Need help considering stoping TAXOL

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vered
vered Member Posts: 9
edited June 2014 in Complementary and Holistic Medicine and Treatment

Hi all,

I had one Taxol treatment after 4 AC, the AC was relatively ok, but Taxol was very difficult. I had triple treatment, and the side effects attacked me very badly. Excruciating pain in the legs and throughout the body Numbness in my fingers and toes, rash, hoarseness and coughing. I consulted with my oncologist and he said that apparently it allergy to Taxol ,and he is not  sure I should continue. Because I've got Estrogen Receptor positive, I'm not sure what to do, since new studies show that Taxol is not effective on my type. I'd love to get your advice Thanks in advance 

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    I had similar SEs from taxotere. As far as I understand the taxanes often trigger some sort of allergic response. What I did was take anti-inflammatories for the body aches. We also extended the steroids for an extra day after subsequent infusions and that helped a lot.

    I am surprised that your onc would consider stopping the treatment, but your SEs may be more severe than mine were. It eventually all cleared up, but it took 3-4 months after last chemo.

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited April 2013

    Taxol gave me pneumonitis and I had to stop it. Watch that cough...



    Jenn

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited April 2013

    My onc stopped my taxol after two dose dense infusions. My feet became very numb and have not improved in the last 2 1/2 years.  I got perifferal neuropathy from it and that is difficult it is like my feet and toes are being electrocuted with random jolts.  Be sure to check this out thoroughly perhaps with a second opinion before risking lifelong side effects.

    Good wishes to you.

    Ginger  

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  • vered
    vered Member Posts: 9
    edited April 2013

    thanks allot ginger , it was very useful info ,hope you will be better soon:)

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Ugh! Ginger, that sounds really tiring and annoying to deal with. I am sorry.

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  • vered
    vered Member Posts: 9
    edited April 2013

    http://www.nejm.org/doi/pdf/10.1056/NEJMoa071167

    thanks allot  ladies you all should read this research regarding taxol effectivity

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  • Rose_d
    Rose_d Member Posts: 144
    edited April 2013

    Vered,

    I didn't have exactly the same reaction you did, but did have a nasty rash after my first taxol treatment.  My doc considered switching me to another drug or stopping it altogether, but decided to give it another try.  She upped my steroid treatment and we went for it.  Didn't have the rash again thank goodness (nothing like being bald, sick AND having a rash all over my body!).

    I did get some numbness in my fingers and toes that increased with each of the 4 treatments but resolved pretty quickly after I stopped. 

    After being excited at the prospect of finishing chemo early, I then panicked at not getting the full treatment they thought I should have.  In the end, I was glad to be able to finish as planned.

    Best of luck to you.

    Rose

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  • dltnhm
    dltnhm Member Posts: 873
    edited April 2013

    What reason does your MO give for doing the DD infusions rather than the 12 weekly infusions?

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  • beth1965
    beth1965 Member Posts: 455
    edited April 2013

    vered- i used ice mittens and ice slippers that were supplies at the chemo place. It really helped me alot -you just change them throughout the treatment if they are not cold still. Nurses will do this for you

    I also had really really bad SE from the taxol I would literally cry trying to get upstairs to bed sometimes it hurt like crazy bad. Pain in my legs my sternum really bad lungs were shot. I was taking neuoprogen shots which i was told can make it worse are you?

    My doctor said why take the chance what if it is doing something for you-you need to give it everything you have got when fighting Cancer. It will be over before you know it and your body will start to heal. I am glad i lasted through it- i would like to never ever have to do it again it was horrible.

    If you decide to keep doing it just make sure you have very regular check-ups so they can keep a close eye on you.

    Hugs to you

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    vered~~Have they considered giving you weekly Taxol instead of dose dense? It's much easier. It might be worth a try before you stop it altogether.



    Blessings

    Paula

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    I should have added that taking vitamin B6 (100mg 2X daily) and L-Glutamine (30grams daily) mixed in juice helps greatly with neuropathy.



    I wish you the best.



    Paula

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    I agree with Paula, look at the studies about neuropathy and L-glutamine. I took it throughout taxol and had no problems. The ice on fingers and toes doesn't so much help with neuropathy as it does with nail beds lifting, but that seems to be more of a thing with Taxotere.

    Apparently if you take L-glutamine even after taxol it can help repair nerve damage.

    I agree iwth another poster:  DD is hard on our bodies.  I am also ER+ but wanted everything I could take to get rid of any lingering cells.  All it takes is one.

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  • Husband11
    Husband11 Member Posts: 2,264
    edited April 2013

    Some research indicated that melatonin reduced neuropathy caused by taxols.

