Hearing Issues Caused by TAXOL Chemo

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t9jorda
t9jorda Member Posts: 39
edited April 2015 in Chemotherapy - Before, During, and After

Background
In the fall of 2006 immediately after my first Taxol treatment, my whole world became too loud. I could not stand the radio or TV being on, the noise in shopping malls bothered me, vehicle tire noise made me tense up, going into a coffee shop became a challenge and so on. I reported this adverse effect to the Dr.'s treating me, and they were hopeful that this hypersensitivity to sound would go away once treatment was over. It never did.

Returning to work
After trying several times to return to work, I was unable to stand all the noise - to the point that it effected my balance, and I was throwing up daily in the bathroom. That was not a good way to live. I again consulted the chemo Dr.'s and they said, yes, this was an adverse effect, that they would note it in their Clinical Trial, that there was nothing they could do to help me as they had "lives to save".

Medical Leave from Work
Wow, if you think throwing up daily was bad, then I got shingles, as my poor body was so stressed from coping with my noisy world. My family Dr. pulled me from work in the fall of 2012. My ears were so painful at this point that the muscles in my face and neck felt like rocks as they were constricted so hard... it also gave me nerve pain in my face, TMJ etc. Not a happy little camper at this point. I looked like shit, felt like shit, and was pretty frustrated that a chemo drug would save my life, but make me feel really bad.

2013 Diagnosed Finally!!!
Hyperacusis caused by Taxol, confirmed by an Ear Nose and Throat Specialist as well as an Audiologist.

Where I am today 2015
Wearing sound generators to buffer noise, have tried several anxiety meds which actually made the hearing "hurt" more, practicing yoga, meditation, doing massage, physio, braces on my teeth were just removed, etc. and trying to find a joyful way to live with what is. I still experience extreme hearing pain (hear too well) as a result of the Taxol damage, and I have been told I will likely never recover nor be able to return to work.


BEWONDERFUL

Last week was my birthday and while out for a walk, I found a piece of paper hanging from a tree that said "BEWONDERFUL". That will be my goal no matter what! I share this with all of you, as I suspect there are more instances of severe hearing issues resulting from the Chemo treatments. If the Dr.'s had helped from the first time I reported it, and took it seriously, I suspect that my outcome would have been resolved much quicker without such a severe down spiral.

May life be good to you all. Smile at the day that you are about to enjoy, as I still feel so blessed by every moment I have.

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Comments

  • NATSGSG
    NATSGSG Member Posts: 231
    edited April 2015

    Dear t9jorda, 

    So so sorry you had to go through this.. I hope since this experience,  your life has improved further... might I asked if it was just taxol or was your chemo a combined one? 

    I shall be having combined taxol + herceptin this upcoming week. It is going to be a weekly 13 weeks treatment.  If after one treatment,  I cant stand it, I will stop (my decision and my oncologist has to respect it ) 

    If however I can tolerate it,  I may do it for as long as I feel comfortable.  I agree with you that this is a highly toxic drug,  but it seems that in combination with herceptin,  it's more beneficial synergistically. 

    SO I am curious if yours was,  and if you wish to reply in private,  it's fine with me.  

    I greatly appreciate you sharing your experience here. 

    May the recovery force be with you

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  • t9jorda
    t9jorda Member Posts: 39
    edited April 2015

    Hi Nat, you asked some really good questions. I am triple negative stage 2A, so I had 4 doses of AC followed by 4 doses of Taxol in 2006, as part of clinical trial B-38 http://www.nsabp.pitt.edu/B-38.asp . It was the first dose of Taxol that caused the issues, as a result the 2nd, 3rd, and 4th treatments the Dr.'s reduced the quantity given to me by 25% of the original dose, which was more tolerable. I had dose dense treatments every two weeks. I tried to retain an image in my head that given Taxol was extracted from a YEW tree, likely from British Columbia, Canada where I originally grew up - that I was actually being given one of "natures" natural products to heal me. I also imagined while getting infused that the people I loved the most, were holding my hands and we were waltzing together to some very beautiful music. This gave me so much strength.

    The choices we make thru treatment are our own personal individual decisions. Knowledge is power, do your research, then make your decision and be strong. The choices we make are hard and frankly shitty. Ask yourself if you can live with the decision you make, even if it goes south.... and if you can, then it is the right decision for you. We loose so much power and control of our being while we go thru treatments, but no one, absolutely no one, can take away your decision. You own it.

    Re: private memos so sorry, I don't do those... as the first time I did it, some weirdo sent me inappropriate messages that I suspected was a male sexual predator from a middle eastern country, yucky stuff... funny now, not so funny then.

    Many blessings to you, you will be in my thoughts frequently over the next several weeks. Take 5 minutes a day to enjoy the small happy moments that you can find, like the smell of toast, your favorite song, or the hug of a loved one... make sure you find at least 5 minutes of joy a day, it will help carry you .... to places that don't hurt, and to hope that life will be long and happy.

    Hugs, tlj.



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  • NATSGSG
    NATSGSG Member Posts: 231
    edited April 2015


    Thanks for gettng back...I am planning to learn a string musical instrument throughout this therapy as a therapy itself　＠！＠　Ｈｏｐｅ　ｙｏｕ　ａｎｄ　ｙｏｕｒ　ｆａｍｉｌｙ　ｈａｖｅ　ａ　ｗｏｎｄｅｒｆｕｌ　ｌｉｆｅ　ｅｖｅｒｙｄａｙ．．．：－））

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