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leg pain from taxol

clr129's picture
clr129
Posts: 10
Joined: Dec 2011

I just started Chemo last week for Uterine Cancer. I am taking Taxol and Carboplatine. 2 days later I experienced severe leg pain. I had to go to the emergency room and they said it was 100% due to taxol. As I am reading about some others on here who have experienced it, I noticed many of them are from 2004, 2002. I am wondering if anyone else has experienced this and if they found something that worked. Pain pills did not. I am terrified to read that this could be a permanent thing. I am hoping since 2004, there have been some new studies out saying what to do.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had the the same chemo drugs as you, but in 2009. Yes you will have some minor aches and pains, as this was part of symptoms per my doc. I used Aleve which helps with inflammation. Surprised pain pills didn't help....have you tried some different ones?

It's definitely not permanent just part of the side-affects from chemo. You might try moving around, vs lots of sitting as that could flush some blood thru the systems, relieving the pain. Are you as well drinking lots of water/fluids -- this can help too.

Also, "generally" with most of us, chemo is cumulative so the side affects could get more intensive as you go.

Best part, it'll all be over sooner then you think. Hope you're enjoying the holidays!!
Jan

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I started chemo on 12/12 of this year, taxol and carboplatin. Doc told me to expect 3-4 days of leg pain and gave me a prescription for hydrocodone and told me to stay away from NSAIDS (aleve, aspirin, ibuprofen). Like you, the meds did little to help ease that feeling that someone drove a hot poker through my ankles. And, the pain lasted nearly a week.

The good news is that the pain DOES go away. My chemo was on a Monday and the following Monday afternoon I started feeling like a normal human being again. By Tuesday I had a ton of energy and the whole week has been great!

The next milestone in my chemo treatment is the hair loss. Doc said it would start 17 days after the first taxol, which would be the 29th. But last night at 6pm my scalp started tingling like a ponytail headache and sure enough when I ran my hand through my hair quite a few strands came out. So far it's no big deal - just more hair in the brush and in the shower than normal, but no hunks of hair.

My 2nd chemo is on January 3 - I'll letnyou know if the leg pain is better, worse or the same.

Hang in there!

Liz in Dallas

Debdd
Posts: 2
Joined: Dec 2012

I just had my first chemo (carboplatin and taxol) on Monday, 12/17/12 so I'm new at this - today 12/19 the leg pains started - so you eased my mind a bit that it can be a symptom from the chemo meds. I'm waiting for the extreme fatigue they said you get - doctor thought it would start the third day after chemo which is tomorrow - so we'll see - just not knowing what to expect is a little scarey but I'm a strong positive person (a little challenging at times now) but I try to just get through one day at a time - I am hopeful that by next Monday I will start feeling better like you did.

Thanks for sharing - it helped

Deb in wisconsin

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Hello,

I had this pain during my Taxol treatments in 2010...It is a side effect...and it does HURT!

My doctor to take the Decadron and it did help...tell the Doctor at the next chemo visit and maybe they will entertain the option of continuing the Decadron a bit longer...

Laurie

HANG IN!

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Yes I experienced severe leg pain though the worst pain was in my hips and where ovaries once were. It went away four or five days after getting the taxol.

I never took the standard pain pills because I didn't want to have another reason to be constipated but I found that Ibprofen PM worked at night.

I don't believe you have to worry about it being permanent. I've gotten three rounds so far and been on a two month break from chemo to get radiation and I have had no leg pain since my last chemo treatment.

Take care,
Cindy

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I'm a little surprised & dismayed that no one was told that the muscle pain/side effect from taxol could be related to low potassium. It won't hurt to eat potassium rich foods (mostly fruits) before & after taxol treatments.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

factor for cancer.

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

I agree that low potassium and also low sodium can cause muscle pain and cramps. I am afraid that the medical fraternity will always look first to drugs for treatment before considering a nutritional approach. It is all about maintaining their domain. If dietitians, nutritionists and doctors worked more closely together maybe we could experience a less chemically challenging approach to symptom management

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

My leg pain was in my joints - ankles, knees and hips. It started about 36 hours after the carbo/taxol infusions lasted for about 5 days. No painkillers seemed to make any difference and I struggled to find a position where i was comfortable. I understand this is a very common side effect. Since stopping the chemo I have had no further problems, so I am sure that yours will go away.
Kindest regards
Helen

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

I too had leg pain but mine usually started about three days after chemo treatment. One of the Chemo nurses told me that I could take some Benadryl and that would help with the leg pain. It worked for me. I did clear this with the Onc Dr. though. I also would take Advil PM at night and elevate my legs. If the pain was real bad I would heat one of the microwaveable heat pads up and put them on my legs. That would help too. The pain only lasted a few days and then it gets better. Hope you find something to help with the pain. trisha

