How much neuropathy is tolerable?

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oldbeauty
oldbeauty Member Posts: 368 Member

For those undergoing or who underwent chemo treatment with agents that list neuropathy as a possible or likely side effect, I am curious how extensive was the effect you experienced.  Also, did it cause you to withdraw from treatment with that agent or did you persevere?  If you continued, what has been the permanent damage that you tolerated as the price to be paid for treatment?  For me, I started out on 12/22/2016 with Carboplatin and Taxol for a scheduled six rounds.  However, because my liver enzyme counts elevated considerably, I got only one round of the two together; next I got Carboplatin only and for the next 2 sessions I got Taxol only.  I had an allergic reaction at my last sesssion, which my doctor ascribed to the suspension fluid and not the Taxol.  My next session is this week.  I don't know yet what agents I will get.  My usual experience is that on the 3rd and 4th days after infusion I get definite joint ache in my ankles, knees, hips, and, most recently, elbows.  This then goes away by the 5th day.  Early on and continuing to date I have numbness of the last 3 toes on my right foot, as well as the pad of my foot below these toes.  This is annoying but not disabling.  I have not fallen nor do I feel unbalanced while walking or climbing.  My main concern is with my hands.  At first, it was tingling/numbness of all of my fingertips on both hands.  For the past two weeks at least, I have a feeling of swelling of the fingers and stiffness in all of the 3 joints of the fingers (knuckle and middle joint and fingertip joint).  It is worse overnight. When I awake in the night, it is difficult to bend my fingers into a fist.  On my left hand, sometimes at night I cannot hold a fist and my fingers snap back upright.  Once I get going in the daytime these symptoms subside but I am always aware of a sense of swelling and stiffness and numbness of the fingertips.  If these are permanent, I would not describe them as disabling but it does worry me how much worse it could get with further treatment.  Already, I feel a deficit of strength and dexterity; but again, not now disabling.

I'd be interested in hearing of others' experiences.  Thank you for any feed back.

Oldbeauty

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  • Soup52
    Soup52 Member Posts: 908 Member
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    I had 6 rounds of carboplatin

    I had 6 rounds of carboplatin and taxol. While neuropathy didn't set in immediatel, I still have it mainly in my feet. Since my last treatment was in June of 2016, I feel my neuropathy will remain. I did try gaboplatin for a while but it really didn't help, so I stopped it. I don't find mine is really debilitating either. I know it is there, but it's not really painful just a bit annoying. I'm sure others will chime in when they see your post.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
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    Neuropathy You

    I had 14 weeks of taxol/carbo. I got acupuncture which I am convinced limited the neuropathy. My last chemo was 8/16 and I still have some neuropathy in both my feet in my toes (numbness) and it's not too bad. I hope it goes away. I have terrible problems with my hands but that is most likely due to arthritis. I don't think it's neropathy. 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited March 2017 #4
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    Nueropathy

    Mine did not start until about six weeks after I finished frontline treatment.  Mostly my feet and at night.  I had a recurrence and new chemo center.  I was offered ice booties and mittens to help with the nueropath.  My Oncologist also lowered the amount of Taxol I was receiving.  He doesn't think mine will ever go away because by now I have had many rounds of Taxol.  Gabapentin does help me some.  I also use Lorazapam along with the Gabapenti. For some reason it works.  Some pepple have had luck with B 12.

    hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Hi Oldbeauty,

    Keep talking to your Dr. about how bad it is getting because treatments are cumulative.  Mine got very concerned by the end and by 5th & 6th treatment she lowered the dose and extended the amount of treatment time because she was concerned it would become permanent and worsen.

    I think that may have helped as I don't think it got too much worse and I ended Sept. 2016.  I also had acupuncture before and after each treatment and take supplements which do include B12 as well as glucosamine.

    Some days are worse than others but for the most part it's just annoying and kind of numb like you describe and mostly on my right foot.  (((HUGS)))

  • oldbeauty
    oldbeauty Member Posts: 368 Member
    edited March 2017 #6
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    Thanks for all the feed back, ladies.

    It's interesting to see the ranges of effects.  As for treatments, at first the onco nurse told me to take 100 mg of B-6.  About a month later she said they were no longer recommending it because of an article that talked about the toxicity of B-6 at certain levels causing neuropathy.  I read maybe the same article that said doses not exceeding 100 mg per day were OK.  I kind of wish I'd kept up with it bc I think it might have been helping.  I will bring it up at tomorrow's appointment and ask about gabaplatin and acupuncture.  It looks to me like everyone's neuropathy was tolerable to them given the alternative of giving up treatment. Thanks for sharing your stories.  Oldbeauty

  • beccabtown
    beccabtown Member Posts: 234
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    Hello Oldbeauty, I hope you

    Hello Oldbeauty, I hope you get some answers and some relief.

