled me.  This drug was weird because the worst was a delayed to about four weeks after stopping the trial.  I could not walk, sign my own name, barely feed myself, no typing, could not drive because of my palsy hands and was numb up to my knees.  I am a year out as of June 08 and still have on going issues that are much more manageable. My doctor's and family are blown away that I did rebuild these damaged nerves/muscles as much as I have.

    None of the drugs gave me relief either. I do take Lyrica for restless legs at night.  I don't like this drug after researching the side effects...can cause tumor's!  Like I need anymore.  But I need relief. I only take one at night.

    My secret to managing neuropthy is...Not just help the nerves but the rebuilding the muscles damage that occur's because you are moving your body differently. You now shift your wait more forward or backwards more than you usually do.  I asked for physical therapy to help rebuild my balance, the therapist also used infer-red heat into my legs, hands and feet. I had it so bad I needed to do occupational rehab to learn to use my hands again. I also did acupuncture that also helped me.

    I now have a massage therapist, massage my hands, feet and legs about every two weeks.  She told me about micro-current (a hand held Tens unit) therapy.  This sends tiny electric shocks into your muscles and nerve endings, to stimulate there activity levels. This has helped me the most. I also found I can use this on my LE arm, and this help moves the lymph fluid great.  You can purchase a micro-current device online for around $120.

    I back in chemo again (just did #5, this is my 5th set of chemos) and having a little more problems.  I have been able to manage it so far, but my doctor did have to lower the dose of Carbo.  This is going to limit me big time on what chemo's I can do next.  My doctor wanted me to do Ixempra and I would not do it because of the neuropthy. I also take supplements that are know to help stop nerve damage.  A good Multi Vitamin B & L-Glutamine.

    Flalady

    Just thought of something else that helped me...putting arch supports in my shoes.  Your arches fall due to the neuropthy. Also my right ankle wanted to turn in when I was at my worst...I used a ankle support wrap that helped a lot.  I know longer have to use this either.

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited September 2008

    Flalady,

                  Wow you have been through alot!!!! And to have to go back on chemo which you know is going to cause you a problem really stinks!!! Cause as you know this is a awful SE. Yours sounding so much worse then me.I congatulate you on trying to remedy your problems because as we know we are our own best advocates!!!! They pretty much have just stuck me on pain meds and said thats all that can be done. Well I ended up in the ER due to lack of sleep ans severe pain. The med they have given me I can't take it at night because it winds me up. Its great ewhen you need to get stuff done and it really did work good for the pain but I didn't sleep all night cause I ached and anywhere I slept was uncomfortable so thats where I got the Lyrica and diffrent meds. They kept me for 2 days to watch me and to see how I handled the meds. I am very sesitive to pain meds. I slept like a baby for 2 days it was awsome. They have helped me get a hospital bed in my home and that has been a godsend. But why do we have to go to that extreme? When I see my oncologist she never asks me about it. Unless I bring it up. The neurologist gave me a few more suggestions to try but basically he said there is nothing else he can do. Not one of them has mentioned taking b complex. And here is a intresting thing like you I don't give up and I am inwilling to stop trying to make my self better. There is alot of people out there who are being misdiagnoised with MS. Neuropthy and other nerve issues when they are actually have a B12 deficiency. And drs. know this but don't do the easy blood test for it they just give us the diffrent names of nerve problems. I am definatley not saying you don't have neuropthy but mine is so diffrent then yours. I do have the trembling up my arms and legs which start from the back to my toes. But when he did the nerve conduction tests I could feel everything in my feet including the needle conduction. The weird thing is I could not feel it in my legs. My reflexes were fine but balance off. He was not sure in the beginning that I had neuropthy but after the needle conduction test in my legs he said I did. Sorry don't by it!!!!!!!  I do get the buzzing in my feet when I flex my feet upwards. And I told him I have had a problem for years on one side going numb. I did have a MRI 2 yrs. ago for a sciatic nerve problem but they found nothing!!. So you tell me what is going on. I am going to ask or demand that B12 test and I going to go thru my primary for it. Cause some of this could be irreversiable at this point or with B12 shots I could get better. Its worth a shot NO pun intended!!! I am going thriugh physical therepy and I will bring the suggestions you have given cause all she is making me do is excercises. And they don't really help. All I want her to do is rub the pain out. I am going to follow through for 2 more appointments but will have to stop cause I have to see the LEOT and I only have 3,000 dollars in pt funds through insurance that is sad!!! So I have to end my sessions with the physical therepist which I should add I requested. I don't know if your docs are like this but man I have to ask for everything, its like you get done with chemo and they just think things are over with. It really bugs me. I will still be on Herceptin for a yr. But they will only see me as of now 1 a month.

             Thanks for letting me rant and rave but this is a awful way to live life!!!!!

                                                       Best wishes- Bridget

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    Bridget,

    You are so right about us having to find our own solutions.  I'm paying for the massage therapist without insurance. ($75 hr) No way will insurance pay for a massage when they can give you another pill that cost me $50 copay.  My insurance would not pay for the acupuncture either. My pt funds only $2,500...so I know what you mean. My main therapist was OK, but this lady I found is wonderful about helping me find solutions.  She is the one who told me about the arch supports too.  I did see a neurologist while at MDA because they wanted to evaluate how we progressed in the trial. (really... how fast we would crash) My PT also tested me for neuropthy.  I'm just consider a severe case. I found out later it was how this drug was administered in a fatty oil that made all of us on the trial of severer neuropthy. I'm just blown away that they do not know anymore about this than they do, but was quick to put me in this trial with very little disease at the time.

