Looking for people whose tear ducts were ruined by taxotere

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pamcb3
pamcb3 Member Posts: 44

hi,  my name is Pam and I am almost 4 years out of treatment for stage 3 invasive ductal carcinoma. I had a lot of hurdles along the way. I made a promise to myself when I started that I would get back everything cancer took from me and I wouldn't let it define me as a person. Well, as I have dealt with the recovery process there is one side effect I fear will be a forever battle. My tear ducts were scar tissued shut I have severe dry eye and my body doesn't make good tears anymore.i have had 6 operations to install "Jones tubes" for tear ducts I use restasis twice a day. Unfortunately in some people (me) the Jones tubes tend to migrate or shift out of place every 6 or 8 months I have 2 fabulous specialists and will soon be seeing a third to try and at least help my dry eye. Both of the specialists agree that this is a known side effect from taxotere and if the drug company would instruct the oncologists to have the patients go to and eye doctor while the tearing is happening it could most likely be prevented by irrigating the tear ducts or putting stents in to prevent the build up of scar tissue. i have legal counsel that believes the only way to make a change so this doesn't happen to anyone else is a class action lawsuit. If anyone is interested please message me. Or email me at pamcb3@hotmail.com

     Thank you! Pam❤️

Comments

  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
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    Tear Duct Damage and Taxotere

    I just celebrated my 5 year anniversary of being in remission. I was diagnosed with Stage IIa triple negative breast cancer. I had a mastectomy and 4 rounds of A/C as well as 12 rounds of Taxotere. My eyes starting watering during the Taxotere rounds. All my oncologist said was that it would go away. When I reached the 3 year mark my eyes were STILL watering. 2 ophthalmologists said "oh this is a well known side effect of Taxotere" and offered no solutions. My optometrist did the most thorough exam ever and said my puncta were blocked. He referred me to an oculofacial plastic and reconstructive surgeon. Her post-doctoral fellowship was done at Johns Hopkins Hospital. Apparently at Hopkins the Oncology and Opthamology Departments work together closely so as to prevent the problems of which you and I are complaining. She attempted a surgery but it was unsuccessful. Now here I am at 5 years and my eyes continue to water like a faucet. It may sound like nothing to most people but I can assure you that constantly watery eyes is no joke. 

    IRENE

  • pamcb3
    pamcb3 Member Posts: 44
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    Tear Duct Damage and Taxotere

    I just celebrated my 5 year anniversary of being in remission. I was diagnosed with Stage IIa triple negative breast cancer. I had a mastectomy and 4 rounds of A/C as well as 12 rounds of Taxotere. My eyes starting watering during the Taxotere rounds. All my oncologist said was that it would go away. When I reached the 3 year mark my eyes were STILL watering. 2 ophthalmologists said "oh this is a well known side effect of Taxotere" and offered no solutions. My optometrist did the most thorough exam ever and said my puncta were blocked. He referred me to an oculofacial plastic and reconstructive surgeon. Her post-doctoral fellowship was done at Johns Hopkins Hospital. Apparently at Hopkins the Oncology and Opthamology Departments work together closely so as to prevent the problems of which you and I are complaining. She attempted a surgery but it was unsuccessful. Now here I am at 5 years and my eyes continue to water like a faucet. It may sound like nothing to most people but I can assure you that constantly watery eyes is no joke. 

    IRENE

    Would you be willing to join

    Would you be willing to join me to make a change? The only thing required would be your permission and most likely your medical records.  My attorney believes we have a very good case. If I just settle personally the company would put a gag order on me and not change the information and recommendations for the oncologists. This is purely directed at the drug companies negligence. It is not the doctors fault. I love my oncologist as well and trust him with my life! Let's make a difference for somebody else!

                                      Have a Fabulos day!

  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
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    pamcb3 said:

    Would you be willing to join

    Would you be willing to join me to make a change? The only thing required would be your permission and most likely your medical records.  My attorney believes we have a very good case. If I just settle personally the company would put a gag order on me and not change the information and recommendations for the oncologists. This is purely directed at the drug companies negligence. It is not the doctors fault. I love my oncologist as well and trust him with my life! Let's make a difference for somebody else!

                                      Have a Fabulos day!

    Joining a Lawsuit


    Being an attorney myself I know all too well what is involved in complex medically based litigation. As such, I am not willing to become a named plaintiff in your litigation. I also believe there are other avenues for change that do not involve the courts. Lobbying the drug companies and the FDA is the first idea that comes to mind.

