Extreme pain from Taxol anyone else?

Vavoom10

Hello,

I started my first treatment last week of Taxol.  I have been in bed for 5 days.  The pain in my hips, legs, knees, ankles, and feet was so horrible!  I could hardly walk to the bathroom.  I did call my Onc's office and they prescribed vicodin 500 1 or 2 every 4 to 6 hours, which just took the edge off.  The pain is so intense!  Today is the first day (day 5) that is not that bad and I can walk with little pain.  This is very scary to me as joint pain and neuropathy can be permanent from this drug.   I have had 4 treatments of A/C and this was my first Taxol, I have 3 more to go.  This severe pain has made me not want to finish.  Has anyone out there gone through this and made it out ok?

Anonymous

Hi - Sorry you have to deal with this! I also had severe pain during both AC and Taxol - exactly as you described...almost like having been hit by a truck... my Onc attributed it also to the Neulasta. Have you gotten Neulasta or Neupogen?

Vavoom10

Hi LauraGTO,

 Yes, I have had the neulasta shots the day after each infusion, but this pain is not like the one the shot has given me.  This is extreme!

Anonymous

It could be the combo... and don't forget chemo is accumulative. By the time I got to Taxol... OMG - was I aching not only from the Taxol - but also from the Neulasta - the double wammy. I feel so bad for you! Gawd... that pain was so awful. I survived by taking enough Vicadin to just sleep through it (during what should have been waking hours). Your Onc may decrease your next infusion. Have you tried a hot bath? I know... that sounds like a band-aid on a gun shot wound... but it gave me temporary relief. Hang in there.

I hope others will chime in soon and offer some suggestions.

fightinhrd123

Ohh I had it!!  I know it was the taxol because i wasnt doing anything else at the time.  It was HORRIBLE!!!!!  For four days i could  barely walk   The first time I did vicodin, the second time the dr gave me Dilaudid, which took the edge of but knocked me out!!  The only good thing is it did seem to get better each time.  Not much better, but bareable.  I almost changed to weekly, but decided to stick it out. I think it was easier each time because I knew what to expect!!!  I finished chemo in September, and still have pain (mild) and tingling, but I am also on herceptin, so it could be that.  I had chemo first though, and when I was done there was not one cancer left in my breast or nodes, and i think that was from the taxol, so looking back on it i'm glad I stuck it out, but i remember the pain well. 

mizbabygirl4

Yes, I had the pain you describe. It was excruciating for four or five days. My oncologist gave me percocet for the pain, which helped--sometimes more than others. It tended to be the four or five days immediately after the Neulasta shot when the pain was at its worst. Then it would fade. But I made it through and, immediately after my last chemo treatment and its associated pain, it all went away. Just try to hang in there as best you can. I focused on eating--something I wasn't able to do during the AC phase of chemo....

Janet 

Vavoom10

Thanks ladies for your replies.  By the way mizbabygirl I like your Icon, I have that exact same picture in my kitchen!  That is by Norman Rockwell. I love his art.  In May of this year the Detroit Institute of Art is having a showing of Norman Rockwell's art.  My sister and I will be going to see that. 

 I saw my Onc today and he prescribed a high dose of Motrin plus a script of Morphine if the Motrin don't help.  I have never taken Morphine.  I didn't care for the vicodin, gave me a headache and made me nauseated.  Yesterday and today I am much much better and have not had to take any pain medications.  Oh I am so glad that is over.....for now.

One thing I have noticed is that I have some numbness in the heels of my feet.  Has anyone else gotten numbness after a first Taxol infusion?  My Onc said that it seems that I am very sensitive to the Taxol and that is good and bad.  Good because the sensitivity shows that it will really get any of those nasty little microbuggers that may be lurking inside somewhere, but bad because of the numbness.  He said if I get any numbness in my legs on the second infusion we will have to discontinue the treatment and I will be done.  I guess numbness showing up so quickly must not be a good thing.

I also have swelling on the top of my left hand from the very first infusion of AC I got, which was in February of this year.  It calms down then comes back.  I put ice on it most of the day yesterday but it did not help.  My Onc says its phlebitis (hope that I spelled that right) and won't be concerned only if the swelling starts to expand up my wrist or arm.  He said it is a blocked vein and may stay blocked, and is probably getting irritated from the chemo treatments as it goes through my veins.  I don't have a port and don't want one and I do what I can to help the veins heal every week.

I also noticed that I am not really hungry for a few days on Taxol as I was with AC.  I had cravings on AC.  Especially when watching TV if I saw a food advertisement it made me hungry and my husband would run out and get me this or that! 

I will hang in there, this has to be done I know.  

 Thanks for the encourgement!

