Taxol Toes: Coping with Peripheral Neuropathy

I had Taxol every three weeks, which was the standard method of treatment eleven years ago when I was in treatment.  I am one of the few people I know whose neuropathy started well after treatment was over.  As your doctor points out, it usually shows up earlier, and in many cases goes away on its own in a couple of months.  I think it would be worth asking the doctor if B vitamins would be OK with the treatment you are on.  They might help prevent the problem.

I've already asked the doctor about Vitamin B and he doesn't think it will do any good. I'm taking them anyway since many women report that it helps. It's abit of a Catch-22 really, isn't it? If they work, it means I won't get any neuropathy (or only in a minor way) and we won't know if it was the vitamins or not.... Since they won't do any harm, it's worth a try.

Best wishes

Sue

Jolie, although my neuropathy has never improved significantly, my chemo brain has gotten better.  For a while I couldn't dial a phone number without referring to the phone book three times, even for numbers I used frequently.  I think playing solitaire and similar games helped me learn to focus and sequence again.  Or maybe I would have gotten better anyway; it's hard to say for sure.  I'm to the point now where I can't tell if my memory lapses are from old age or chemo!

So I hope you gradually see some improvement.  It took about five years for me.

Bernadette, I don't know if what people see on each page varies depending on the size of their computer screen.  On my computer, the "page 2" link is working and contains a short paragraph with my conclusion that even with the neuropathy, I'm grateful to Taxol because I believe it saved my life.

Bernadette, thanks for reporting the formatting error. I think we've fixed the glitch. Let us know if it's not better.

Sarah

I have been out of treatment for 2 yrs & took Taxol (after 4 treatments or AC)for 4 wks until I got severe diarhea and nausea causing severe dehydration & changed to Taxotere for 7wks along with wkly doses of herceptin until my lungs got damaged and blood oxygen dropped to 75% then just did herceptin e/3 wks. Anyway I got servere neuropathy after 2nd Taxol treatment in both feet and hands I tried Cymbalta but no supplements excent multi vitamin and nothing helped I still have it and still no better along with breathing difficulties and other chemo side effects.  The neuropathy is the worst as I trip easily (no feeling)and am currently recovering from knee arthoscopy & torn tendon/badly sprained wrist.  Which unfortunately I feel all to well.  Sometimes I wonder if I took too agreesive treatments as margins were clear and only micro cells in one sentinel node.  Oh well it's best not to look back and just be happy we are still here to continue the fight and celebrate with family and friends.  God Bless.

Ash26, I'm sure it is harder to accept a side effect like neuropathy if it might have been a stronger treatment than you needed.  I didn't have that issue because my cancer was so aggressive.  Taxol was added to my treatment plan after we learned that I had 16 positive lymph nodes, so I tend to think that without every drop of chemo I had and every blast from that radiation machine, I would be dead.  But who can know for sure?  You're right that it's better not to second guess.  You made the best treatment decisions you could at the time with the information you had, and now you need to keep looking forward.  If you are interested in exploring other possible treatments, I'd suggest consulting a neurologist.  That's the kind of doctor who will be most up to date on the best treatments for you.

It's really hard not to second-guess yourself.  I did that for quite some time, but now am on to hobbies and activities that take the focus off my treatment decisions.  Every day I am thankful to be alive, and look at the neuropathy and lymphedema as scars from a battle that made me all the stronger and more compassionate.

Jan, it may be that the vitamins and glucosamine helped reduce the severity of your neuropathy.  That's one of the questions that no one can know for sure.  It is amazing what we can learn to "tune out."  The main time I notice my tingling is at night when I'm falling asleep and don't have other things happening to distract me.   

Phyllis, you may be right about the vitamins and glucosamine reducing the severity.  I like to think that is what happened, and maybe it did.  It is truly amazing what our brains can tune out, what becomes background noise in our new normal state.

Thanks for sharing your experience about Lyrica.  I think it will be helpful for some people who didn't get relief from Neurontin or who had too many side effects.  It's funny how differently people react to drugs, so having another option is wonderful.  I'm glad it's working well for you.

Thanks for your honesty.  This site is useless if people don't share the bad as well as the good.  I also had aching bones like the flu for a couple of days after the administration of the Taxol.  I think some aching is extremely common.  We had planned my treatments for Fridays, so that I could feel bad on the weekend and be back at work on Monday.  Unfortunately, the aching started about 48 hours after the treatment on Sunday, and I still felt bad when I went to work on Monday and Tuesday.  But clearly my level of pain wasn't as severe as yours.  Tylenol helped, but didn't work entirely.