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2013

    I did not have taxol, but did taxotere, also used L-glutamine and B6. Ended up with permanent peripheral neuropathy in my fingers - only took 3 of the 4 planned cycles of TC. Tingling in teeth & fingers started with first dose, MO said it would get better, it did not. Also had recurrence within 6 months, and I have Er+ cancer. Because of the neuropathy, I am not eligible for any further taxane treatment. Wish I could be more optimistic for you, but you need to listen to your body, do what feels right for YOU. If the tingling goes away quickly, before the next dose, it seems reasonable to go ahead with it, maybe at reduced dose. I would strongly suggest you consider the hormonal treatments if you are Er+ as they are probably better than chemo for some of those cancers, although this is not true for all.

    I also had very rough time with other SEs of pain, etc that you have described. I still have pain in my arms & chest, along with weakness in my upper extremeties. Taxanes often affect lower extremities more than upper, but in my case, it was the reverse.

    Best wishes.

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2013

    Vered

    That study is from 07? I cant read it too well. Am on my phone. I dont know your dx. But i went to three MO. They all recommend same tx. I didweekly. You might that

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited April 2013

    I should add that my Onc stopped my taxol when I came in telling her how I found out my feet were numb. I had on a pair of Ugg slipper slides. My husbnad sqaid what is that sticking out of your slipper? He started pulling on it and found a thin electrical cord, pulled my slipper off and there was an entire book light! I had been walking on my book light and could not feel it.  I had, had tingling previously but nothing this extreme, or maybe I did and just couldnt feel it.  This numbness is a swerious palady, I am very unsteady on my feet and especially if I am trying to go up or down stairs. I have fallen at least once a month and NEVER did before.  

    Be sure your onc has accurate info about your side effects, write incidences down so you give good info.   The numbness combined with neuropathy is serious, the pain of neuropathy is serious pain. MY hands tingle too but I havent gotten an actual shocky feeling there and hope I dont. 

    I had treatment in 2010 and dont know if they have changed DD to weekly or not. 

    Good luck to you all.    

    Ginger

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  • Husband11
    Husband11 Member Posts: 2,264
    edited April 2013

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883241/

    Melatonin, a Promising Role in Taxane-Related Neuropathy




    1Karmanos Cancer Institute, Division of Hematology-Oncology, Wayne State University 4100 John R, 4HWCRC, Detroit, MI 48201, USA

    2University of Cincinnati College of Pharmacy, 3225 Eden Avenue, Cincinnati, OH 45267-0004, USA

    3Grady Health System, 80 Jesse Hill Jr. Drive, Atlanta, GA 30303, USA

    4MD Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030-4009, USA




     


    Copyright © 2010 the author(s), publisher and licensee Libertas Academica Ltd.

    This is an open access article. Unrestricted non-commercial use is permitted provided the original work is properly cited.





    This article has been cited by other articles in PMC.



     


    Abstract


    Purpose:

    Melatonin has neuroprotective effects in animal studies and has been suggested to decrease adverse reactions of chemotherapy including neuropathy. This pilot trial aimed at assessing whether melatonin, given during taxane chemotherapy for breast cancer, will decrease the incidence and/or severity of neuropathy.


    Methods:

    Twenty two consecutive patients beginning chemotherapy for breast cancer with paclitaxel, or docetaxel were enrolled. Patients received melatonin 21 mg daily at bedtime. Incidence and severity of neuropathy were assessed using neurological examinations, toxicity assessment per NCI-CTC 3.0 scale and FACT-Taxane quality of life questionnaire.


    Results:

    Neuropathy was seen in 45% (n = 10) of patients, 23% (n = 6) grade 1 and 22% (n = 5) Grade 2 neuropathy. No grade 3 neuropathies were reported. The majority (55%) of all patients reported no neuropathy. Compliance with melatonin (>60% of dose) was seen in most patients (86%) No patient reported daytime sedation. The median FACT-Taxane quality of life end of study score was 137, with only a 0.5 median decline from baseline.


    Conclusion:

    Patients receiving melatonin during taxane chemotherapy had a reduced incidence of neuropathy. Melatonin may be useful in the prevention or reduction of taxane-induced neuropathy and in maintaining quality of life. Larger trials are warranted to further explore the role of melatonin in neuropathy treatment and prevention.



    Keywords: neuropathy, taxane, melatonin, quality of life

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited April 2013

    I would have been happy to take melatonin during chemo, had I know it would help.  Of interest is that the tingling started during Adriamycin and Cytoxin before I had taxol. My onc said it was possible for it to start then. A "Fellow" from Venuzuala (sp)  had said it wasn't possible and I felt bad because I knew it was there when I reported it.  WHen I was taken off of Taxol I was told that most of my benefit was already received.  

    I wonder if taking a lot of melatonin now would decrease the neuropathy? It isn't improving at all, never has.

    Thanks for posting Timothy

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