Vent about Permanent Neuropathy
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DawnMik: The neurologist I saw likes gabapentin the best. After that she said she would prescribe Lyrica. I'm resisting taking either since I HATE drugs & am tired or sorting side effects. She told me to call if the pain gets intolerable (I have a REALLY high pain threshold) or it gets to where I can't sleep at night.
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minus two, good luck with Lyrica I can't say many on here have gotten much relief from it. It seems the oncs just heard its what you give and they all prescribe it and tell you how it takes a long time to start working. Pffffffft.
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Chickadee: I'm not going to take Lyrica or anything else right now. Just making note that it was the 2nd choice of the neurologist (after gabapentin) . It was the 1st choice of the podiatrist - who will remove the hanging 1/2 big toe nails when I finish this chemo. My onc hasn't weighed in yet - well I haven't given him a chance. Tomorrow's the day he has to convince me to do the last chemo tx. Unless he can present something very compelling, I will refuse it.
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Dawn, that cold burning thing is so frustrating and hard. I don't know what to tell you, it is why the thread was started. I'm not much older than you and I ended up giving up many many things I loved to do and my career. Neuropathy sucks and we have a right to be angry when we're just brushed off and told it will go away
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Winter/cold weather is the worst time of the year for my nerve damage. Even when its 100 degrees outside, my right arm/hand feels cold to me.... but not as bad as this time of the year. I am currently taking Cymbalta 60 mg once per day, Gabapentin 1200 mg spread out during the day, and Nortripyline 75 mg at bedtime. These drugs take some of the edge off of the constant stinging, but thats it. I still get a lot of breakthrough pain throughout the day and night. Sleep is disturbed with many occurrences. I have more written about this plus several links to publications that are helpful with understanding our nerve damage. Sadly, there is nothing to reverse the damage and elimination of the progression. Stem cell research can bring us all so much once the break through the ceiling.
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Cincerely, you might want to go back a bit in this thread and investigate the compounded cream a couple of us are trying. My stinging and lightening shocks are gone. Numbness and the little tingle from that hasn't changed but its tolerable. I take enough damn pills. I do think that the one Oxycodone I take at night also eases things because when I awake my feet don't bother me until I start moving about during the day.
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I'm just starting to deal with a small amt of neuropathy in fingers/toes from taxol. In addition to B6 I kept reading how L-Glutamine really helps some women. Was somewhat hesitant cause on the bottle it says supports quickly dividing cells. However, I checked it out with NP and MO that has a side degree in supplements and was given the go ahead. So last week I half hazardly tried it out. Have read the powder mixed in a small amt. of juice for a total of 30gm a day is the way to go. Have to tell you, I've seen a reduction in symptoms already. I'm very surprised and don't know if this will last, but thought I'd pass this exper. on. I figure, what the heck, might as well try it.
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SyrMom - Are you finished with chemo? I'm wondering if you're having luck with the L-Glutamine further down the road? I couldn't force it down during chemo but still have a big container in the cupboard.
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MinusTwo ... no, not finished with chemo ... no end in sight since I'm stage 4; I will be pulled off taxol if neuropathy worsens, so I'm encouraged with the results I'm getting from taking L-Glutamine for only 1 week!! Never expected it to make this much difference!! I took the suggestion on the weekly taxol board and mix it in a small amt. of juice, some mix in water, and drink it down. It really has no taste per se, just makes the juice alittle weird. Most have reported taking it three times a day; I've been averaging twice a day. I also take the B6 three times a day with meals. Just hope the positive results continue. An NP told me a patient she had was starting taxol with neuropathy from a previous chemo and had fantastic results from taking this. She claims her neuropathy resolved. I will be real happy with any improvement and if it holds off my symptoms getting worse.
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Has anyone tried Nortriptyline?? Doc suggested it instead of Gabapentin. I just got off of that. Was on it almost 3 years.