The neuropathy developed after I finished Taxol, and pain killers don't touch it, don't help a bit.

I have heard that a newer cousin of Taxol, Abraxane, is much better about not causing side effects.  I don't know if that would have been an option for you, but it is worth asking about if your doctor ever thinks you need more chemo in that family.

I just finished my Taxol at the end of Sept.  My treatment was to get it one a week 3 weeks in a row and then a week off.  I was told to expect it to take about 48 hrs to hit, so I planned my treatment on Weds and then had my down time on the weekend.  That way, I was able to continue to work full time.

My downtime initially consisted of feeling kinda fluish and achy joints.   The aches improved some what but by the time I had my 11th treatment, there really weren't any good days.  There were just less bad days. 

About 4 weeks post the last chemo, I am feeling much better.  Unfortunately I do have the neuropathy which started after my 10th treatment.   For several weeks after the last chemo, it seemed to be the same, but for the past few days, I have noticed it seems to be getting worse...  Not what I expected.    I thought that once I finished treatment, that things would steadily improve.

Apparently chemo is the gift that keeps on giving.... finger nails are getting lose too.  Insult to injury!  

But of course, as many have said, if this buys me time, then it is worth it.  When I was originally dignosed 4.5 yrs ago, I was already stage 4 with bone mets.   I am interested in both quantity and quality, so next time they come around with the chemo bag, going to have to take a long hard look at whether the time lost on chemo is worth the time gained....

Four and half years after a Stage IV diagnosis seems like a worthwhile trade for treatment side effects.  I hope this round of Taxol gives you twice that!  I would suggest that you talk to your doctor about the worsening neuropathy.  I think quick intervention on it is more likely to be successful.  If your oncologist doesn't have ideas about interventions like vitamins, anti-depressants, or anti-seizure medicines, consider talking to a neurologist whose specialty is nerve issues.  (Anti-depressants for neuropathy aren't to keep you from being depressed over your condition.  Some of them can actually help ease the pain.)  I hope that you soon find some relief for this problem.  The loose nails thing is a different issue, and that should get better, but let your doctor know about it.

Ginny.

I too, have terrible bone pain since taking taxol for breast cancer.  I cried day after day but fortunately found a neurologist that understood my pain.  I now take serious medication 3 times a day to ease the pain and it has brought some quality of life back to me.  My neuropathy is in elbows to fingers and knees to toes, almost any use of the limbs increases the pain.  My cognitive function has been greatly affected also.  I knew at my 2nd chemo session that something was seriously wrong but my oncologist never mentiond that taxol could be the problem until an MRI of the brain showed the damage.  I did not take any more taxol after that but only had 2 treatments remaining,to late!  I have been led to believe that this has only happened to me, which I found very hard to believe.  Do you have to deal with the medical profession acting as if you are exagerating or making it up?  I am unhappy to hear that you are going through this but to know that Taxol does cause these problems and that I was correct in my suspisions.

Your pain sounds more extensive than most people's.  I think it is usually more in the toes and fingers.  Mine does spread into my hands, feet, and ankles sometimes, so I'm sure that people's experience varies.  You say you have bone pain.  That is different from neuropathy, which is nerve pain.  If you also have nerve pain, I don't understand why the doctors are acting like they haven't heard of this.  Neuropathy is a well-known side effect Taxol.  Of course, not everyone gets it, and some people only have it for a short while.  There has also been quite a bit of research done on the cognitive effects of chemotherapy.  Keep in mind that the medication that is relieving your pain could also be part of the cognitive problem.  In fact, I stopped taking one pain medication because the mental side effects were so extreme.  I'm glad you found a neurologist who can help you with the pain.

Thank you for responding.  I am almost at the 5 year mark and am thankful for that.  My neurologist did test and confirmed that the problem with my legs and arms is neuropathy. I experience the numbness, tingling, burning and a throbbing pain that feels like it is radiating from my bones but nothing has been found to be wrong with the bones.  Anyone else out there experienced problems with limbs from the Taxol treatment?  My neurologist has recently increased the pain medication and if I do OK with that he is going to prescribe Lyrica.  I am hopeful that will help and decrease the need for some pain medication.

I know some people who have tried Lyrica and found it useful.  It's a newer drug in the same family as Neurontin, which is an old standby for neuropathy pain.  I hope your doctor can find something to get your pain under control.