Shelby54
Posts: 5
Joined: Sep 2011

I had my first chemo, same as yours on 11/16 and had 4-5 days of severe leg pain also. The pain started on the 3rd day after chemo and was so intense at night, I had trouble sleeping. My doctor suggested using Advil and Claritin together but it really did not put a dent in the pain. I also used the microwave heated bags at night and that helped somewhat. I also tried wearing leggings at night and during the day. They acted like compression tights. I think it helped. The good news is after the second chemo, the pain was far less intense and much more managable. I am not sure if it was because I tried to drink more fluids the second time and eat more fruit. Not sure if that is the answer or not. I just had my 3rd chemo today, so I will let you know if I get it again. I am hoping not. Good luck with your treatments. Shelby

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

The leg pain after the 2nd chemo hasn't been as bad. I'm taking Tylenol arthritis (650 mg of acetaminophen) and using heating pads and it helps.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I took taxol after breast cancer 12 years ago. I had so much pain I wanted to quit chemo. He gave me some pain pills, I think it was hydrocodone and I was able to go thr
ough the chemo. I learned it is important to control pain! I finished chemo.
I finished chemo. Diane

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Oy vey, yesterday was the worst. I broke down at 4am and took 2 hydrcodone and finally fell asleep at 5:30a. Slept for 6 hours. Woke up feeling ok. I count my lucky stars this is only temporary. I've also developed a metallic taste in my mouth - the only foods that are tolerable at this point are heavily soy sauced Chinese food, and heavily vinegared German potato salad.

I keep telling myself just another day or two of this and I'll be back to normal!

Liz in Dallas

Susanna23
Posts: 66
Joined: Dec 2010

It's a year ago tomorrow that I had my first (of six) carboplatin and taxol - one treatment every three weeks so it finished in April 2011. These leg pain posts certainly bring back memories! Liz, I noted my symptoms in a diary that I also used to count off the days till end of treatment. First cycle - no leg pain, second - two days....and so on, increasing to a whole week on the sixth and last cycle. It wasn't exactly pain - more a weird burning, twitching, achey feeling in the ankles, calves and feet that kept me awake. I tried various painkillers - and Co-codamol (paracetamol and codeine, the strongest over the counter painkiller you can get in the UK) was quite helpful, as were hot baths with Epsom salts. I have also seen glutamine mentioned though I didn't try that as decided not to take supplements during chemo in case of interactions. Once I finished with chemo, the pain/discomfort vanished totally - if it's any comfort, it will likely one day be just a distant memory for you.
I also did have one day (only) when I had a funny taste in my mouth.
Reading this thread makes me realise how very common leg pain is with taxol - good luck, Liz, I hope you find something that works for you. Also, most of the chemo cycle (weeks 2 and 3) I felt perfectly fine and hope you do too.
Take care
Susan (London, UK)

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

Liz, I remember very well the pain and the lack of taste. Leg pain dealt with by heating pads, icy hot, hot baths, some pain pills but mainly just tried to deal with the best I could. The taste buds is another story for me. My go to food was a turkey chilli with lots of hot sauce just so I could taste something.

The nurse at the cancer center said to eat cold foods to help with the taste but it was always the spicer and hotter that actually I could taste. I did only eat about once a day when that was going on and once the taste buds came back I could eat again. Just keep on thinking that this too shall pass and soon you'll be through with the chemo altogether. April will be one year since DX and surgery, May will be one year since start of chemo and August will be one year after end of chemo. It is just one day at a time. Keeping you in my prayers. trish

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Everything tasted like metal. How awful. Lemon drops helped with the taste. Someone told me licorice worked for them. I did not find that helped much. Cold icy things helped with the taste,too. Others have mentioned spicy foods, but my stomach does not like spicy,so that was not for me either. I asked the doctor for suggestions. He told me to just finish the chemo. Not much help there! About two weeks after I finished chemo food did taste good again.

I was lucky I never had the leg pain with my taxol treatments (13 total between two different sessions), so I can't help you there. Hope both the leg pain and metallic taste get better for you. Good luck with your other treatments. In peace and caring.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Good news: my taste buds are returning to normal (though I'm still partial to vinegary German potato salad)
Bad news: my legs still hurt 8 days post-chemo, despite hydrocodone or Tylenol 650
Good news: the pain is down to about 3 out of 10
Bad news: chemo nurse has never seen anything like this and thinks it could be a signal of the onset of arthritis, which does run in my family
Good news: only one more round of chemo and leg pain to deal with, and I'll explore the arthritis angle LATER!

