Taxol Side Effects-Any Input

natly15
natly15 Member Posts: 1,941
edited March 2014 in Breast Cancer #1
I had my first taxol infusion on 12/28. On the 3rd day following my infusion I could barely walk. I had debilitating pain in my lower legs, ankles, feet, arms, wrists,elbows, and hands. I was in bed for 4 days. My legs and hands were weak. During the first half hour of the infusion I had a very restless reaction and the infusion nurse gave me I think adavan, which helped me go to sleep.

I spoke with my onc nurse this past Monday. She was surprised and said that taxol side effects usually happen during the infusion and she wasnt familiar with my SE . She said this is something that is common with arimidex. My onc is on vacation and will be back on Thursday. She'll discuss this with him so we can figure out what to do for the next infusion.

The pain subsided on the 7th day following the infusion. I'm feeling very tired now but happy that ugly pain is gone. No nausea with taxol like I had with a/C and the appetite is back. Not so sure the appetite is a good thing since all I could do was lay in bed and eat. I think I'm consuming more calories than I need right now. I need 3 more taxol infusions.

I've spoke to 2 ladies who had the same SE from taxol and they suggested glucosamine/condroitin, and glutamine.


anyone had these SE with taxol? any suggestions?

Comments

  • carkris
    carkris Member Posts: 4,553 Member
    I get taxol every week and
    I get taxol every week and on the 3ed day i feel flu like get headaches and ache all over. I usuall y spend the weekend in bed. I take advil for other issues and just suck it up but it is not as bad as yours sounds prob because you are on the higher dose less often.
    I have heard glutamine is good for this and have been thinking abut taking it because of GI issues which I heard it is good for as well My doc doesnt have an issue with it but you should check. Also is this a thing the claritin or allegra helps with? the other ladies can weigh in with this. I hope the next one goes better. P,S I get the restless thing too in one leg it is not comfortable, they associate it with the decdron and or benadryl, (sometimes benadryl has the opposite reaction)
  • natly15
    natly15 Member Posts: 1,941
    carkris said:

    I get taxol every week and
    I get taxol every week and on the 3ed day i feel flu like get headaches and ache all over. I usuall y spend the weekend in bed. I take advil for other issues and just suck it up but it is not as bad as yours sounds prob because you are on the higher dose less often.
    I have heard glutamine is good for this and have been thinking abut taking it because of GI issues which I heard it is good for as well My doc doesnt have an issue with it but you should check. Also is this a thing the claritin or allegra helps with? the other ladies can weigh in with this. I hope the next one goes better. P,S I get the restless thing too in one leg it is not comfortable, they associate it with the decdron and or benadryl, (sometimes benadryl has the opposite reaction)

    Carkris I took 2 advil every
    Carkris I took 2 advil every 3 1/2 hours and that is not a good thing to do. I think I'm on the higher dose of taxol, do it every 3 weeks, and I will not take anything till I talk to my onc. I took claritin and it didnt help at all.
  • crselby
    crselby Member Posts: 441
    where is he?
    Ladies, I have not had chemo so I don't know all the procedures. But it seems to me that reactions to first infusions of chemo are... well,... unpredictable. So how can an oncologist leave town and not leave Natly with a substitute onc? For her to have to wait until he returns is unconscionable! Natly, my prayers for you to be as comfortable and safe as possbile until he gets back and can help you!!
  • Rague
    Rague Member Posts: 3,653 Member
    I have my 9th weekly Taxol
    I have my 9th weekly Taxol this afternoon. Have had no pain but I am much tireder/exhausted than I was on A/C. Haven't had any nausea with either of them. Also don't want to eat and nothing tastes at all like it should on Taxol. Can't sleep without pills either.
  • natly15
    natly15 Member Posts: 1,941
    crselby said:

    where is he?
    Ladies, I have not had chemo so I don't know all the procedures. But it seems to me that reactions to first infusions of chemo are... well,... unpredictable. So how can an oncologist leave town and not leave Natly with a substitute onc? For her to have to wait until he returns is unconscionable! Natly, my prayers for you to be as comfortable and safe as possbile until he gets back and can help you!!

