Long-term side effects of chemo with Taxol

By Judith Rosenthal Schwartz Thursday, August 21, 2008

- A
- A
- A

For the last year-and-a-half I've been really suffering with painful feet. Now I'm not the sort of person to run to the doctor every time I sneeze, so I tried to figure it out myself. I tried orthotic-like supports: nothing. I tried 800 mg. of ibuprofen: nothing.

In April I took my son on a college road trip to Johns Hopkins, Princeton and MIT. It was excruciating for both of us - he wanted to walk quickly to everything, not miss a thing (who could blame him) and I was in constant pain, barely able to walk a few blocks.

Not to mention that I used to walk 15 miles a week and take a weekly yoga class. Without the ability to exercise my weight balloooned.

At that same son's insistence, I took myself to my internist. She asked some questions and then told me that I have permanent peripheral neuropathy. Translation: I will always have numbness and pain in my feet. A permanent side effect from Taxol.

She prescribed Gabapentin (also known as Neurontin) and instructed me to build up to taking it three times a day.

MIRACULOUSLY, I can now walk, do yoga, and dance.

Unfortunately I'll need to take this medicine three times a day forever.

For me, a small price to pay for the ability to be pain-free.

Comments (28) | Add comment

Maria Gifford, Editor

8/21/08 6:10pm

Hello Judith,

Good news that you can once again walk, do yoga -- and dance! -- for exercise. That's great! Keep us posted on how you're doing from time to time, and above all -- enjoy the pain being gone and being active and healthier!

Best regards,

Maria

Phyllis Johnson, Health Guide

8/22/08 6:07am

I'm so glad the Neurontin worked for you. I have neuropathy in my hands and feet, and despite the best efforts of a very good neurologist, nothing has helped me much. I think part of the reason was that I had neuropathy for about two years before I so the neurologist. Although sometimes neuropathy goes away by itself, I'd recommend that anyone who has Taxol-induced neuropathy see a doctor right away. There are a variety of drugs for it now, and some people have good results from vitamin therapy.

Marie

9/23/08 9:14pm

I developed severe peripheral neuropathy while being treated with Taxol for Inflammatory Breast Cancer. I was receiving the Taxol and radiation treatments at the same time to treat metastatic disease. I started with symptoms of tingling and burning and itching within several days after my first treatment. My oncologist prescribed Elavil and it helped but I was very lethargic. The symptoms got much worse after the second treatment. The itching was so severe I was using a hairbrush on my arms and hands and legs and feet. I felt like my arms and legs were crawling or jumpy. I found an article in an internet search that suggested that the side effects of the Taxol could be reduced by getting it in a 24 hour infusion rather than a 3 hour infusion. My oncologist agreed to try this and it helped. I received the same premeds and just checked into the hospital for 24 hour r&r. The progression of the neuropathy was not as rapid as before but I did not regain any of the function that I lost earlier. We used the longer infusion method for the remaining treatments. I was eventually switched to Neurontin. It has been 12 years since I completed the chemotherapy and I still have severe neuropathy. I take 1800-2400 mg of Neurontin daily. Even with this medication, I have bad burning pain when I am on my feet a lot or do a lot of walking. The only solution for that has been to get off my feet and take pain medication. Although the neuropathy is painful and limiting, I am still very thankful that I am alive.

amelia

10/22/08 12:55am

I received 6 treatments of carbo-taxol for stage 3 uterine cancer. its been 10 months since my last chemo. I have significant pain and numbness in my feet and have since Dec of last year. I went to my oncologist today and she told me I may have this pain and numbness for the rest of my life. I am on gabapentin already along with some oxycodone. After a long day at work I will be in significant pain no matter what medication I take. In addition, the joint pain that I am having is apparently because of the lack of estrogen because of the hysterectomy. I cannot take estrogen because of the uterine cancer being estrogen receptive.

I am very glad to be alive, dont get me wrong, but as I am sitting here writing this I am have various shooting pains and pain in my feet. I am overwhelmed by this diagnosis, maybe even more than the cancer itself. I mean they went in and got it out, but I didnt think about the aftermath. I was told most people have nueropathy for 6 months or so. The doctors also told me that a small % of people get permanent issues. I just didnt think it would be me.

Sandra

2/10/09 12:32pm

I totally understand your pain and facing the hard reality of a life with it. I had neuropathy before cancer treatment (unknown why) I am on neurronton and hydrocodone but like you I can't stand for long nor walk too far. My hiking boots give me the best comfort, I took taxol for 12 weeks Now the my finger tips are numb and tingling! They hope it will go back to what I had before! I HOPE so. we have enough to deal with. Good luck to you;

Greeneyes1501

4/ 7/09 4:07pm

After receiving 6 months of chemo, which apparently included Taxol, I found that both my legs from my knees to my toes were NUMB!!!!!! If my cat rubbed up against my legs, I couldn't feel it at all-- and had to look at my feet to see if I was wearing any shoes -- or not!! My left leg was more numb that my right leg-- and I figured out it was because the chemo IVs were always put in my left arm, as the breast cancer was in the right breast!!! Not being told of these possible side effects at all by my oncologist, I was notified by mail that I was in a "Class Action" lawsuit pertaining to Taxol-- and several months later, opened a letter saying the lawsuit had been settled and enclosed was my share -- a check for ONE US CENT!!!! I had quite a good laugh that day, especially when I took it to my bank to deposit it-- and the tellers passed it around in disbelief!!! Some friends said I should frame it- save it, etc., but I never wanted to be reminded of it again!!!