    IRENE

  • pamcb3
    pamcb3 Member Posts: 44
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    Joining a Lawsuit


    Being an attorney myself I know all too well what is involved in complex medically based litigation. As such, I am not willing to become a named plaintiff in your litigation. I also believe there are other avenues for change that do not involve the courts. Lobbying the drug companies and the FDA is the first idea that comes to mind.

    IRENE

    So sorry you feel this way. I

    So sorry you feel this way. I need to try and turn this negative into a positive. My attorney is a breast cancer survivor herself And I am grateful for her help. If you change your mind let me know! Congratulations on your 5 years! Stay well and celebrate! :)

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    pamcb3 said:

    So sorry you feel this way. I

    So sorry you feel this way. I need to try and turn this negative into a positive. My attorney is a breast cancer survivor herself And I am grateful for her help. If you change your mind let me know! Congratulations on your 5 years! Stay well and celebrate! :)

    Well, do you have hair?

    Pam, at least insurance companies will pay for visits to the ophthalmologist and surgeries (I guess that doesn't help if it can't be fixed).  I, and MANY (too many) other women did not get our hair back (or only some of it) after Taxotere - which is another known side effect which we were not warned about.  No insurance will pay for our "fixes" (i.e., wigs, hair systems) because they are considered cosmetic.      

    Neuropathy is another known permanent side effect from Taxotere.  Again, insurance will pay for visits to the neurologist (doesn't mean they can fix it, tho).  I was warned about the possibility of neuropathy.  That didn't happen.  I MAY have some issues with tearing, but not enough to warrant any medical interventions.

     I belong to a group of 80+ women (and growing) from all over the world and we're pretty organized and pretty smart.  We've had a conference call with the FDA in April who said they would investigate, but no results - at least not yet.   Many of us are participating in an investigation by a law firm regarding a class action suit, which will likely never get off the ground.   It is very frustrating.  I still doubt anything will ever come to fruition in my lifetime, but the squeaky wheel and all . ..

    Good luck in your efforts.  Even if I'd known about this potential side effect, I think I would have proceeded with Taxotere, but I would have known that this was possible.  I probably would have figured it was worth the risk and would never happen to me (it probably was as I'm almost 5 years NED now).   You can check out our website at aheadofourtme.org. 

    Suzanne

     

     

  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
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    Well, do you have hair?

    Pam, at least insurance companies will pay for visits to the ophthalmologist and surgeries (I guess that doesn't help if it can't be fixed).  I, and MANY (too many) other women did not get our hair back (or only some of it) after Taxotere - which is another known side effect which we were not warned about.  No insurance will pay for our "fixes" (i.e., wigs, hair systems) because they are considered cosmetic.      

    Neuropathy is another known permanent side effect from Taxotere.  Again, insurance will pay for visits to the neurologist (doesn't mean they can fix it, tho).  I was warned about the possibility of neuropathy.  That didn't happen.  I MAY have some issues with tearing, but not enough to warrant any medical interventions.

     I belong to a group of 80+ women (and growing) from all over the world and we're pretty organized and pretty smart.  We've had a conference call with the FDA in April who said they would investigate, but no results - at least not yet.   Many of us are participating in an investigation by a law firm regarding a class action suit, which will likely never get off the ground.   It is very frustrating.  I still doubt anything will ever come to fruition in my lifetime, but the squeaky wheel and all . ..

    Good luck in your efforts.  Even if I'd known about this potential side effect, I think I would have proceeded with Taxotere, but I would have known that this was possible.  I probably would have figured it was worth the risk and would never happen to me (it probably was as I'm almost 5 years NED now).   You can check out our website at aheadofourtme.org. 

    Suzanne

     

     

    Point Well Made Suzanne

    Suzanne you make a very good point about choice. I venture to say that had I been told that Taxotere could cause permanent tear duct damage I would have said to go ahead anyway. After all, when you are faced with a life or death situation watery eyes would seem like a small price to pay. At that point it would have been my choice to go forward or not. Unfortunately that freedom to choose was not given to me. I read a huge list of possible side effects and watery eyes was included but permanent damage most definitely was not. Ah well, it is what it is and I have been dancing with NED for five years now.

    IRENE

  • pamcb3
    pamcb3 Member Posts: 44
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    Point Well Made Suzanne

    Suzanne you make a very good point about choice. I venture to say that had I been told that Taxotere could cause permanent tear duct damage I would have said to go ahead anyway. After all, when you are faced with a life or death situation watery eyes would seem like a small price to pay. At that point it would have been my choice to go forward or not. Unfortunately that freedom to choose was not given to me. I read a huge list of possible side effects and watery eyes was included but permanent damage most definitely was not. Ah well, it is what it is and I have been dancing with NED for five years now.