    Crselby he does have another
    Crselby he does have another onc covering for him and I saw her the day of the infusion. She discussed side effects with me and said advil would do the trick well it didnt. The side effects had subsided when I spoke with the onc nurse the following Monday, so I guess they will discuss and decide what to do for the next infusion. Thank you so much for your concern and caring. This happened during the New Year Holiday and if I had made an emergency call I'm sure someone would have contacted me. After chemo my brain doesnt always work to my benefit, I probably should have made that emergency call.
  • susie09
    susie09 Member Posts: 2,930
    Rague said:

    I have my 9th weekly Taxol
    I have my 9th weekly Taxol this afternoon. Have had no pain but I am much tireder/exhausted than I was on A/C. Haven't had any nausea with either of them. Also don't want to eat and nothing tastes at all like it should on Taxol. Can't sleep without pills either.

    Sorry Natly
    I am so sorry Natly. I hope that you feel better soon.

    ♠♣ Susie ♠♣
  • mickeymom
    mickeymom Member Posts: 117
    Pretty normal side effects
    I did 4 of A/C followed by 4 of Taxol. I think joint and muscle pain are very common side effects for Taxol. I would be find the first two days after a treatment and then the pain would set in. It only lasted a day and a half for me. (4 days! You poor thing!) I also tried advil, tylenol, aleve, claritin, zyrtec and benedryl. Nothing helped for me. I even tried some leftover pain meds I had from surgery and the pain didn't really stop but I slept alot which helped some. I did find that some leg stretches my physical therapist gave me helped some and leg and foot massage helped too. (I discovered that by accident when I went for a pedicure to cheer myself up!) Hopefully your oncologist will have some other suggestions.

    My oncologist and the nutritionist both suggested glutamine and vitamin b6 during taxol but not for joint/muscle pain but for neuropathy. I had numbing in my fingertips and feet and I don't really know if it helped or not. It didn't take it away but it never got any worse after I started taking it. Have you had your vitamin D levels checked? My nurtritionist suggested extra D for muscle pain, but by the time they tested it and I started taking it i was on my last treatment and I couldn't tell if it made any difference.

    The other thing that made it bad according to my oncologist was that I got a neulasta shot at the end of each taxol treatment. Those shots made my joints hurt during A/C and she thinks it might have made the pain from taxol worse. She talked about moving the shot to another time but never did.

    Hang in there! I hope things go better next time!
  • Kat11
    Kat11 Member Posts: 1,931 Member
    mickeymom said:

    Pretty normal side effects
    I did 4 of A/C followed by 4 of Taxol. I think joint and muscle pain are very common side effects for Taxol. I would be find the first two days after a treatment and then the pain would set in. It only lasted a day and a half for me. (4 days! You poor thing!) I also tried advil, tylenol, aleve, claritin, zyrtec and benedryl. Nothing helped for me. I even tried some leftover pain meds I had from surgery and the pain didn't really stop but I slept alot which helped some. I did find that some leg stretches my physical therapist gave me helped some and leg and foot massage helped too. (I discovered that by accident when I went for a pedicure to cheer myself up!) Hopefully your oncologist will have some other suggestions.

    My oncologist and the nutritionist both suggested glutamine and vitamin b6 during taxol but not for joint/muscle pain but for neuropathy. I had numbing in my fingertips and feet and I don't really know if it helped or not. It didn't take it away but it never got any worse after I started taking it. Have you had your vitamin D levels checked? My nurtritionist suggested extra D for muscle pain, but by the time they tested it and I started taking it i was on my last treatment and I couldn't tell if it made any difference.

    The other thing that made it bad according to my oncologist was that I got a neulasta shot at the end of each taxol treatment. Those shots made my joints hurt during A/C and she thinks it might have made the pain from taxol worse. She talked about moving the shot to another time but never did.

    Hang in there! I hope things go better next time!

    I did 4 rounds AC and then
    I did 4 rounds AC and then 12 rounds Taxol. I finish Taxol in late November. Only resently has the leg pains started and some mouth sores. It like a very late reaction. So one has to wonder if it was the Taxol. I am also doing herceptin, but was told that would not do this.
  • natly15
    natly15 Member Posts: 1,941
    mickeymom said:

    Pretty normal side effects
    I did 4 of A/C followed by 4 of Taxol. I think joint and muscle pain are very common side effects for Taxol. I would be find the first two days after a treatment and then the pain would set in. It only lasted a day and a half for me. (4 days! You poor thing!) I also tried advil, tylenol, aleve, claritin, zyrtec and benedryl. Nothing helped for me. I even tried some leftover pain meds I had from surgery and the pain didn't really stop but I slept alot which helped some. I did find that some leg stretches my physical therapist gave me helped some and leg and foot massage helped too. (I discovered that by accident when I went for a pedicure to cheer myself up!) Hopefully your oncologist will have some other suggestions.

