Topic: Vent about Permanent Neuropathy

May 1, 2012 08:44 PM greytcruise wrote:

Cindy, very nice article, I appreciate your sharing it.  Anyone tried "Arnica cream"?  If it wasn't for the neuropathy I would still be in denial that I had this disease and life would be good again. 

May 2, 2012 06:03 PM Linda-n3 wrote:

Greytcruise, did you lose a lot of weight with chemo and treatment? I have similar problems with being cold all the time, thyroid is fine (had that checked). I talked with an integrative nurse practitioner about the concept of "adrenal fatigue" that I had read about - she is very open-minded about lots of possibilities, but said this is probably not a "real diagnosis" but certainly constant stress (such as being in treatment and having persistent neuropathy) can really wear us down and interfere with our major stress hormones, which also control body temperature. I lost 25% of my body weight and couldn't gain any back while I was on tamoxifen, but have seen some improvement in the last couple of weeks (have been off the tamox for almost 2 months). All of my symptoms get worse when I am tired, so rest is really critical. I also have seen a medical toxicologist who writes a prescription for a topical cream for my fingers that seems to be helping. None of the medications that the neurologist prescribed for me worked - she is an expert in diabetic neuropathy but not chemo-induced, and the meds just messed my mind up terribly. PM me if you want info on the topical cream. The medical toxicologist has been the most helpful so far as the MO, PCP (first one, not my current one), and neurologist just didn't help much. I agree with you that if it wasn't for the neuropathy, I would be able to move on with life. As it is, life kind of sucks much of the time, and I also wish I had never done chemo. Won't do it again - sometimes feel like I am just waiting for the cancer to come back and offer me a "graceful escape." Most of the time, I try to find "moments of grace" each day and enjoy those moments for what they are.

May 3, 2012 01:27 PM Linda-n3 wrote:

Moments of grace today: remembering that others are hurting and that I can be of some comfort.  One of my dear friends has MS and has been unable to participate in a Thursday morning study group that she dearly loves because of fatigue and weakness. Keeping her in love and kindness, and promising myself to call her but not tire her with prolonged visit.

Ali68, so glad your MO backed off the taxotere when you had SEs.  Hope the does the job and hope your SEs are less.  How many more do you have?  I think that is flurouracil/epirubicin/cytoxan?  Can't remember all the list I was shown when I agreed to TC - remember that CMF was supposed to be less toxic but also less effective.  Of course, as one of my sisters says, statistics just doesnt make sense: it's always 50/50: either you get the SE or you don't, either it works or it doesn't in the individual case - stats are based on POPULATIONS.

Right now I am personally working on the 50/50 rule, doing what I can to boost MY INDIVIDUAL immune system to fight off any cancer cells lurking and not worrying about it too much otherwise.  Most of my effort is into gaining some energy & strength back so I can walk, hike, play music (not piano or strings unfortunately), find things I can do that do not involve prolonged tapping of my fingers or fine touch.

May 4, 2012 07:39 PM Linda-n3 wrote:

Ali68, hope things went well for you today.

May 5, 2012 08:46 AM Gingerbrew wrote:

Ali68 congrats on end of chemo. !!!

May 5, 2012 03:20 PM Linda-n3 wrote:

Babysandpiper, I took glutamine and wonder if I got any benefit - hard to tell.  Very discouraging to hear it has been 4 years for you.  Yes, theoretically we should be grateful to be alive, and those words come out of my mouth when talking to most people, but I don't really always believe it.  Numb and tingly fingers constantly wanting my attention, not ever able to get my work done without discomfort and distraction.... takes everything I have some days to get through and at the end of the day I wonder why bother.  Still, I know there are positive things I can do to help others, and that is the important thing.

Ali68, you would be completely justified in doing bodily harm to your DH! But I am sure he is like my DH and many others - they really are terrified of losing us, and would rather have us even with disabilities than not have us at all (sometimes I do marvel at that, especially when I am grumpy).  What is next for treatment for you? Surgery? Hormonal therapy? Other? Best wishes always.

May 14, 2012 03:32 PM GirlPowerDebbie wrote:

I just found this thread ... I felt so alone!  I am sorry we have these issues as result of treatment, but now I know I am not crazy.  I had TAC x6, last treatment December 2011.  My neuropathy did not present until about a month after my chemo was done.  It is in my feet.  Numbness, tingly like foot is asleep.  And I finally figured out why I have been so clumsy, tripping & falling.  We were on vacation and I tripped, picked myself back up - there was no pain - then I saw bloody footprints where I walked.  I needed 3 stitches.  Then 2 weeks ago I was visiting a friend and missed their bottom step, fell and banged up my foot and a knee.  It hurts to walk up and down stairs.  And now that it is sandal season again, I find I have lost the ability to "grip" with my toes & keep my shoes on.  I feel more secure with tie shoes.  My doctors tell me it will get better as time goes on,  but I have the sinking feeling this is the "new normal".  God how I hate that phrase.