    IRENE

    Thank you ladies and again

    Thank you ladies and again congratulions for staying cancer free. My whole point with the taxotere and the permannet damage I have to my tear ducts and eyes is that if the drug company had informed oncologists to tell the patients to go to an eye doctor when tearing was evident and interfering with quality of life. I would have done what I was told and  most likely would be ok now. An example is I was told to get my teeth cleaned before during and after chemo to avoid gum recession. I did what I was told, I still got recession. I am having my third skin graft on my gums this Friday. Oh well at least I had a chance. If I had been advised to visit an eye doctor I would have had that chance also. I do have hair. My eyebrows and eyelashes are freakishly sparse but I knew that might happen. Cosmetic things are tolerable. But as Irene knows our eyes running like a faucet is at least for me life changing on top of all the othe changes cancer patients/survivors have to deal with. I can't drive for more than an hour because my eyes dry out so bad I can't keep them open, I can't work more than 5 hours ( I am a hairdresser) because again my eyes get dry and irritated and make my vision blurry. The list goes on. However if we can change it for the next person or our daughters (I have 2) I think we would feel like we won instead of feeling defeated because our hair is sparse or our eyes are watery. These drug companies charge obscene amounts of money for these drugs. They are negligent and need to fix it. when I hear an advertisement for a drug on tv and they go down the list of possible side effects It makes me angry. They know about this and should change the packaging. As it stands now the instructions say " tearing will stop after treatment"  there are a lot of us that it didn't stop. It might have been ok if the packaging had just one more sentence. If tearing increases visit an ophthalmologist. We would have had a chance. And yes power in numbers! I have an attorney who is a breast cancer survivor herself that can make it happen with other survivors putting their name in the hat. This is solely aimed at the drug company NOT the doctors! They would welcome it!  We have all fought and beat cancer let's help make a difference for future survivors! ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  • pamcb3
    pamcb3 Member Posts: 44
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    Well, do you have hair?

    Pam, at least insurance companies will pay for visits to the ophthalmologist and surgeries (I guess that doesn't help if it can't be fixed).  I, and MANY (too many) other women did not get our hair back (or only some of it) after Taxotere - which is another known side effect which we were not warned about.  No insurance will pay for our "fixes" (i.e., wigs, hair systems) because they are considered cosmetic.      

    Neuropathy is another known permanent side effect from Taxotere.  Again, insurance will pay for visits to the neurologist (doesn't mean they can fix it, tho).  I was warned about the possibility of neuropathy.  That didn't happen.  I MAY have some issues with tearing, but not enough to warrant any medical interventions.

     I belong to a group of 80+ women (and growing) from all over the world and we're pretty organized and pretty smart.  We've had a conference call with the FDA in April who said they would investigate, but no results - at least not yet.   Many of us are participating in an investigation by a law firm regarding a class action suit, which will likely never get off the ground.   It is very frustrating.  I still doubt anything will ever come to fruition in my lifetime, but the squeaky wheel and all . ..

    Good luck in your efforts.  Even if I'd known about this potential side effect, I think I would have proceeded with Taxotere, but I would have known that this was possible.  I probably would have figured it was worth the risk and would never happen to me (it probably was as I'm almost 5 years NED now).   You can check out our website at aheadofourtme.org. 

    Suzanne

     

     

    i apologize.....

    hi again, 

     I just re-read my response to your reply and I feel that I came across that I was making lite of your side effect from taxotere. I didn't mean to come across that way. I apologize if you took it that way. Iam extra sensitive to that being a hairdresser. I am very sorry  that has happened to you. Insurance companies should cover your needs as well! They are as bad as the drug companies! Too much power! They shouldn't be allowed to decide what treatments they will pay for or if a drug side effect is worthy of coverage! Fighting cancer is hard enough! We are cancer survivors. Now we fight to get back what cancer took from us. For some of us the battle will never end but if anything can make us more comfortable along the way we deserve to have it! I will be more comfortable when I know that the side effect of permanent tear duct damage will not happen to future survivors because the proper information will be given to the oncologists from the drug companies. Let's gather together and make this happen! We have nothing to lose, only to gain!!!

