post taxotere pain

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planetstrands
planetstrands Member Posts: 7
edited March 2014 in Breast Cancer #1
hi all. i am 2 years + my last taxotere treatment and i have relentless limb pain, which is worse in my legs. i am on the strongest vicodin available.. about 4 doses per day. i was on neurotin, and am now trying cymbalta, which i have to give a bit more time, to see if it will work. i am a dancer and doing pt for a hip resurfacing, but exercise does not really help. i often get sore on top of the constant aching pain (which feels like growing pains)... and it's not typical post-workout soreness... it is much worse than that. this started halfway through my taxotere treatments. i am also suffering tremendous fatigue. my oncologist tells me that he has not seen anyone get over this at this point. has anyone out there experienced relief 2 yrs. or more beyond treatment? it is debilitating and i want to be free of it!!! thanks! best, adele

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  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
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    Adele,
    I'm still a work-in-process on Taxol. I get BAD joint pain days 3,4. I find that SUPER hydration with water(going to the bathroom ALOT), along with Vitamin B-6 (nerves) helps ALOT. Don't know if this will help. but worth trying. Ask your Onc first...this vitamin can also cause hot flashes!!!!
    Many hugs and prayers,
    Kathi
  • planetstrands
    planetstrands Member Posts: 7
    #3
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    KathiM said:

    Adele,
    I'm still a work-in-process on Taxol. I get BAD joint pain days 3,4. I find that SUPER hydration with water(going to the bathroom ALOT), along with Vitamin B-6 (nerves) helps ALOT. Don't know if this will help. but worth trying. Ask your Onc first...this vitamin can also cause hot flashes!!!!
    Many hugs and prayers,
    Kathi

    thanks, kathy! i will give it a try. hugs & prayers to you, too. you are almost there, no? adele
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    planetstrands said:

    thanks, kathy! i will give it a try. hugs & prayers to you, too. you are almost there, no? adele

    Yup, my LAST treatment is Wednesday. Then a month off, then 33 radiation treats (May). I had colon cancer first, finished with surgery, etc just in time to have lumpectomy for breast. Busy year and a half!
    All the best,
    Kathi
  • jamjar62
    jamjar62 Member Posts: 135
    #5
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    Hey Adele,

    I will be 3 years post-chemo on May 22nd. I had 4 round of Taxotere. I still experience pain in my ankles and hips as well as my lower back. The hip pain comes and goes but the ankle pain and back pain are almost constant. I can't wear all my beautiful sandals because it just hurts too much! Dang it! And my second toe on my left foot feels like it is on fire most of the time. I've often wondered if removal with a sharp pair of pliers would solve the problem (and I am NOT joking about this).

    I don't actually know whether to blame the Taxotere or the Tamoxifen I am currently taking.

    I just keep hoping that one day it will go away. I am only 43 and I hate to think that I will spend the next however many years hobbling around like a little old lady. If I think about it too much, it makes me mad/sad but I keep holding onto that hope.

    Blessings,
    Karen
  • LesleyH
    LesleyH Member Posts: 370
    #6
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    Like Karen, I don't know whether to blame the Taxol or the Tamoxifen for the tingling, numbness and pain. I thought it was getting better until I started the Tamoxifen. Anyhow, I started taking lipoic acid and it really has helped the numbness and tingling. I am still struggling with the joint pain in my shoulders and hips.

    No fatigue, thank goodness. I walk 5 miles every day, rain, shine or snow.

    Lesley
  • 24242
    24242 Member Posts: 1,398
    #7
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    My history with pain had been a very long until finally after 3 years I had enough. Doctors were stuck on anxiety that female cancer patients suffer and neglected to look at the causes that were there. Side effects from treatments were my demise and it is known that percentage of population suffer from such a sensativity. Doctors suggested that I would always be disabled and possibly unable to work or maybe hold down a part time job. I found this difficult to accept and don't think I ever did.
    Finally after feeling like I had no life to live I finally convinced my doctor to send me back to cancer clinic to a pain specialist. I too did the gammet of pain and inflamation drugs. I tell people that I had one disease cancer and now have had to learn to cope with many diseases the direct result of treating my cancer. I had side effects from surgery that I didn't realize were even there. Trauma to the body is a big issue that the medical community is just starting to address because of conditions that can't be diagnosed.
    I too realized I had a stake in this life of mine and refused to give up and set out searching too for natural therapies that were out there.
    I am now over 5 years out of the unbearable pain and now can live with what I am faced with daily. I was on methadone for years and it turned out to be the drug with the least side affects or at least less side effects I suffered with than anything else I took. I soon found that exercise could help instead of being apart of the pain. I am now in better shape than I have ever been in doing very physical laboured work.
    Keep after them and don't give up we all deserve so much more.
    Tara
  • planetstrands
    planetstrands Member Posts: 7
    #8
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    24242 said:

    My history with pain had been a very long until finally after 3 years I had enough. Doctors were stuck on anxiety that female cancer patients suffer and neglected to look at the causes that were there. Side effects from treatments were my demise and it is known that percentage of population suffer from such a sensativity. Doctors suggested that I would always be disabled and possibly unable to work or maybe hold down a part time job. I found this difficult to accept and don't think I ever did.
    Finally after feeling like I had no life to live I finally convinced my doctor to send me back to cancer clinic to a pain specialist. I too did the gammet of pain and inflamation drugs. I tell people that I had one disease cancer and now have had to learn to cope with many diseases the direct result of treating my cancer. I had side effects from surgery that I didn't realize were even there. Trauma to the body is a big issue that the medical community is just starting to address because of conditions that can't be diagnosed.
    I too realized I had a stake in this life of mine and refused to give up and set out searching too for natural therapies that were out there.
    I am now over 5 years out of the unbearable pain and now can live with what I am faced with daily. I was on methadone for years and it turned out to be the drug with the least side affects or at least less side effects I suffered with than anything else I took. I soon found that exercise could help instead of being apart of the pain. I am now in better shape than I have ever been in doing very physical laboured work.
    Keep after them and don't give up we all deserve so much more.
    Tara

    wow, tara, what an incredible story. so methadone was what got you over the hump??? are you taking anything now? so glad to here that exercise is now helping. we do deserve so much more. we must keep making noise about this. all the best,
    adele
  • 24242
    24242 Member Posts: 1,398
    #9
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    planetstrands said:

    wow, tara, what an incredible story. so methadone was what got you over the hump??? are you taking anything now? so glad to here that exercise is now helping. we do deserve so much more. we must keep making noise about this. all the best,
    adele

    For those who are reading this board mostly. After years of amytriptoline and methoadone my pain was finally controlled the pain triggers burned into my brain finally dulled. I have taken a natural product as well all this time and finally went off everything including natural product just the past year an half or so. I did this just to see if anything would come back to bite me and slowly some of the pain began to return but nothing like I had experienced in the past. Yes I have had the odd bout of pain and irritable bowl fibro myalgia symptoms return but nothing like had before.
    I always have to laugh about how stress is a real trigger and cause for allot of my pain yet stress has not subsided just how I face and deal with it and I haven't gone backwards at all. MY it was stress from the disease, then it was stress from anxiety, then it was stress from being in pain then it was stress from getting sick ever I had to wonder when it stops and actual diagnosing began. Can't help but feel like this since diagnosing my cancer wasn't the first thing they wanted to do hence stage 3 and lymph involvement.
    My only hope is that others will realize that pain causes so many other things and if not addressed can carry on and be our demise. My own pain specialist admitted that women often feel they are a bother to doctors if they complain so often goes unaddressed. We are always able to chalk up sickness and pain to something we have been doing!!
    Being good to ourselves is a big step,
    Tara
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
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    24242 said:

    For those who are reading this board mostly. After years of amytriptoline and methoadone my pain was finally controlled the pain triggers burned into my brain finally dulled. I have taken a natural product as well all this time and finally went off everything including natural product just the past year an half or so. I did this just to see if anything would come back to bite me and slowly some of the pain began to return but nothing like I had experienced in the past. Yes I have had the odd bout of pain and irritable bowl fibro myalgia symptoms return but nothing like had before.
    I always have to laugh about how stress is a real trigger and cause for allot of my pain yet stress has not subsided just how I face and deal with it and I haven't gone backwards at all. MY it was stress from the disease, then it was stress from anxiety, then it was stress from being in pain then it was stress from getting sick ever I had to wonder when it stops and actual diagnosing began. Can't help but feel like this since diagnosing my cancer wasn't the first thing they wanted to do hence stage 3 and lymph involvement.
    My only hope is that others will realize that pain causes so many other things and if not addressed can carry on and be our demise. My own pain specialist admitted that women often feel they are a bother to doctors if they complain so often goes unaddressed. We are always able to chalk up sickness and pain to something we have been doing!!
    Being good to ourselves is a big step,
    Tara

    I just watched a PBS show on this last night. Dealing with pain handling and mind set and how it affects not only during cancer treatment, but after and for anyone else (heart patients, etc). Studies currently being done all over the country for this. Duke, Scripps, MD Anderson.
    Also, at Duke, first year residents are put through a training on how to better the patient/doctor relationship. Stop looking at the DISEASE the PATIENT has, but look at the PATIENT that has this DISEASE. Maybe there is hope!
    Kathi
  • planetstrands
    planetstrands Member Posts: 7
    #11
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    just wanted to let everyone know that i am on lyrica (an anti-convulsant), and it is helping my pain tremendously!!! neurontin worked for a while, but then stopped being effective. hooray!!! i improved with the first dose.

    adele

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