Liz :)

imackie48
Posts: 93
Joined: Nov 2011

I am 4 days post chemo, the leg pain is unbearable, finally got some vicodin to real the pain. Really everything hurts, just praying for it to stop hurting. I only took a half pill I would be afraid to take a whole,.
Why do we woman have to suffer so much...With this dreded disease

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I'm jealous you got vicodin. I've asked (begged really) twice for something other than hydrocodone which doesn't really help and gives me awful insomnia. Somehow I need to get past the nurses to the doctor.

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

Other than asking for stronger pain meds, I can't recommend anything to ease your pain. But you're right - it can be really bad. But I pray that it will be temporary for you and you will come through this chemo OK.
In my thoughts
Helen

tears2overcome
Posts: 98
Joined: Jan 2010

Gosh remember this so well, pain was unbearable for me. I walked into emergency room one time and they wanted me in a wheelchair i barely could walk. I wanted to cut my own legs off. Heat made it bearable for only a few hours the rest of time id walk and walk and walk mostly at nite the pain would hit me and id cry just as much as walked. It lasted for 3 days if not more. I was so glad when it was over. I dreaded the next chemo session knowing it would start over and over again.
If my cluster of cells dont' shrink they are going to put me back on this again, toxal/carp, and only 5 months ago or so i finished adyrmycin and cisplatin..I am famaliar with the metal taste it was terrible and I was told by my oncologist eat what you can, and keep the weight up, no losing weight. I remember not much tasted good , that was on days I could taste.
I read about a woman about to lose her hair, that was devestating for me both times, 2x in two years and right now I feel pretty good and enjoying my hair......what I enjoy more is not getting stared at so much, when have no hair the stares are sometimes unbearable.....
Wish you the best with your treatment.......
Tears

Mdotsie47
Posts: 28
Joined: Dec 2011

I have had the terrible leg pain, too. Soaking in a warm tub helped the most. My son suggested a glass of white wine just before going to bed. He's had a lot of shoulder surgery and it helped him.
It actually did help! I slept all night.
I was determined to stay active during my chemo, but the last three days I've felt like an invalid. Just too much pain to do anything.
I 'm going to try the Benadryl someone suggested in these posts. It knocks me out but if it helps the pain it's worth it.
I feel very frustrated by my lack of get up and go. I'm usually active, and being knocked out by chemo came as a surprise!

ccfighter
Posts: 399
Joined: Jan 2012

I had severe leg and joint pain after my first round of carbo/taxol for cervical cancer. I brought this up with my oncology practice and they recommended three times a day of L-Glutamine powder. (purchase at a local health/GNC store) Second round, minimal pain. No pain meds taken but one day of tylenol. First round was taking percocets to get through the night, squirming with leg pains. With L-Glutamine, pain almost non-existent (almost). Hope that helps. Hugs to all. Fight hard, laugh often!

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

On my third round of chemo, my onc suggested we skip the Neulasta shot the day after treatment to see if that helps alleviate the leg pain. Hallelujah! The day of chemo and the day after chemo have been great - hoping this does the trick :)

Liz in Dallas

julia12756
Posts: 22
Joined: Jan 2012

Reading all these posts makes me nervous. I'm writing this in my hospital room during my first round of chemo (Ifosfamide/Taxol). I'm here for the next 2 days for the rest of the infusion - I am hoping no leg pain!! It sounds terrible! My heart goes out to all the brave souls on this message board. But we are all fighters - never forget that and never give up hope!

Julia

pakb56
Posts: 141
Joined: Jan 2012

Can someone elaborate on what type of leg pains these are? I am very concerned because I have suffered from leg cramps for years. When I say leg cramps I am not referring to your run of the mill, point your toe to your nose calf cramp.

My cramps are almost undescribable. They start on the side of my foot or in various places on my leg (mostly never in the calf). I had one early this week that left the muscle so sore I could barely walk. I actually passed out one time from the severity of the pain.

So, as you can imagine, the talk of leg pains makes be very nervous. Any information you can share is appeciated.

Thanks and be well....

Pat

imackie48
Posts: 93
Joined: Nov 2011

Today my oncology nurse recommended glutamine powder for my neuropathy in my hands, she said to use 30 gms per day, I got some today and put in my water it's tasteless, we'll see if it works, I'm hoping for some relief from my leg pain too.
Irene

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

(This is not directed to Irene who has a unique problem due to chronic neutropenia. )

It seems that most women get neulasta routinely rather than wait for low blood count.

I NEVER needed one of those shots during two separate episodes of chemo treatment.

These shots are VERY expensive and they obviously cause major discomfort. You might consider refusing the shot and the related pain and see what happens.

Wishing you well, Mary Ann

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

My gyn onc did not order any Neulasta until after my 3rd chemo when my counts dropped below acceptable level. Chemo #3 and #4 were delayed several weeks each. Three weeks after #4 Dr. decided that since I couldn't get my counts any where near acceptable, that my body had probably had enough so I didn't get my last 2 chemo's.