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
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    Pam, I was given Taxotere and

    Pam, I was given Taxotere and had to quit after three infusions.  It's been eleven weeks since the last chemo - December 8th - and finally, my hair has started to grow back, but....my eyes constantly water.  Many mornings, when I wake up, my eyes are stuck shut.  During the day, they water constantly.  I asked my oncologist's PA about seeing an eye doctor and she told me to wait six months to see if it corrected itself.  Hopefully, it will, but if it doesn't, I will contact you.  

    WHY aren't we being informed of the possible side effects so we can have them treated before they do permanent damage.  After reading this, I am going to make an appointment with my eye doctor NOW!

    Eldri

  • pamcb3
    pamcb3 Member Posts: 44
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    Pam, I was given Taxotere and

    Pam, I was given Taxotere and had to quit after three infusions.  It's been eleven weeks since the last chemo - December 8th - and finally, my hair has started to grow back, but....my eyes constantly water.  Many mornings, when I wake up, my eyes are stuck shut.  During the day, they water constantly.  I asked my oncologist's PA about seeing an eye doctor and she told me to wait six months to see if it corrected itself.  Hopefully, it will, but if it doesn't, I will contact you.  

    WHY aren't we being informed of the possible side effects so we can have them treated before they do permanent damage.  After reading this, I am going to make an appointment with my eye doctor NOW!

    Eldri

    Good for you! Hopefully the

    Good for you! Hopefully the scar tissue won't be built up as bad as mine was. It is the drug companies fault, they don't inform the doctors of this reaction on the drug info they receive. It may not happen to many people but one is too many! They have to know about this, I found articles on studies that date back to 2001! 

    My latest treat ment for this seeing how the "jones tubes" didnt work  for me is "serum tears" I have been going to Mass eye and Ear in Boston. The first specialist there suggested I work on the dry eye part of my problem. He sent me to another there. The serum tears are made from my blood. It is quite the process but hopefully it will be worth it.  There is a 90% success rate with this! I just hope I am not one of the 10%! I have been using them for 3 months so far... No change yet. I was told it can take anywhere from 3 months to 18 months to find relief . The soone you get checked out the better  tour have. Good luck!! I am available if you need me

  • bad121749
    bad121749 Member Posts: 31
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    Well, do you have hair?

    Pam, at least insurance companies will pay for visits to the ophthalmologist and surgeries (I guess that doesn't help if it can't be fixed).  I, and MANY (too many) other women did not get our hair back (or only some of it) after Taxotere - which is another known side effect which we were not warned about.  No insurance will pay for our "fixes" (i.e., wigs, hair systems) because they are considered cosmetic.      

    Neuropathy is another known permanent side effect from Taxotere.  Again, insurance will pay for visits to the neurologist (doesn't mean they can fix it, tho).  I was warned about the possibility of neuropathy.  That didn't happen.  I MAY have some issues with tearing, but not enough to warrant any medical interventions.

     I belong to a group of 80+ women (and growing) from all over the world and we're pretty organized and pretty smart.  We've had a conference call with the FDA in April who said they would investigate, but no results - at least not yet.   Many of us are participating in an investigation by a law firm regarding a class action suit, which will likely never get off the ground.   It is very frustrating.  I still doubt anything will ever come to fruition in my lifetime, but the squeaky wheel and all . ..

    Good luck in your efforts.  Even if I'd known about this potential side effect, I think I would have proceeded with Taxotere, but I would have known that this was possible.  I probably would have figured it was worth the risk and would never happen to me (it probably was as I'm almost 5 years NED now).   You can check out our website at aheadofourtme.org. 

    Suzanne

     

     

    Bilateral radical mastectomy

    Bilateral radical mastectomy November 8,2010.  TAC each 3 weeks for 18 weeks and radiation after that.  I am still on Arimidex and thought that this med. was affecting new hair growth.  I am still wearing a wig whenever I go out because you can see my scalp.  Im not sure when my oncologist will stop the Arimidex.  The problem with my eyes is not tearing but very dry and extremely sensitive to light....plus neuropathy,lymphedema and a heart arythmia.  On the positive side, I am so grateful to be able to spend time with family and friends.  We have a RV and do a lot of camping.  I may move slowly, but I am still moving.  Don't ever give up.  Prayers to all..

  • akshoop
    akshoop Member Posts: 2
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    Taxotere vs Taxol

    Hi, All,

    My oncologist has recommended Tacotere and Cytoxan as a adjuvant therapy prior to my radiation. I have Stage 1a but my Oncotype DX score was just below the recommend chemo.  I have been reading your comments and also a number of articles re: Taxotere permanent side effects.  Do any of you know if taxol is as effective and are any side effects known to be permanent?