Carolyn

 PS: just to let you all know Vavoom was a nickname my sister gave me when we were younger, me being around 10.  Vavoom from Felix the Cat, the little eskimo with the big mouth that blew holes in mountains!  Ha!  She said I had a big mouth! LOL. 

Terri42

Hey Vavoom - it sounds like we are the same chemo schedule - I usually post on the Starting Chemo in Feb 2009 thread.  I actually did OK with my AC treatments and Neulasta shots but my first Taxol treatment last Tuesday gave me severe joint pain so I can totally relate!  I was OK on Wednesday then Thurs and Fri were awful - I couldn't sleep my legs were throbbing so bad.  I called the onc and they just told me to take Tylenol PM which I did but it didn't help - I'm going to get Percoset for the next treatment - there is no way I'm going through this again without any drugs!  I'm also hoping it's different the second treatment - it seems like things change from treatment to treatment so I'm hoping this changes for the better!  I also noticed I'm not as hungry - I'm glad the carb cravings are gone - I was starting to pack on some pounds!

Analemma

Ladies, I too had horrible leg pain from the taxol in 2005.  It will sound counterintuitive, but I found that if I could get out and walk, it made it much more bearable.  Not just hobbling around like you feel is the only way to do it, but long strides.  It's like, once you break through the pain barrier, it is much, much easier.  Vicodin is good, too.  I like mine with bourbon.

I had carry over leg pain for a full year after treatment was over, not like during treatment, but enough that I knew it was from taxol.  Gradually it went away.

Curlylocks

Carolyn,

I had the same pain that you are describing with Taxol. I did 4 infusions once every 3 weeks, so had one large dose all at once. The pain was worse from day 3-5. It seemed to always hurt the most at night when I went to lie down to sleep. I suffered greatly with my first dose, oncologist only prescribed tynelol #3 which I might as well have been eating candy, it was totally useless.

My 2nd dose I was given celebrex to take for the first week starting with the morning before infusion and it worked wonderfully. I also had a prescription for dialuid (sp?), it made me physically ill.

I finished chemo in May 2006. I did have some numbness in my face for a few days and my feet hurt, hands and legs swoll up, had a rash on my face that was horrible looking but I have no after affects today thankfully. I did not have to have any shots to keep my blood cell counts up (must have been lucky in that respect) as I had 8 treatments over the course of 6 months.

I do wish you the best in continuing your taxol treatments. Chemo is accumuilative so dont forget to give your body all the rest it needs.

Michele

thenewme

Oh Vavoom-

Me too!!!!  I had my first Taxol treatment April 2 and the bone pain was excruciating for days afterwards!!!  I took Vicodin left over from my mastectomy, and it barely took the edge off.  I'm glad I'm not the only one - apparently it's a common side effect!  Three to go - how many more do you have?

Bethie1

I'm on Taxol now after doing 4 sessions of AC.  Fortunately, I'm feeling common SE such as numbness tingling in feet, a sunburn flush look on my face, but Wed 4/8 (1st Taxol), man was I scared.  I was given max dose of 50 mg of benadryl to counterreact the effects of the Taxol, and I was jitery/shivering inside from my mouth on down.  They noted this in my chart, and will either decrease or eliminate it all together

Vavoom10

Analemma:

Ha Ha Ha, you made me laugh you funny girl!  Like yours with bourbon!  I like that!

Vavoom10

Hello Bethie1, thenewme, curlylocks, Analemma, Terri42, mizbabygirl4, fightinhrd123, and LauraGTO:

I have 2 more Taxol infusions to go!

Thank you all for your replies. It is good to know that I am not alone.  This past Tuesday (4-7) was my second infusion of Taxol.  My Onc advised me to start the Motrin the day before and continue with it until I felt better.  I did start the script of Motrin the day of infusion, took it when I got home and continued with it.  Wednesday I went for my WBC shot and later that night I could feel the pain trying to get me.  Next day it hit me, it was not as severe this time, but severe enough!  I just kept taking the Motrin every 4 hours and it did help, took the edge off.  My husband talked me into trying the Morphine, so I did, and because I got tired of being in pain if I didn't have to be.  The Morphine worked quickly.  I put it in juice.  It is in liquid form and comes with a dropper with measurments.  .10 is what I took.  It worked well taking the pain away from my legs, although I did get a slight headache.  I took it every four hours like it said, but for only one day and night.  I am afraid of becoming dependant on any drug.  It did help though and I am glad I have it.  I will only use it if this becomes too much to bear with the rest of my infusions.

Today, Easter Sunday, I do feel better, though I still have slight pain in my legs and my feet hurt like I been walking on them for whole week non stop!  I just feel mostly aches in my joints now instead of all over leg and muscle pain.  What is up with that? I'd like to know. Why does this make my muscles and bones hurt so?  Splain Lucy!