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Hello ladies,
Just wanting to talk for a little bit. I'm a nervous wreck and it's not helping with the insomnia and pain which keeps me up anyway. I have numerous appointments tomorrow- a consult with PT, a consult with the surgeon to have my port removed, a pelvic ultrasound to set a baseline for the tamoxifin I just started, a transthorasic echo scan of my heart to ensure no damage from the chemo and last but not least an appointment with a neurologist about this new life we call neuropathy. I'm good with the ultrasound, echo and port removal - its the PT and neurologist that are scaring me. What if they tell me they cannot do anything to help? What if the neurologist tells me this is somehow related to the MS my mother had and the chemo triggered it in me? I know the "what if's" can drive us all insane - but I need a way to stop them please..... any have any ideas? I feel like I've already fought through so much, not sure if I can keep fighting. I know I'm not alone - but I'm just lost at the moment. Thanks for letting me vent/worry/cry with all of you.
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Dawn, don't what if.. as my DH told me all the way through this - Don't worry about tomorrow because you have enough on your plate today. What happens happens and we will get through it. You will to!!! Here is a cyberhug for you!
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DawnMik, many of us have been exactly where you are, and understand the fears that invade the brain. I did a lot of studying about the stress response and the stress reaction that is the basis for mindfulness-based stress reduction, and one of the things that I realized early on is that the amygdala is the center for the "stress reaction" which recognizes all sorts of potential threats to the body, and allows the heart rate, respiratory rate, and blood pressure to go up in preparation for "fight of flight." This is an immediate primal response that protects us from immediate physical dangers. However, the cerebral cortex, where our thought and reason come from, begins to take a look at the situation and evaluate whether the threat is real or just potential, and then it allows us to get the heart rate, respiratory rate, and blood pressure back down and RESPOND to the stress in a more logical manner. When you have so many things and appointments coming at you all at once, it is very easy for the amygdala to get "hijacked" and send all kinds of stress reaction impulses all over the brain, and it also triggers memory pathways that remind you of previous threats that hurt you in some way, so the cycle accelerates. The only way I have been able to break this is to become VERY TUNED in to my thoughts, where they are going, why they are going there, questioning whether the thoughts have any bearing on reality IN THIS MOMENT. Often I find just breathing for 3 minutes in a quiet meditation will help calm myself down, "rescue my amygdala" and help me focus on the joys and beauty OF THE MOMENT, because that's all I have. Tomorrow may or may not be as bad or good as I anticipate, but for right now, this moment, I can breathe, I can appreciate the love around me, I can appreciate a spark of beauty from a bird at the feeder or the sunset over the hill.
With the drugs you have had, it sounds like you are being monitored for toxicities, and until they show up, IF they show up, please remind yourself that right now, right this moment, you are OK.
I write this today as I have been in the same fear cycle you are in right now - all the "what ifs" - not knowing any answers. I stopped my topical cream just before Christmas because I became so very ill, and am just feeling a little better yesterday and today, and noticed the tingling returning in my fingers. I wonder if it's worth getting the cream again, don't know how bad the fingers will get. Am scared because I start my second cycle of Xeloda tomorrow, which can cause hand-foot syndrome, and may be worse in someone with CIPN, so worry about that. And am dealing with the miserable LE in my dominant arm, having difficulty with sleeves both day and night because they hit the nerve at the top and back of my arm that has been painful since mastectomy. Trying to find the right balance of meds, topical meds, along with a strong sense of denial (if I ignore it, it will go away!).
And so my dear Dawn, I wish I had more to offer you, but I can offer you prayers, much lovingkindness, and wishes for finding some moments of peace and beauty today. Please let us know how you do today.
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Dawn: Holding you in our thoughts. Let us know.
Linda: Just researched Hand&Foot before I read your post. Dare I hope that what I'm experiencing is a nasty Adriamycin SE and not my CIPN getting worse? Dare I believe the neurologist that radiation doesn't usually make CIPN worse? Sounds like you're in the middle of the nightmare again. Do they think the topical cream caused your illness? Sorry about the LE too - the other SE that none of the docs believe in. Hope you can get the balance working again.
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Linda, I hope it isn't the cream. So far so good here. I started gemcitabine again yesterday after a long break and wonder if the two will interact. Going to see. I still have what they call a "boost" of 5 rads to the leftover brain mets. Once I'm off the dexamethasone I will be monitoring to see if either of those were helping.
Wishing you better days and soon.