Anonymous

1/19/10 10:57am

I am in the same siituation as above and keep looking for some relief, but to no avail.

Is there any solution or hope?

Karen

9/14/09 4:14pm

I am a 7 year survivor of breast cancer, age 67, and I still have the numb toes -- I was prescribed Neurontin because of a different problem last year and realized after a while that my toe numbness was really helped by the medication. Shortness of Breath is still something that is a real problem for me --- I want to blame it on the Taxol but I did smoke for 15 years, had whooping cough when I was 3, and have GERD. Has anyone else developed s.o.b. since takin Taxol?

Joanna

2/24/10 3:47pm

I had 6 mos. of chemo. approx 2 yrs. ago. About 5 mos. ago, I started having pain & numbness in my toes. Sometimes, it feels like they are on fire. Sounds just like what you all are experiencing but does anyone know if this condition can occur this long after having chemo. ?

PJ Hamel, Health Guide

2/24/10 6:39pm

ANYTHING is possible with demon chemo, Joanna. I'd definitely mention this to your oncologist when you get a chance... PJH

Joanna

2/25/10 10:08am

Very good point ! And thank you, I will take your advice. JP

candice

9/16/10 3:48pm

I have the exact same thing in my feet! I finished chemo in Feb. .. also had the Taxol (4 cycles)... My feet feel like they are on fire all the time.. it's like I'm standing barefoot on hot asphalt!... 24 - 7 I'm taking Topomax.. helps a little...Neurotin didn't help.

Judith Rosenthal Schwartz

9/16/10 5:56pm

Hi Candice. One other thing I do about it is the use of cannabis, medical marijuana. Hopefully you are in one of the states where this is legal. It provides some relief and helps more immediately if I should miss a dose.

Judith Rosenthal Schwartz

9/16/10 5:56pm

Phyllis Johnson, Health Guide

9/16/10 7:10pm

My neuropathy started about a year after I finished Taxol, so, yes, it can occur after chemo is finished. There are other causes of neuropathy, however, so you may need a thorough evaluation to see if this is chemo-induced. Start with your oncologist or primary care doctor about ideas for ways to reduce or eliminate the pain. A wide variety of therapies including using vitamins, drugs, and/or acupuncture are available to try. If your current doctors aren't interested in aggressively tackling this problem, ask for a referral to a neurologist, who may have more expertise in dealing with nerve problems. For some people neuropathy is temporary. I hope you get good results from treatment.

Peg

1/ 6/11 8:55pm

Hello

I had chemo 6 years ago started haveing pain in one hand and arm in 2007 and still have it now in both hands,arm and feet burning pain all over. Some days are okay and other not. cold weather it really bad like tonight. doctor says i will alway have it. Can not work any more. Love love laugh often

PJ Hamel, Health Guide

1/ 6/11 9:57pm

Peg, I'm so sorry you've had this reaction. Most people don't have a clue about cancer's long-lasting effects, do they? I'm glad you're able to laugh and love - hold onto that... PJH

Peg

1/ 7/11 7:05am

Hello

Not even Doctor know about long term thing that happen to people with cancer treatment. My doctor does not believe half what I say. Guess what I am not going to him any more. waste of my money. I have a good doctor for my neuropathy. I have to travel 125 miles but worth it. I try to keep a new happy . i have a great husband that helps a lot. Keep in touch Peg

PJ Hamel, Health Guide

1/ 7/11 1:06pm

Peg, having an oncologist you feel good about is a huge, positive - and totally worth the 250-mile round trip, in my opinion. Take care- PJH

Peg

1/ 7/11 1:50pm

Glad you have a good Doctor I will find one soon peg

Bobbie

11/ 2/11 9:48pm

I have just the opposite. My feet costantly feel like they are buried in a snow bank. The cold feet, numbness, tingling wouldn't be bad if not for the excruciating pain. My feet cramp up on me and the pain goes thru to my toes. My legs ache constantly and My arms and hands hurt as well. Sometimes I wish I'd died of the cancer than to have all this pain. I take percocet10/325 3 times a da along with Lyrica. I just started taking Tamoxifen after going off all 3 other estrogen inhibitors. I had Chemo in 2009 after being diagnosed w/ stage 3 Inflamatory breast cancer. Yhanks for listening.

Phyllis Johnson, Health Guide

11/ 3/11 6:12am

Bobbie, your symptoms sound like more than typical Taxol side effects, which are usually more in the hands and feet. Have you had a full evaluation of all your symptoms by a neurologist or internist to rule out any other underlying medical conditions? I'm also an IBC survivor struggling with peripheral neuropathy, so I definitely empathize with you. Lyrica is supposed to be pretty good for nerve pain, but I have never had any relief from other types of pain meds like Percocet (I didn't try that particular one, so if it helps you, go for it.)