Johanna, as an IBC survivor, I understand why your doctors wanted to go with the dose dense scheduling.  They weren't doing that back in 1998, when I was in treatment.  In fact, because of my IBC, I was in the first batch of breast cancer patients getting Taxol for Stage IIIB treatment.  It's a good drug that works differently than the ones in the Cytoxan/Adriamycin families, so it's an important part of treatment.  Did your doctors mention trying Abraxane?  I hear that it has the benefits of Taxol and Taxotere without some of the side effects?  IBC patients tend to go with the "big hammer" theory--hit it as hard as possible and hope to live long enough to complain about your sore thumb later!  The quality of life issues are important too, especially now that more of us are actually living past the two or three years that was a typical prognosis in the 1990's.

Hi Phyllis,

Yes, I am just thankful to be alive and my doctor is doing the best she can to avoid a recurrance. I'm thankful that the IBC survival rate has increased as well. When I was first diagnosed, all I heard about IBC was that it was aggressive and the survival rate is lower than just breast cancer.

There was another drug the doctor mentioned that she could give me and I can't remember the name. It could have been the one you mentioned. She did say that it can cause Neurapathy also but not as severe. After my surgery, she consulted with her collegues and they all agreed  that I could benefit from Zeloda, even though it is usually used for stage 4 breast cancer. She was afraid the insurance wouldn't cover it, but they did. Hopefully it will do the trick, along with radiation, and kill any remaining cancer cells.

thanks, Johanna

Dianne, I don't know anything over the counter that would have a quick effect.  I assume you have tried Tylenol and other pain relievers.  When I tried them, I didn't notice any difference at all.  Some people find relief from vitamin B, but that doesn't work immediately, and you would need to discuss any vitamin supplements with your doctor anyway to make sure they won't interfere with any other medications you take.  I have found that my neuropathy is worse if my hands and feet get cold, so you might want to make sure that you are wearing warm socks and maybe even gloves.  Some people get a little temporary relief from rubbing the affected areas, so you might try massaging your hands and feet with some lotion.  Once you see the doctor, you may find immediate relief with some of the medications usually prescribed for neuropathy, but if the first treatment you try doesn't work after a reasonable period of time, be persistent in trying other tactics.  People vary in their response to drugs.

Thank you so much for responding. I have contacted my doctor and will see her Monday. I will be trying everything until I find something that works. I already take a vitamin but I may need some extra B vitamin. I will keep in touch, Dianne

Robin, I never found anything topical that helped for very long, but everyone is different.  I can get some temporary relief just from massaging with a mild lotion.  I think the relief is probably related as much to getting the blood circulating with the massage as from the cream itself.

 I have heard people praise Udder Cream and similar products for problems with hands and feet during chemo.  You might look at some of the topicals designed for sore muscles, but I don't know if you would want to apply those if your skin is already irritated.  My Taxol pain is nerve pain, more than skin pain.  This is worth taking up with your doctor to make sure that anything you use won't create new problems.  Let us know if you find anything that helps.

Thanks for the reply! So far only cold water gives me any relief. I have tried so many topicals and they seem to generally make my feet and skin feel like they are sufficating. It is really wierd as it has almost the opposite effect. They are worse at night and really keep me awake. The dry crispy hot skin is the issue, but I may well be confusing that with just the real neural issues and just keep trying to fix the topical skin. Warm weather is worse. Winter time I can only wear slip on shoes, fairly loose with light or no socks. In the spring and summer I wear sandals all the time, and only slip ons, nothing complicated and certaintly nothing between the toes, etc. My feet want alot of texture, like rubbing on uneven or rough surfaces. I will try some more extensive massaging and see if that actually helps by getting a better blood supply. Thank you, Robin

Robin, I think you may have two things going on.  Taxol can irritate the skin and nails.  I thought that most people started to heal from that once chemo was over.  Have you talked to a dermatologist?  You may have some kind of secondary skin infection that got started when your immunity was low while on chemo.  Peripheral neuropathy is damage to the nerves in the hands and/or feet that makes them tingle or burn like they are asleep.  Peripheral neuropathy sometimes gets better after chemo, and sometimes is permanent.  I found that my oncologists were so focused on saving my life that they didn't have the expertise to spend a lot of time working with me on the chemo side effects.  Medicine is so specialized these days that no one can be up on the research and best treatments for everything.  If your current doctors haven't been able to help you find solutions to your pain, then try to find another doctor who has an interest in skin issues or pain management.  Of course, hang on to the oncologist too.  

Thanks for the information.  I wonder if that is similar to the glucosamine that Jan's doctor recommended.  The neurologist I saw put me on a blend of B and E vitamins.  I echo your reminder not to take any supplement without clearing it with the doctor first.  Some supplements can interfere with other medications.  I'll be seeing my oncologist next month for the my annual check-up.  I'll ask about the supplement you mention.