    I'm with you that we had to be proactive in getting our side effects treated.  I try to educate as many ladies as I can about being proactive in the care.  My SE did get better by 75% after stoping chemo for six months.  So we have hope we can repair some of this damage. My big problem is...I can't travel well.  Setting a long time kills my feet and hands.

    Keep trying to you find what work's for you.

    Flalady

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2008

    Here's an article on a study that I came across:

    Acetyl-L-Carnitine for the Treatment of Chemotherapy-Induced Peripheral Neuropathy: A Short Review. Review Article

    CNS Drugs. 21 Supplement 1:39-43, 2007.
    De Grandis, Domenico

    Abstract:
    Peripheral neurotoxicity is a major complication associated with the use of chemotherapeutic agents such as platinum compounds, taxanes and vinca alkaloids. The neurotoxicity of chemotherapy depends not only on the anticancer agent(s) used, the cumulative dose and the delivery method, but also on the capacity of the nerve to cope with the nerve-damaging process. The sensory and motor symptoms and signs of neurotoxicity are disabling, and have a significant impact on the quality of life of cancer patients. Moreover, the risk of cumulative toxicity may limit the use of highly effective chemotherapeutic agents. Therefore, prophylaxis and treatment of peripheral neurotoxicity secondary to chemotherapy are major clinical issues.

    Acetyl-L-carnitine (ALC), the acetyl ester of L-carnitine, plays an essential role in intermediary metabolism. Some of the properties exhibited by ALC include neuroprotective and neurotrophic actions, antioxidant activity, positive actions on mitochondrial metabolism, and stabilisation of intracellular membranes. ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment.

    Copyright 2007 Adis Data Information BV

    Acetyl-L-Carnitine (ALC)
    It is established that Acetyl-l-carnitine (ALC) improves non-oncological neuropathies, and there is some evidence that it can significantly reduce both sensory and motor neuropathy consequent to paclitaxel (Taxol) or cisplatin chemotherapy. A study by Maestri et al. (Tumori (2005): A pilot study on the effect of acetyl-L-carnitine in paclitaxel- and cisplatin-induced peripheral neuropathy [pdf]) found that acetyl-L-carnitine (1 g/daily i.v infusion infusion over 1-2 h for at least 10 days) seems to be an effective and well-tolerated agent for the treatment of chemotherapy-induced peripheral neuropathy. And Bianchi et al. (Eur J Cancer (2005): Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-L-carnitine) again evaluated the benefit of ALC in paclitaxel or cisplatin chemotherapy, confirming the findings of the pilot study and concluding that ALC (1 gram / three times daily) is of significant benefit in preventing progression or reverting symptoms during neurotoxic chemotherapy. This is in agreement with the conclusions of a recent review by neurologist Domenico De Grandis ALC who concluded that ALC "has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN)" and that "Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment" (De Grandis D. Acetyl-L-carnitine for the treatment of chemotherapy-induced peripheral neuropathy: a short review. CNS Drugs. 2007;21 Suppl 1:39-43; discussion 45-6.). Needless to say, next time I do a neuropathy inducing chemo, I'll be doing this.  The 3 gram daily is oral, so not hard to do.  I found a source on-line for it in powder form that you can add to something to drink.
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    I''m taking ALC also...but I found it after the fact.  You can't undo severe neuopathy.  Ladies be proactive.  I do ice my hands and feet during treatment. This does help some.

    One more thing they should be telling us upfront.

    Flalady

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  • GayleD
    GayleD Member Posts: 36
    edited September 2008

    My husband has bouts of diabetic neuropathy (he's Type 1 with onset as a teenager more than 25 years ago) and found that rubbing Ben Gay on the affected areas--for him his feet and legs--helped a lot.  I found the Ben Gay suggestion on a diabetes message board where several of the posters said that Ben Gay had helped their neuropathy.  I figured it wouldn't hurt to suggest it to my husband and see if it helped him.  At that point, his neuropathy was so bad at night that he couldn't sleep.  Thankfully the Ben Gay gave him relief.  I'm posting this in hopes that it may help someone else.  

    My best to everyone,

    Gayle

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited September 2008

      Thanks for all the great tips. Why is this stuff not told to us before hand???? Thats what totaly blows my mind when something is known to cause these SE we should be informed about what precautions we can do, whether they help or not at least we have tried!!!!  I know I was warned about the A/C and the SE and what they do to prevent them. Thank-god I was not able to have the 12 Taxol I was suppose to do they gave me Abraxane instead and I only had 4.

                Do you guys think after reading my last post that I may have something else? I certainly have not read or heard anyone else with this type of neurothy. I have just heard of the hands feet and sometimes ankle. Hot and cold tolerances etc. but I have none of those issues. So I am Stimped what do you all think???

                                                               Hugs-Bridget

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  • ananda8
    ananda8 Member Posts: 2,755
    edited September 2008

    My husband has neuropathy due to exposure to Agent Orange and he has been taking pantothenic acid and methylcolobalamin (B-12).  He has had significant reduction in numbness.  My brother in law also has neuropathy also due to exposure to Agent Orange.  He started taking pantothenic acid and methylcolobalamin and his neuropathy has been reduced as well.  Neither vitamin has any adverse side effects but still, check with your doctor.

    Best wishes. 

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  • gandl
    gandl Member Posts: 88
    edited September 2008

    I had a therapy at my chiropractor using electrodes on each leg which helped.  Neurontin helped me the most.

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