    My problems with neuropathy have been almost entirely post-treatment. (I don't understand how that works, unless it's just that you hit a certain level of toxicity with six infusions.) During treatment I had about a week of pain after each of my six infusions of Carbo/Taxol, sometimes numbness in my feet or hands. Since it went away each time, I thought I was doing well. My oncologist always asked about it and was especially concerned about any neuropathy in my hands since my livelihood depends on using a computer. I would not have wanted her to reduce the dosage of the chemo drugs.

    After my last infusion, which was in December, I had several weeks of leg and foot pain that was much worse than what I had after other treatments. That turned into neuropathy like what you describe: a feeling of swelling on the soles of my feet, which to me is very unpleasant; extreme sensitivity to touch on the soles and tops of my feet; and occasional shooting pains in my feet. I've also had weakness in my legs and am quite wobbly--I walk with a cane everywhere and have fallen a few times. I'm taking gabapentin, 600 mg/day; I think that helps with the pain, although it doesn't eliminate it. Swelling and leg weakness are side effects of the gabapentin, so I can't tell whether these are due to the neuropathy or the medication. I'm also taking B6 and B12, and just went back to taking Claritin every day (I stopped it for several weeks when I started taking gabapentin).

    I basically consider myself disabled right now and only hope that it is temporary. I didn't expect to be in this situation after treatment. I don't feel my oncologist has been very concerned about these effects. Maybe she's right that we just need to wait a few more months to see whether things are going to improve. I have been wondering whether I should see a neurologist.

    Please do let us know what you find out at your appointment.

  • Beebster
    Beebster Member Posts: 20
    edited March 2017 #8
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    Neuropathy Experience

    My frontline treatment consisted of six cycles of paclitaxel and carboplatin. Neuropathy in my toes and the balls of my feet set in almost immediately with my first treatment. It did not seem to progress beyond that for the rest of the treatments (from December 2015 through April 2016). I also experienced some slight neuropathy in my fingers. Mostly my hands were cold. I ended up using fingerless gloves at work to manage the keyboard! My secondline treatment for a pelvic recurrence and mets to my liver has me on doxirubicin liposomal and carboplatin (started in December 2016). Since my original neuropathy never went away, I was wondering whether it would get worse this time. So far, it hasn't. I don't find it disabling, I continue to work out - speed-walking with a modest amount of jogging on my treadmill (thank goodness spring is almost here). I only really notice it at night, when I first climb into bed. My feet have the "gone to sleep" tingling for a few minutes, then it subsides. It doesn't keep me awake. I feel fortunate in that these types of side effects have been minimal for me.

    Beebster

  • janaes
    janaes Member Posts: 799 Member
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    I had the same feeling you

    I had the same feeling you are having in that you worry that it might get worse.  After my third treatment my nuropathy had reached the ball of my foot.  I talked to my doctor about it and he chanced my toxal to toxatere for th last three threatments.  It didnt get worse and I am glad. I did have to put up with being sick the last three treatments but I knew that would end.  Im glad my neuropathy isnt worse than it is.  I do feel my neuropathy is a little better but it is still in the ball of my foot.  Its been a bit more than 4 months since treatment.

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Hello Oldbeauty, I hope you

    Hello Oldbeauty, I hope you get some answers and some relief.

    My problems with neuropathy have been almost entirely post-treatment. (I don't understand how that works, unless it's just that you hit a certain level of toxicity with six infusions.) During treatment I had about a week of pain after each of my six infusions of Carbo/Taxol, sometimes numbness in my feet or hands. Since it went away each time, I thought I was doing well. My oncologist always asked about it and was especially concerned about any neuropathy in my hands since my livelihood depends on using a computer. I would not have wanted her to reduce the dosage of the chemo drugs.

    After my last infusion, which was in December, I had several weeks of leg and foot pain that was much worse than what I had after other treatments. That turned into neuropathy like what you describe: a feeling of swelling on the soles of my feet, which to me is very unpleasant; extreme sensitivity to touch on the soles and tops of my feet; and occasional shooting pains in my feet. I've also had weakness in my legs and am quite wobbly--I walk with a cane everywhere and have fallen a few times. I'm taking gabapentin, 600 mg/day; I think that helps with the pain, although it doesn't eliminate it. Swelling and leg weakness are side effects of the gabapentin, so I can't tell whether these are due to the neuropathy or the medication. I'm also taking B6 and B12, and just went back to taking Claritin every day (I stopped it for several weeks when I started taking gabapentin).