Thanks for the sympathetic ear.  Hugs to all.

Debbie

May 15, 2012 09:07 PM Gingerbrew wrote:

Girl Power,  There are some things you can try.  Accupuncture works for some people, the sooner the better the result.  I was told about this by my doctors, not some shady referral.      Gabapentin (Neurontin) is very helpful for some people.   Read back through the thread and you will find some hints.

Tie shoes yes.  I discovered how bad mine was when I had a booklight inside my slipper and I was walking on it and didn't know it.    My Onc ended my chemo two treatments early b ecause it got so bad.  It is still about the same for me nearly two years later.  I also get these rushes of feet electrocution. It hurts and burns. I am grateful I don't get them all the time. Some people do. My hands are affected but not as severly.    I too fall over. Usually I will have stepped on the toes of my other foot as I am getting up and as I turn to walk my stepped on foot is stuck in place and I go plop.    

I love slides so that is something I need to change so I dont seriously hurt myself. 

 I hope you feel less alone now and certainly less crazy. 

Welcome, Ginger

May 18, 2012 02:24 PM Cincerely wrote:

Hey y'all..... Has anyone with lymphedema and nerve damage have increased pain in the upper arm/arm pit area when walking.... Especially in the heat of the day? I love the warmth and heat of summer, as it makes me feel better than ever being cold. And I love the warmth of a well heated pool. It's the only thing that makes my right arm auctally feel warm inside. But.... I find that when I am in the heat, my arm and shoulder and hand screams in pain. Way, way, more than the usual daily pain. Since it is something I can point to, the heat causing these symptoms, I was wondering if it's something related to lymphedema. My arm does not swell, nor do my fingers/hand.

May 18, 2012 05:28 PM Lezza13 wrote:

It is nice to find this thread.  I thought I was alone with the numbness in the toes.  And walking a straight line.  That is tricky.  Thanks to the ladies about the idea with neurotin.  I may ask my onc for a script.  I take l-gllutamine for prevention but I am not sure if it is working.   Hang in there ladies.

May 19, 2012 02:20 AM lifelover wrote:

I stopped the Effexor and realised it had helped my neuropathy.  I had terrible withdrawal symptoms.  I should have weaned myself off of it in hindsight.

I realised I needed something more for my neuropathic pain in my arms and hands.  I tried Lyrica (pregabalin) and it made me too sleepy and brain dead so I stopped taking it.  

My primary doctor prescribed neurontin (gabapentin) for me just yesterday.  I also take amitryptaline 30 mg but my dr won't increase that because I have tachycardia.

I'll let you all know how I get on with the neurontin. 

May 20, 2012 04:33 PM Linda-n3 wrote:

Just a word of caution about B6 - too much can cause neuropathy also! So DO NOT take mega-doses!

Effexor did not work for me and it was hell getting off of it - took about a month with slowly decreasing dose every few days - I was only on it 6 weeks to give it a good chance to work, and was on the lowest dose. Neurontin (Gabapentin) also was not helpful for me and gave me OTHER horrible SEs. But what I know is that these drugs work for LOTS of people and do NOT cause bad SEs and lots of people tolerate them - I am glad that I at least tried them!

Anyone know if L-glutamine is supposed to be helpful AFTER you get neuropathy? Anyone have any experience with it long-term? Thanks.

May 21, 2012 02:53 AM Linda-n3 wrote:

Gingerbrew, my MO actually DID tell me to come off Effexor slowly, but then again, she is the one that told me it would "take a while" to get over chemo and everything else, without much specific timeline. I realize there are no absolute timelines, but there are some estimates she could make based on her general experience. So she said to come off it slowly, and I thought that meant over a week or so.... so after a week, I was on half dose every other day and started with the withdrawal symptoms - yes, very much like the flu- dizzy, nausea, aches.... so had to go up to half dose every day for a week, then took another 4 weeks to get off, and had no further problems. I knew I wasn't supposed to just stop it abruptly, but had no idea it would take THAT long to clear! Anyway, glad that little speed bump is past!

Lifelover, if the Effexor was helping the neuropathy, why did you go off it? You may have said in an earlier post that I missed.

May 21, 2012 11:24 AM Lezza13 wrote:

My onc said for the sore spots on my feet to put Udder Cream on twice a day and stay out of shoes and socks. He said excessive walking can irritate it as well.  I think I have that hand foot syndrome. He did not recommend a medication yet. I still take the l-glutamine.

Thanks for the tip about the B6.  BTW I take Xanax for my panic attacks and anxiety.  I am also on Wellbutrin which I know I will have to stop after chemo.  To me, the Xanax works the best.

May 22, 2012 05:00 PM Lezza13 wrote:

lifelover:  Hope your primary can think of an alternative for you while you are on Tamoxifen.  I know I have to give up Wellbutrin when I start that drug after chemo. Yes,  xanax is an addicting drug.  I will have to be weaned  off it one day myself.  I take super stress b vitamins every day not only for my toes but for my mind too!   Take care.