taxotere neuropathy?

janette2007

My Oncotype score of 15 shows that chemotherapy would prevent metastatic recurrence in 2 to 3 percent of women like me. I am considering a 12 week regimen of Taxotere Cytoxan. For those who have taken Taxotere:

--did you get neuropathy - what were your symptoms?

--When did it show up - when you were on chemo, or as a delayed effect? If I get neuropathy, I may want to stop treatment - but that won't help if it is a delayed side effect.

--Has the neuropathy changed over time?

Thank you for your help.

dkmaustx

I didn't get Taxotere, I received Taxol. The neuropathy started right away after the first Taxol infusion. I asked my doctor about it, and he gave me a list of things that might help called the Dana-Farber Neuropathy regimen. I started taking extra Folic Acid and the amino acid L-Glutamine after my second Taxol, and I'm noticing that this time after my third Taxol it isn't as bad as it was the first two times. I've had 3 weeks in between infusions so it got to a point where it seemed most of both feet and some parts of my hands were numb. My face, neck and ears even had a few tingles and some numbness. Then before the next infusion it subsided to where most of my fingers felt almost normal.

After the second Taxol infusion was the worst. I had not just tingling but that prickly pins and needles feeling on my face, neck, scalp, hands, and feet. Luckily it went away after a day or two and like I said things were almost normal before the next treatment. There are a couple persistent spots on the bottom of my feet but it was bearable.

Keep asking your doctors and nurses questions, and I hope they'll give you what you need to help control these symptoms.

Lynn12

Jannette,

I did 6 treatments of TC three weeks apart. My last one was May 8th. I did not get any neuropathy at all. So far the only lingering effect is about 3 weeks after my last treatment, my ankles and feet swelled up. I was on diuretics for about 20 days and went off of them about 5 days ago. The fluid is starting to return, but not enough where I feel like I need to take the pills, I'm hoping it keeps itself at bay.

Best of luck!

Pharmmom

I had taxotere in 2003. I had numbing of my toes and tingly feelings in my fingers. It is gone now. Good luck to you!

Barb

tooyoungtohavebc

I had neuropathy in my feet and I had a lot of other bad side effects with evil taxotere. Severe pain all over and especially in the balls of my feet, eye infections, skin problems on my feet... BUT...my tumor shrunk a LOT...all of the symptoms went away about a month or so after treatment so it was worth it.

BettyeE

I had TAXOL X 12. Just finished with taxol. I have pain on my back, underarm area and mast. area. I also have a little numbness in my left foot. The numbness is not enough to bother me. The pain was. I was prescribed Neurontin twice a day. I hope it is helping.
Bettye

janet11

I had 6 Taxotere and Carboplatin.Had about half of each foot get tingly and then totally numb. But now 6 months after the end of chemo I'm just thinking of this and realize that all the numbness is gone.

2curvy

I have had 3 Taxotere and Cytoxin. I have one more to go this Thurs. So far, no neuropathy. Actually, my side effects have been minor. My legs are very tired and achy; that is the most lingering side effect.

I have heard though, that neuropathy usually sets in after the treatments are finished. Good luck!

janet11

Mine started (that I noticed) with tingling around cycle 2-3 and then numbness that later expanded to more and more of the foot around cycle 5. Fingernail effects didn't hit until after chemo ended (but they're doing fine now).

lisaelder1972

I got Neuropathy right away when I started Taxotere.My legs were affected pretty bad and I had to walk with a cane for a few months.I take 600 mg of Lyrica daily and lots of Percocet and my legs are somewhat better but my left arm and hand is killing me.It hurts so bad it wakes me at night and when DH tries to hold my hand it feels like 1000 needles sticking in it.I am having nerve conduction studies done July 9.If I had known about this crap and the AC damaging my heart,I would have ran from chemo.It effects everyone different though and from all the research I have done Taxotere is a very powerful drug with great results.Good luck.

Lisa

makaryne

Glad to know I'm not alone in this neuropathy stuff. Med. Oncologist told me that he's discovered that younger women tend not to be able to handle it as well as older women. Had I known that I would have said no to taxotere and stuck with FEC. (Finished in January 07). I'm thinking that the weather has something to do with it as lately it seems to be worse when it is hot/humid out.

I went for the nerve conduction test and was told that my response was moderate, indicating that this is supposed to go away with time. Hopefully that time is soon.