I really did not have much problem with any side effects/bone pain from the Neulasta. I did have a couple of days of some shooting bone pains, but they were sporadic and short lived. Guess I was just very fortunate!

Yes, you are correct....it is a very expensive injection!

Best to you!

Karen

ccfighter
Posts: 399
Joined: Jan 2012

I didnt need nupegen until my third round also. I didn't noticed increased bone pain from these although I did develope a headache for the five days during the shots. If nulesta is a bit too rough, you could also opt for the less convenient nupegen shots instead. For neuropathy I was told b vitamins.

imackie48
Posts: 93
Joined: Nov 2011

After getting 6 shots my WBC is only up to 1.5 , and I'm 7 days post chemo, so dr says its reached it's peak, when I got may chemo on 2/15, my count was 2.5 so I hope it reaches that point so I can stay on schedule. Now I can't go anywhere besides drs office, fear of infection. Would did people do before the computer to communicate with the outside world.
Irene

pakb56
Posts: 141
Joined: Jan 2012

It seems so odd that we want to have chemo! Hope all goes well. Gota love the internet!

imackie48
Posts: 93
Joined: Nov 2011

Today when I mentioned my leg pain, oncol said to try B6 50mg everyday, for the neuropathy.

Pat51
Posts: 111
Joined: Feb 2011

I had Neulasta shots 24 hours after each chemo treatment. The shots are expensive ($5,000.00 each). The shots did help my blood counts but I still had two delays during the chemo treatments. Neulasta did cause a lot of bone pain. The pain was unbearable until the doctor prescribed vicodin for me. That really helped me with the pain and made it bearable. I also take vitamin B6 for neurapathy, which helps.

SettledSue's picture
SettledSue
Posts: 24
Joined: May 2012

I had bad knee pain after my first two taxol/carboplatin treatments, but I am pretty sure the pain was from the Neulasta shot. I only had a little knee pain after the third round and none after that. Sue

G_LUV
Posts: 2
Joined: Dec 2013

Yes the pin afer the Neulasta was unbearable, I would take that pain in exchange for the body aches Im having now. I wish I knew od side effects prior to, instead of having to figure our

G_LUV
Posts: 2
Joined: Dec 2013

I was diagnosed on July 3 2013. Wil be doing chemo prior to surgery.  I started cheno wih A/C ( adriamycin/cytoxan) with Nulasta the next day. I started feeling body aches on thursday of the second treatment. i ha chemo every two weeks,which was fine, gave mea break.

On Oct 21st. I started T/H ( taxxol/hereptin) along wih a new drug that got approved Perjeta?? Since starting T/H, I was taking from job after a 911 call. I hadnt been feeling well that day and started getting chills and coughing. Went to yhe bathroom and started coughing and blood started squirtung everywhere from my nose. I tried for 20 mins to get it to stop, someone called 911. The following Thursday, I was in tthe hospital for pneuomia. ..,,Thursdays just dont seem to be my day.. I WASNT able to receive treatment thatt following Monday, my heart rate ws 127-129 and oxgen was low.. I am now out of work.

I also had be complaining to doctor about mt head and feet getting cold. I wake up to put on my winter hat, and my feet doesnt get warm. I put on several pairs od socks with slippers. my shins hurt. It feels like im standing outside with no shoes on. It irritating. My body gets hot at night and my feet is freezing. 

Which brings me to Dec 18th, night before I felt like i was getting a cold and could feel pressure in my face and a headache coming. I came to doctor myself up. I woke up in the middle of the night with a thobbing headache   my whole body hurt (10+) I just cried moaned and paced all day, couldnt sit still, or lay down, thats when it hurt the most. No pain meds helped..I was tired of pacing ans started dancing around the floor an ended up doing zumba. it helped a little , enough for me to relax in the recliner. On the 19th , pain still there. im tired and now frustrated.gave it an (8+) today i wake up im still i pain. I goggled shin pain and this page came up. HELP

 

lillefty's picture
lillefty
Posts: 22
Joined: May 2013

Hi - 

I am sorry you are having so much pain. I am on this site because my mom was diagnosed with stage 4 cancer in April. She had pretty horrible bone pain (in her legs but other places too) from her treatment (6 rounds of carbo/taxol). Traditional pain killers were not only ineffective but made her feel awful in other ways. The one thing that worked for her was medicinal marijuana. She used a vaporizer to take it so that there is no lung damage (she has asthma so smoking it was not a possibility anyway). I don't know where you live and would not suggest you put yourself at risk legally, but it made things bearable for my mom so she was able to complete her treatment and get the NED news in November. I know this is an unconventional suggestion but it helped my mom so much I thought I would suggest it just in case it might help you too. Wishing you the best. 

Lisa 

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