    I basically consider myself disabled right now and only hope that it is temporary. I didn't expect to be in this situation after treatment. I don't feel my oncologist has been very concerned about these effects. Maybe she's right that we just need to wait a few more months to see whether things are going to improve. I have been wondering whether I should see a neurologist.

    Please do let us know what you find out at your appointment.

    Sorry

    Sorry to hear that you are suffering so.  I think feet and/or hand effects have to be equally bad bc they are so fundamental to independence.  I am grateful to say I don't yet feel I am disabled, just concerned.  I will post whatever I may learn from the doctor. Oldbeauty

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Symptoms in Hands

    Turns out my hand symptoms are fluid retention from the hydrocortisone I am on.  That's a relief (I guess).  The foot symptoms are classic neuropathy and they are tolerable. Oldbeauty

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Well, that's good news right?

    Are they able to give you anything to help with that?  You can eat things that help push fluid.  Keep us posted.  (((HUGS)))

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Nellasing said:

    Well, that's good news right?

    Are they able to give you anything to help with that?  You can eat things that help push fluid.  Keep us posted.  (((HUGS)))

    I will follow diet hints

    The oncology nurse says they don't like to give diuretics bc they mess with your electrolytes and I've already got enough going on with the chemotherapy.  Today, I'm going to see an ophthalmologist because of swelling around my eyes. Oncologist said he couldn't comment other than to say he notices other steroidal effects like " moon face".  I want to be sure my actual eyeballs are in good shape and no glaucoma symptoms.  Thanks for asking.  Oldbeauty

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,386 Member
    edited March 2017 #14
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    oldbeauty, I had the aches in

    oldbeauty, I had the aches in my hips and knees after the chemo which went away after a few days and was one of the fortunate (and I realize how lucky I really am) never to have developed neoropathy.  

    I have said it before and will say it again:  no one has a clue what you go through and are left with from the treatments.

    Hugs to all you ladies.  

  • AmyByTheSea
    AmyByTheSea Member Posts: 6
    edited March 2017 #15
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    Also living with neuropathy....

    I, too, have been living with neuropathy.  Mine started with my second rounds of chemo.  (I had the 'sandwich' treatment:  rounds of chemo followed by radiation [external and internal] and more rounds of chemo).  My Oncologist said I was lucky that my neuropathy didn't start until the second rounds of chemo because it meant it was more likely to not be permanent.  So far, it's been a daily struggle that at times could be very debilitating.  I did find a product that helps the symptoms.  It's called Neurvasia.  It's a 'medical food'.... it's basically a combo of several different supplements.  I've managed a physician's group for the past 16 years and it's a product that our doctors have recommended to our patients suffering from neuropathy.  I've long heard patients rave about how it helped them.  I didn't know that one day I would be a member of the group that would need it.  It mostly helps with the really bad pins and needles that I would feel at night.  Of course, I still feel the effects of the neuropathy daily and I find myself making sure to walk close to walls or fences, etc, something that I could reach out to if I started to feel unsteady on my feet--- just to give me a sense of stability.

    Sure hope you feel better soon. 

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Thanks

    Amy, thanks for the product info. I was skeptical about the hand thing being from steroids.  The eye doc checked me out and there is no swelling in my eyeballs.  He said corticosteroids that I'm taking now are quite different from the steroidal progesterone I used to take and they are nasty if necessary.  I think this latest problem with my hands is most likely due to Decadron that they gave me on March 2 to overcome an allergic reaction I had in treatment that day.  I got it again yesterday as a preventative measure.  All this with the hands and the swelling of my eyelids and now the moon face all started a week after the Decadron dose.  I take 15 mg of hydrocortisone daily bc of adrenal suppression so I guess it all adds up.  I can live with the numbness in my toes and fingers.  Eventually, I hope to get off the steroids and lose the other symptoms.  Oldbeauty

  • Kinableu
    Kinableu Member Posts: 14 Member
    edited March 2017 #17
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    I started chemo with Taxol

    It is hard to sort out what treatment is causing each side effect.

    I started chemo with Taxol/Carboplatin just recently and have a week to go before my second treatment. I am doing the "sandwich" routine with intravaginal brachytherapy as well, 6 or 8 cycles of chemo and total of 3 of brachytherapy.

    The brachytherapy came first and I was fine until day 6 hen I got very tired, A chemo session followed on the following week, and the fun began LOL

    I have neuropathy in my body from the hip down. My feet feel like there is thick felt on their soles,  I accidentally cut my foot and did not even feel it Frown

    I alo have a light but annoying tinglingnumbness on my right side esp. the arm and side of my face. I feel sort of "spaey" and of course, tired, so I haven't been back at work for a week.