Anyways.  I have noticed that my bladder seems to be affected as well.  Like I have an infection, but my urine sample showed no bacteria when it was tested.  I had shooting pains in my bladder last night after I went to the bathroom.  Has anyone else experienced this?

I look forward to your replies!

Carolyn

karenn

I am on my 2 of 4 Taxol treatments.  My 3rd is this Tuesday.  I am experiencing the same bone pain in knees, finger joints, and pelvic area, numbness in hands, feet and face (and getting worse..)_ I also had some slight nausea the second treatment, enough to make me miserable.  The first treatment I seemed to recover faster.  This second one the symptoms have held on, which makes sense if its accumulative. Still hoping my 3rd treatment will be a little better.

blessings & best wishes to you.   

~Kateri t

NanaOfTen

Hi,

I am getting my Taxol tx's now. Have had three of them so far. The pain from the Taxol is, indeed, unbearable! For me it seems to get stronger after each tx. So far I have had three, one more to go. My last one, I almost didn't go because I knew what was in store for me.

My doc originally prescribe 750 vicadins to be taken 1 or 2 every 4 to 6 hours. When the pain peaked, I would take 2. It only make me loopy, tired, but did nothing to ease the pain. I still sat there rubbing my joints, muscles, and crying. The second tx, he tried darvocet, that didn't work too well either. Still intesnse pain. The third tx, I was given oxycodone, only 5 mg, but it is enough to take the burn off the pain so I can tolerate it and not feel like I am losing my mind. After the third tx, the pain lasted about a week. 

As for laying in bed, I can relate. A lot of the time when the pain is great, I lie down, trying to relax to ease it. It's hard to get comfy when I am hurting so much and the bed is the only place where I can go and put my body where there will be no pressure on any joints or muscles.

I cannot wait for the fourth to be done.

Then I get 4 tx's of AC ... wonder what those side effects will be like!

This site helps knowing I am not alone with what I am going through. My onc nurse mentioned to me that he usually only gets to treat 'guys' and it will be a new experience for him to treat a lady. He's great, don't get me wrong, but my se's are all new to him in their intensity. He even told me when I started the chemo that I was getting a triple dose, that most of the 'guys' only got 1/3 of what I was getting. I wonder if that has anything to do with the stronger side effects.

Good luck and I hope your new meds help!

Bethie1

Nana of Ten-- you're doing your treatment the exact opposite of me.  I'm on Taxol now, and did AC already.  Can't speak for everyone, but my SE's were common and minimal at best.  I was fatigue, queasy, for the most part.  The taxol is actually wearing me out more than the AC did.  I had 4 of AC and will have 3 more of Taxol. 

Ana--interesting point about getting out and moving!  I got back into my workout routine, was told by med onc to lose weight because after chemo people tend to gain weight and tumors could come back),.  Anyway, once I got done with my 1/2 hr workout on treadmill, the pain in my upper legs was gone!! I didn't have that flulike feeling, or the dull arthritic feeling either, which is all common SE by the way!!

 Hope this helps

jancie

I had my first Taxol infusion last Wednesday.  Last night I started hurting.  This morning I couldn't even move the pain was so severe.  I hurt from head to toe - even my eye sockets were hurting.

I have been taking (2) 500 mg of Lortab every 4 hours for the pain.  Without the Lortab I am almost crying in pain.   I knew I was going to hurt but I didn't expect it to be this bad!

My thumbnails are changing colors and are really sensitive right now.  I have no doubt I will lose those nails in the very least.

All I can say is if you are hurting, don't hesitate to ask for meds.  Nobody should hurt this bad and not have meds on hand for the pain.

Bethie1

Jancie, So sorry sweetie that you're hurting (((HUGS)))).  What exactly is the pain-fatigue, muscle ache, tightness of muscles.  I ask cause I had my 1st taxol  weeks ago, and everything I just typed to ask you what your pain is I had, and now that's gone.  keep taking whatever you need for the pain. The pain hopefully should subside by your next treatment, and n between time I hope you feel a gradual reduction of the muscle tension, and pain.  if not, then say something to th doctor next time.

sorchaj

Lord isn't this stuff terrible! To all of you who have posted here, many comforting hugs.

I just finished my last Taxol. The pain was horrific, but it did pass after a few days. Unfortunately, every kind of pain med I tried gave me severe constipation, which reopened a previously healed fissure. Talk about adding insult to injury. Not only did every joint in my body hurt, but I also felt like had a knife up my a**! I did the last round of Taxol with no pain relief. Wanted to die for a while, but I'm too stubborn to let the pain win.

Vavoom10

Thanks to all who replied.  I have had three taxols and next week will be my last one!  Yippie.