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I don't think it is the cream as that has usually settled the tingling sensations down. I think it is the Afinitor that triggered it again by causing damage to the nailbeds, which is where I also had a lot of pain initially from the CIPN. So my thoughts now are whether it is worth the time and aggravation to use the cream to settle this down again or whether I can just tolerate it for now, and also wonder if using it would help prevent hand-foot syndrome symptoms or worsening of the CIPN from Xeloda (which is listed as a low-incidence SE).
MinusTwo, I am thinking you may be right about the nasty SE of adriamycin, which SHOULD resolve more quickly. And radiation does not damage the peripheral nerves the same as chemo does, BUT it can damage the nerves in any area that gets radiated, so there IS a possibility of radiation-induced neuropathy. Our nerves are just sort of at the mercy of so many types of injuries, and sometimes it is very tough for the specialists to sort it all out. Hoping for steady improvement for you!
Chickadee, hang in there, baby! You have come so far, I'm hoping you are on the home stretch and get some overall improvement soon!
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just the mention of Afinitor gives me the willies. Hated that stuff.
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Chickaee, you gave me a little giggle! I honestly cannot tell where one side effect starts and another ends, I have felt so bad since my first chemo in 2010. I never got energy back, had the CIPN, then had progression after progression after progression. But I will have to say that after being off the Afinitor and letrozole for 3 weeks, my overall body joints and pains have improved significantly, and the fingernail issues and finger pain has improved. Still have the fatigue. Never had major GI issues with the Afinitor, but MO warned me about Xeloda may have diarrhea. In any case, I have a whole drawer full of GI meds for nausea (4 different meds!!!), constipation (2 different meds) and diarrhea (just Imodium). Just starting cycle 2 of Xeloda, wary of SEs, hoping it does its job, hoping I can handle it, hoping it doesn't make my hands and fingers worse. Am supposed to take Ca and Vit D, have read that various B vitamins can help, have decided to ditch them all because I am just SICK of taking pills and they make me more queasy (and the L-glutamine that I used during initial chemo did not prevent CIPN, but who knows if it may have made it less severe than it otherwise might have been?), so am trying to just get those nutrients through whole foods, green smoothies, etc. Will probably add a bunch of skin stuff to the drawer if needed.
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Xeloda scared me but it gave me a year of stable after Afinitor tried to kill me. Seriously, I was one of the first to get it and it damaged my lungs. Fortunately I'm not coughing anymore. Justjudie had to get off it too. Hers gots so bad she was on oxygen. Afinitor not Xeloda, don't want to scare you.
At least with Xeloda I could work, once it became infusions I had to give it up because I traveled.
I just ordered me a cool little scooter for the spring. We live just off a lovely trail with sidewalk and I'll be damned if I'm going to be stuck with short walks to the mailbox. I want to enjoy the outdoors more again.
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Hello my friends,
Thanks to all of you for your cyberhugs, and words of wisdom and advice. I took a day to let everything sink in. Wednesday was a big day and it hit me harder than I thought. On the upside - I have gotten the ok from my onc to have my power port removed! She advised me that I am cancer free and she will be monitoring me closely however at this point no future treatments are planned. Met with the surgeon and he will remove the port next Friday. Also had a pelvic ultrasound as a baseline for for the tamoxifin..... tech advised me there was nothing to worry about everything looked good- Yay! The echo on my heart also showed no damage from the chemo - another yay! The physical therapy eval just told me what I already knew - can't feel my feet/legs to my knees and now the inner part of my thighs, and my hands are numb to my wrists. She will work to show me ways to "sense"what I cannot feel to make it safer for me to get around. She will also look at maybe a walker with wheels as opposed to the cane I currently use. We begin next week. And the biggest appointment was with the neurologist. He is amazing (I knew him previously as my mothers neurologist - he treated her MS). He did all the usual tests...unfortunately the effects of this CIPN is more serious than I would let myself think about. I have no reflects from the knees down and from my hands to my elbows. He stressed the need to watch for cuts/injuries as I can't feel them. He also warned about frostbite.... something that I hadn't even thought of. He told me that he wanted to increase my Gabapentin from 1200 mg per day to 2400 mg. He also is scheduling me for an EMG to see the extent of the nerve damage. He warned thatI will never be free of this CIPN however he is hopeful that he will be able to find a medicine combination that will control the pain etc. I will see him again next week. When I asked if I would ever be able to drive again he advised that he could make no promises but he was hopeful that I would some day. I have to be patient -lol. Where have we all heard that before? So I am trying to stay in denial
and will work on my one day at a time... I thank all of you for your kindness and support. You are all in my prayers. On a side note - what type of shoes do you ladies favor? Looking for something for stability and warmth that doesn't weigh a ton.