I would hate for you to find out that you had another problem along with the neuropathy that is going untreated because your doctor assumes that you need pain killers for the neuropathy. Oncologists are great for cancer, but medicine is so specialized these days that they aren't always up on other kinds of health problems.

I hope you can find some relief.

bobbie

11/ 3/11 11:43am

Some of my symptoms come from the arimadex I took for the first 10 months after finishing Radiation. My doctor switched me to aromasen and after 6 months I wasn't any better so he put me on Femara. That only took about one month to realize my symptoms were getting worse so now I'm on Tamoxifen which scares the heck out of me because of the long list of side effects that can occur from taking it; including death. So what is worse; living in fear of the pill or living in fear of the cancer cominh back? Actually, I don't dwell on wondering if I'm gonna get cancer back. I have had several acquaintences that have died of breast cancer. So when my time comes Iam ready to accept it.

Phyllis Johnson, Health Guide

11/ 4/11 5:19am

OK, now I understand. Problems from both drugs do explain your symptoms better. Although there are some potentially dangerous side effects from the Tamoxifen, it is a drug with a longer safety record than some of the newer aromatase inhibiters. I wasn't eligible for any follow-up drugs, so I haven't been in your position. But balancing recurrence risk later with debilitating side effects now is a question only you can answer. As an IBC patient, you have a high recurrence risk, but I don't know how much that is cut by the follow-up drugs. For some people going from a 40% chance of recurrence to a 30% chance might not be worth the drug side effects. I'm just making up the numbers here; only your doctor can give you the stats for you.

In my case, Taxol got me up to a 45% chance of five-year survival compared to 40% with just AC and radiation. To me that was an important 5% that is worth my neuropathy 13 years later. Since you are ER+, your stats will be different from mine.

PJ Hamel, Health Guide

11/ 4/11 7:56am

Bobbie, I think you'll find tamoxifen comes with a whole lot less bothersome side effects than any of the AIs. You may experience weight gain - that seems the most "serious" of the common effects. As for fearing death due to tamoxifen - the chance of that is incredibly tiny, and much smaller than your chance of recurrence if you don't take it. So, I hope you can stay on it for the entire course.

And I hope that over time your pain diminishes; if it was due to the AIs, it does take awhile. But little by little, you should start feeling better. As Phyllis says, do ask your doctor about other possible underlying causes; it may be circumstantial that you had such bad and continuing pain while on the AIs. Best of luck to you - PJH

Kathy

1/12/12 11:35pm

I am nearly 12 years out of taking chemo last rounds were Taxol and I had traumendous pain while taking it and over the years the pain has gotten so much worse especially in my right hand which is the same side as my breast cancer.

I have tried some drugs and they did not help. Sometimes I can get the pain tolerable but as others have said after a full day at work it is worse also.

I also have severe osteoporosis and arhtritis and my hands are deformed and swollen from this as well. I took Tamoxifin for 5 years and now I have been taking Femara for over 6 years because there is no studies done to day how long to take it. When I talk to Oncologists or look at cancer sites they about half and half about the opinion to keep taking it or get off. Since I am in so much more pain and I can not do my work with my hands hurting so bad( I have been a nurse for 30 years) I have decided to get off the Femara and see if any of the pain goes away. It could be a side effect of Femara also........

Just hope the cancer stays away and that my pain goes way now..... tough decisions we have to make for ourselves sometimes.....

Wish there was an answer on this site but I will keep on looking......

Phyllis Johnson, Health Guide

1/13/12 5:43am

Kathy, it is all very complicated, isn't it? Without any data on how long to take Femara, stopping it for a while sounds like a good experiment to me. If you see a dramatic improvement when you go off it, you can then decide about the quality of life issues. If it turns out that your pain isn't from the Femara, you can go back on it and hope that it helps keep you recurrence-free. If you haven't thrown a neurologist into your mix of doctors, I would recommend checking in with one for insights into the neuropathy part of your pain. I recently did that, and found it helpful although the bottom line was no change in what my primary care doctor and oncologist had already recommended. According to this neurologist, gabapentin (Neurontin) remains the safest, least expensive drug for neuropathy, and for most people it works as well or better than some of the newer drugs.

PJ Hamel, Health Guide

1/13/12 6:08am

Kathy, as you say, oncologists seem pretty divided over how long you should continue to take an AI (e.g., Femara), to receive maximum benefit; there's just not enough data yet to make the call. Which means there's the possibility that taking it more than 5 years will actually hurt you in the long run - who knows? If I were you, I'd go off it and see if your pain is reduced. If it is - great, you can continue to work, feel good, and hope for the best, cancer-wise (which is what we always do anyway). If not - might as well go back on the Femara.

If you do decide to go off it, ask your oncologist what you absolute risk of recurrence is; s/he should give you a number like 8%, 12% whatever (rather than saying "your risk of recurrence is 50% greater if you don't take Femara"). Once you know that absolute number, think hard about it; it's probably fairly low, as it is for most survivors; so you can take heart that the odds are with you. Good luck - PJH

Long-term side effects of chemo with Taxol

Ask a Question