Last week, on the 20th was my third.  I did not go back the next day for the Neulasta shot to raise my WBC.  I wanted to see what effect it would have on the pain, and you know what?  It was not as severe this time.  Oh, I still hurt all over, but it was NOT as bad.  The only thing is, if my WBC is low when I get my blood test this week, they may have to postpone my treatment.  But, last week my WBC was on the "high end" and I think I will be good to go.  HOPEFULLY.

Yes, this chemo is some nasty nasty stuff.  But, I am very glad I did not quit.  This has been very hard, but I am making it through!

Thank you all for your encouragments and testimony!

ChrisC433

Good morning ladies,

 I am a member of the MarchWarrior Princesses!  I started chemo on 3/11.

I have my first DD Taxol next Tuesday.  I went through AC with losts of anti-naussea drugs.  Very tired.  Now I am trying to prepare for Taxol.  What should I have on hand?  Do you get contipated or have loose bowels?  How about pain meds...anyone have suggestions on what worked best.  How about neuropathy?  Anything to help prevent it or meds to take to alieve the pain?

 I appreciate any info that you can provide. I am a firm believer of knowledge is power!

Thanks,

Chris

Husband11

Ask your oncologist about this, but there is research that shows melatonin may significantly reduce the side effects of taxane based therapy.

Here is the abstract from a published work in ASCO in 2007.  I would think if ASCO published it, its not sketchy.

 stract
Effect of melatonin on taxane-induced neuropathy in breast cancer patients
S. Sweany, J. Lafollette, J. Pruemer, M. Swango, M. Clark, A. Wainino and Z. Nahleh

University of Cincinnati, Cincinnati, OH

19640

Background: Neurotoxicity caused by taxane chemotherapies(CT) can be dose limiting and can cause a decrease in quality of life. Melatonin has been evaluated for its use in decreasing adverse reactions of CT. Preclinical data suggests that melatonin has neuroprotective capability. The objective of this study is to determine if melatonin will decrease the incidence and severity of taxane-related neuropathy. Methods: Fifty patients beginning CT for any stage of breast cancer with paclitaxel, albumin-bound paclitaxel, or docetaxel will be enrolled. Patients should have no underlying neuropathy. Melatonin is given at 21 mg at bedtime on Day 1 and continued for 28 days after the last taxane dose. Every 28 days, neuropathy is assessed using the NCI-CTC 3.0 scale and possible side effects of melatonin are evaluated. Quality of life (QOL) is analyzed using the FACT-Taxane QOL assessment. Outcomes analyzed included the incidence and severity of neuropathy, and changes in QOL. Results: Currently 17 patients have been enrolled with 12 having completed taxaneCT and melatonin. Five have withdrawn due to non-medical reasons and were evaluated for toxicities. The mean age is 49 years (range 36-67 years). The end of study FACT-Taxane score was available for 11 of the 12 patients, with an average score of 135 (range 106-168). The average baseline QOL score was 131 (range 99-148). The average change in QOL score was +4. Eleven have completed paclitaxel with an average dose of 862 mg/m2 (range 525-1620 mg/m2). One patient received docetaxel t 450 mg/m2. Five patients self- reported adverse effects including night-time sedation (2), hot flashes (1), headache (1), constipation (1), nail darkening (1), and fatigue (1). Neuropathy distribution was as follows : 50 % (6) of patients had grade 0, 33% (4) grade 1, and 16% (2) grade 2 neuropathy. The mean change in neuropathy score was +0.67. Conclusion: Melatonin appears promising as a neuroprotective agent in patients receiving taxane-based chemotherapy. No patient developed grade 3 or 4 neuropathy compared to historical controls of 22-33%. Fifty percent of patients treated with melatonin while on taxane CT developed no neuropathy, and those who did, had grade 1 or 2 neuropathy.QOL was maintained. Melatonin's neuroprotective effect should be further evaluated.

No significant financial relationships to disclose.

ChrisC433

Thanks for the info.  I'll talk to Onc. about Melatonin.  Any recommendations for bone/joint pain?

Chris

Husband11

My wife Bev has been taking melatonin, and unfortunately I have to report that she is experiencing significant pain.  She had her last docetaxol 11 days ago, and she is still in agony.  Perhaps the melatonin helps with the neuropathy, but it hasn't done anything, or enough, for her body aches.  Its been so bad that she has had to get a prescription for an oxycontin / tylenol blend pills.  The odd thing is, the people at the hospital led us to believe taxotere would likely be easier on her than the FEC, and now that she is experiencing unrelenting pain, that that is rare.  Sounds like a lot of women on here have found taxotere brutally hard.  Hopefully the pain lets up soon and she gets a few good days before the next treatment.

apple

i too suggest movement and activity.  on days when i sit...(desk work and such) the pain is awful.  i make my self move move move.  i work and walk, stretch and clean closets.  it is so much easier to ignore when the body is moving.

(the hydrocodone really helps too)