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DawnMik - Good luck w/all your appointments. I go for a gait & balance assessment next week & supposedly will start PT after that. This place is specifically for neuropathy problems but it sounds like they won't take my secondary insurance - AARP/United Health Care. We'll see.
As for shoes - I really liked my Sperry Docksiders until my toenails started lifting from Taxotere. Now I usually just slip into Easy Spirit TravelTimes. Probably not the safest but I can't tie the laces on tennis shoes.
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Hi DawnMik,
I'm glad you got through that very long day and have a neurologist you like and trust. It can be hard to find specialists who really get your issues, are easy to talk to, and reasonably compassionate. These are tough problems to live with, and fighting to make yourself heard/understood by your doctor shouldn't be part of the struggle.
I see you're in the Worcester area. I'm meeting with a physiatrist next week at UMass Medical to see if she can offer something new to help me deal with my neuropathy. My oncologist at Dana Farber referred me to her. I'll let you know how the appointment goes. I'm not sure what a physiatrist offers that a PT doesn't, but she specializes in cancer rehab and I'm hoping that will make a difference. (I saw a PT after I had knee replacement surgery, and she didn't have much to offer for the neuropathy.)
In any case, good luck. I hope you're feeling some relief after your appointments. Congratulations on getting your port out!
Ann
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I forgot about the shoes! I spend most of the day (I work from home, and I have no idea what I'd do if I were still going into an office every day) in New Balance WR 840's--not because I expect to run, but because they're a super-cushioning shoe and give me great stability. My knees feel better immediately when I put them on. I have three pairs against the day they'll discontinue them.
At night and during the summer, I wear Finn Comfort sandals. They're pricey (over $200/pr), but are the most comfortable and supportive sandals I can find. They have removable cork footbeds that I sometimes put in other shoes because the support and cushioning are so good.
You might think about seeing a podiatrist for custom orthotics. These can get really expensive, but may give you the best option in terms of support and cushioning. (Support may not be an issue for you; I have arthritis in my knees, so I need help there, but if your other joints are good, cushioning may be all you need.)
Good luck!
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Thank you Minustwo and Ann for your responses. Minustwo good luck with your gait and balance assessment. Hopefully they will find something to help you! Ann good luck with the physiatrist- I've never heard of it but hopefully it will be of help. Please let me know how it goes. UMass has lots of wonderful doctors. And thanks to both of you for the shoe recommendations! I will begin looking for something soon and will start with your ideas.
The increase in gabapentin is making me extremely tired but I will stick with it in the hopes that it will make a difference. Still haven't noticed any changes taking the cymbalta. Thank you all for being so wonderful!
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Does anyone have involuntary "twitches" or "spasms" all over their body?
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DawnMik - another shoe reference is SAS. I think they all have a big toe box. Hope you're not looking for pretty though. And they sell great inserts at REI (the hiking & outdoor store), but as SeptemberSong says, they're not cheap.
ChickaD - sorry, not me. Hope someone else can provide some experience.
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Since I got off the gabapentin I have been having twitches all over and now weird nerve sensations in very private spots. Not sure what to do?
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GmaF, did you taper slowly off the gabapentin? I had problems with withdrawal symptoms after several medications, and I think that was one of them. The worst was venlafaxine. You should talk with your doc because you may need to taper more slowly. Best wishes.
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It is NOT recommended that you just stop taking gabapentin or any drug like it (lyrica, etc.).Those medications need to be tapered off. When stopping medications it is ALWAYS best to discuss this with the prescribing doctor.
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at this point i'm off after 2 month taper.
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