    No nausea, but before chemo I was prescribed the steroid Dexamethasol with instructions to taper it off. it did seem to prevent stomach issues. And no hair loss yet (I was told it would be coming at about the two week point after chemo bus so far so good). 

    Constipation and all that... they gave me three to  try: miralax, senna and the orange one in the capsule. They all work differently. so depends on what your problem is. I did well with miralax but i had to cut the amount down a little.

    I also allowed myself to get dehydrated.... too much sleep and forgetting to sp water. I had to be rehydrated (needle in arm, saline drip). I now drink 1 liter water plus 3-4 cups green tea (I hate water) and other beverages each day.

    The side effects are hard to predict, everyday something else. Yesterday I broke out in hives. I am taking the antihistamine Benadryl for that, It helps but it isn't  that long-lasting. I have very dry tight skin and a rash in the general treatment area.

    Managing all these weird things is not easy even if they are not "serious" or life threatening they do impact on your quality of life. My advice is to invest in some lovely new beding, buy a big water bottle, get an iPad and an iPad stand for it so you can read easily in bed, and get used to letting a lot of peripheral things in your life "go" (like doing laundry regularly, making food for other people, etc.) Cool

     Good luck everyone

    kinable

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited March 2017 #18
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    Kinableu, That is very

    Kinableu, That is very concerning to have the neuropathy hit you that hard.  Please talk to your doctor about it. You may need to switch to

    Taxotera (SP) instead of the Taxol.  Many (most) do get some neuropathy but yours sounds extreme.  That darn fatigue was the hardest for me to deal with.  Some days it was hard to get myself out of bed! And you are right.... things just don't need to get done. Your rest and healing is most important.

    Take care and I hope things get a bit easier for you.

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited March 2017 #19
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    Nueropathy

    I do agree that you should mention the severity of your neuropathY.  Your oncologist can do something to help.  If not change Taxol to something else or at least lower the dosage.  My cancer center had ice booties and mitten to wear while I was getting the Taxol.  That helped mine from getting any worse.  

    I slather Avon Skin So Soft bath oil  all over after I take my shower and it has kept my skin from getting dry.  I think that baby oil would probably work just as well.

    i am sorry that you have so many side effects going on.  Even though by them selves that may not seem that bad, but when there are so many, it gets hard.  Hang in there, you can do this.  Also. Biogenesis mouth wash helps keep your mouth from getting dry and keeps away mouth sores.  Watermelon, cantaloup, soup and smoothies help with hydratio.

    Hugs and prayers, Lou Ann

  • pgdaughter
    pgdaughter Member Posts: 22
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    Icing.. the "diy" way

    My mother is also on Taxol. Since ice booties and gloves are accessible where we live, we have resorted to covering her hands and feet in plastic bags and dipping them in basins of water made cold with blue ice packs. Depending on how long your infusion is, you may have to change the ice packs to keep the water cold. From what I understand, optimally the water should be cold enough so that the skin temperature of the patient's palm is around 18 degrees Celcius (circa 64 fahrenheit). It's a feat not easy to achieve, and you will need one person or a kind nurse to assist. We believe it has helped her so far.  

  • beccabtown
    beccabtown Member Posts: 234
    edited March 2017 #21
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    Also living with neuropathy....

    I, too, have been living with neuropathy.  Mine started with my second rounds of chemo.  (I had the 'sandwich' treatment:  rounds of chemo followed by radiation [external and internal] and more rounds of chemo).  My Oncologist said I was lucky that my neuropathy didn't start until the second rounds of chemo because it meant it was more likely to not be permanent.  So far, it's been a daily struggle that at times could be very debilitating.  I did find a product that helps the symptoms.  It's called Neurvasia.  It's a 'medical food'.... it's basically a combo of several different supplements.  I've managed a physician's group for the past 16 years and it's a product that our doctors have recommended to our patients suffering from neuropathy.  I've long heard patients rave about how it helped them.  I didn't know that one day I would be a member of the group that would need it.  It mostly helps with the really bad pins and needles that I would feel at night.  Of course, I still feel the effects of the neuropathy daily and I find myself making sure to walk close to walls or fences, etc, something that I could reach out to if I started to feel unsteady on my feet--- just to give me a sense of stability.

    Sure hope you feel better soon. 

    Neurvasia?

    Sorry to hear you're dealing with neuropathy, too. Can you tell me more about Neurvasia? I googled it after reading your post. It seems to be a nonprescription item that is sold by/through doctors. Is that right? Thanks.