R

fireba

I've had 3 of 4 Taxol treatments (which I think is a pretty similar drug), and my side effects have been moderate. Achey muscles and joint pain (mostly in my legs) for a few days after each treatment. And my fingertips have been numb since the first treatment, but not so much that I'm clumsy with my hands.

tos

I finished treatment 2 out of 4 last week of Taxotere and soon after this last treatment I began to have neuropathy in the balls of my feet constantly.
I am 60 so not exactly a young woman although I sure don't feel old and the se's from Taxotere have put quite a whammy on me. I don't like it but this is my second time to be dx and I want to do all I can and know that I did do all that I can to keep it from coming back again.

2curvy

I just finished 4 Taxotere and cytoxin and haven't experienced any nueropathy. An occasional tingling in my right hand, but it seems to coincide with the cold (it hasn't been cold here lately), and clears up pretty quickly. I am 48, not young. I also didn't have any nail problems.

LisaSDCA

I just copleted 6 TAC (yay! FINISHED!) and didn't begin to experience anything except mild, transient neuropathy until after the 5th tx. The numbenss in my toes and the tingling in my fingertips did not go away between the last two infusions. My onc. offered to reduce the Taxotere by 25% but I'm a triple neg. BRCA-1+ and I wanted it ALL. I have every expectation that the neuropathy will gradually stop - I have heard from many women who had it worse than I and it went away after a bit.
The swelling in the lower legs has been a challenge - makes it painful to walk when it gets acute. But that, too, I expect to be history before long.
Good luck!
Lisa

RacheltheMultiTasker

CIPN: Anyone out there been diagnosed with it? I'm 16 years out from my taxotere treatments. Had 4 large dose sessions. Have found visualization PT best for physical functioning. Am in my third year of outstanding PT training. Have just finished a day with a neuropsychologist to be tested on cognition. Will be starting cognitive rehab in about 2-3 weeks. Find that when a nerve triggers to 20 on the 1-10 pain scale, the smallest dose of plain oxycodone takes away the pain in about 20-30 minutes. Leaves me functional, but don't want to use it unless it's absolutely necessary. When it is, one pill usually works. Rarely do I need more than one to do the job.The CIPN is now in my feet, legs up above the knees, arms, hands, vision, and cognition. Am working very hard, every day, on the rehab. Have about 6 good hours a day: from about 6 a.m. to Noon. We're a genetically high-risk family. Understand that there are now about 60 clinical studies listed at nihclinicalstudies.gov Some are on massage. Wonder if anyone with CIPN is having good results from that.

gardengypsy

Rachel~

I just finished a day of neuropsych testing as well. The results come in next week and then I am applying for disability. Until then, I am barely hanging on to my job.

I have been diagnosed with CIPN. I am doing 600 mg of Gabapentin a day and that is keep the pain down to a 5 or so...I am 9 months out from chemo and it has recently gotten much worse. One thing I know is that I am not exercising enough.

I am doing a lot of work on reaching out to alternative health care practitioners. In the coming weeks I will be meeting with a yoga therapist and a DO.

Do you know what the cognitive rehab will consist of? I have just gotten a referral to that as well.

Good luck with these challenges!

RacheltheMultiTasker

HI, gardengypsy,

So very glad you actually got a diagnosis of CIPN. The cog rehab does work. My therapist was listed as a speech therapist and knew just what I needed to do. Some of the work was done on my iPhone and were free items. Some of the work was done with equipment she had in her office. I'm hoping you got a recommendation for the therapist from the person who tested you. I'm a year out from our work together. Medicare and my insurance did cover two years of work. I was making progress, tested again after 1 year, and definitely showed progress, so the insurance went into a second tier of necessity. I'm really OCDC about doing that 1 hour of PT and 1 hour of Cog every single day...no matter what. Doing these tasks every day gives me good function from about 5 a.m. to 1 p.m After that my mind & body kinda quit or cycle into nerves triggering into a 20 on the pain scale if I don't rest. I've been using 5 mg of oxycodone for about 7-8 years of the 18 I've had CIPN. Use it only as needed, not always every day, but sometimes 2-3 in one 24 hour period. My internist is now prescribing them each month. The Rx can only go to 1 pharmacy, be written by only 1 doctor, and he had to be finger-printed. I put in the request the first of the month. His office sends it to the pharmacy electronically. ...and...it permits me to do research, write, and still walk the 3 miles of a 5K and cross the Finish Line...last...with my walking partner...who walks at my speed...anywhere from 35 min/mile to 22 min/mile on a good day. We also don't always finish last. There's a 90+ gentleman who sometimes takes that honor. So very good to find others out there. Please keep in contact as you wish. oh...I garden, too! ehugs.