Looking for people whose tear ducts were ruined by 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 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!

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 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!

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

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

Double Whammy said:

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 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..