    My oncologist and the nutritionist both suggested glutamine and vitamin b6 during taxol but not for joint/muscle pain but for neuropathy. I had numbing in my fingertips and feet and I don't really know if it helped or not. It didn't take it away but it never got any worse after I started taking it. Have you had your vitamin D levels checked? My nurtritionist suggested extra D for muscle pain, but by the time they tested it and I started taking it i was on my last treatment and I couldn't tell if it made any difference.

    The other thing that made it bad according to my oncologist was that I got a neulasta shot at the end of each taxol treatment. Those shots made my joints hurt during A/C and she thinks it might have made the pain from taxol worse. She talked about moving the shot to another time but never did.

    Hang in there! I hope things go better next time!

    Great Info Mickeymom---I
    Great Info Mickeymom---I will bring up the B6 and glutamine to my onc. I have a read out and will check my D levels. I get neulasta but never had pain after A/C.
  • kathyDDD
    kathyDDD Member Posts: 34
    I had the same reaction
    I originally had my first Taxol with Neulasta after three weeks ago. I have never experienced such pain in my life! I had to leave school (I am a teacher) and had 6 horrible days of head to toe pain. I spoke to my oncologist and he said another regimen instead of a megadose every 3 weeks, is a smaller dose every week. He said the smaller dose would be more easily accepted by the body. Also, with going every week, the Neulasta shot is not needed. The Neulasta also contributes to the bone/muscle/body pain. Who knew? I had my second treatment yesterday on the smaller dose. I bowled last night in my league and have no pain this morning. I know the bad days usually start on Day 3, so at least that will be Saturday and Sunday while I am home. Hopefully, now that we have changed the regimen, the bad days won't be so bad, but I have oxycodone if the pain gets really bad. Ask your onc if you can do the weekly regimen. I'm really surprised that your nurse was not familiar with the side effects. I know quite a few people have had the same thing happen. Hang in there and hopefully your onc can get a handle on things. Good luck and keep pushing them to help you find the right combination for you.

    Take Care,
    Kathy
  • mimivac
    mimivac Member Posts: 2,143
    Taxol
    Natly, I had Taxotere, but pain in the joints is a SE I have heard of with Taxol. I definitely had hand and leg weakness with Taxotere, which is in the same class of drugs as Taxol. I couldn't open bottles and I became extremely clumsy with my hands, dropping things all the time. I remember one time trying to make breakfast and feeling my legs shake just from standing up. I didn't have these SEs with every treatment, so maybe yours will lessen with time. I hope so. I would definitely ask about glucosamine. Hang in there, Natly.

    Mimi
  • Jeanne D
    Jeanne D Member Posts: 1,867
    mimivac said:

    Taxol
    Natly, I had Taxotere, but pain in the joints is a SE I have heard of with Taxol. I definitely had hand and leg weakness with Taxotere, which is in the same class of drugs as Taxol. I couldn't open bottles and I became extremely clumsy with my hands, dropping things all the time. I remember one time trying to make breakfast and feeling my legs shake just from standing up. I didn't have these SEs with every treatment, so maybe yours will lessen with time. I hope so. I would definitely ask about glucosamine. Hang in there, Natly.

    Mimi

    Natly ♥
    I am so sorry that you are having these problems with Taxol. Hopefully, something that someone who has had it says will help you out. I didn't take it, so, I can't fully understand what you are going thru. But, I am praying that it will get better for you!

    Love, Jeanne ♥
  • natly15
    natly15 Member Posts: 1,941
    Jeanne D said:

    Natly ♥
    I am so sorry that you are having these problems with Taxol. Hopefully, something that someone who has had it says will help you out. I didn't take it, so, I can't fully understand what you are going thru. But, I am praying that it will get better for you!

    Love, Jeanne ♥

    Thank you for all your
    Thank you for all your support. I will definintely discuss B6 and glutamine with my onc. Cant tell you how much all of your input means to me. Thank you so much each of you.
  • ppurdin
    ppurdin Member Posts: 1,181
    taxol
    Hi,I don,t know if I am a good one to answer this or not.I was alergic to this drug and they stopped my treatments.With first treatment I had probley about every side effect you could think of.One of them I hurt in my joints so bad I could barley walk for 4 days.The second treatment 8 days later I broke out in hives all over my body.I went to the emergency room.I don,t want to scare you I am sure yours won,t be this bad.But I would not let them treat me like its the norm.If you are hurting that bad and meds. don,t help they need to do more for you.Good luck.Love and prayers.(Pat).