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Taxotere ruined my tear ducts

pamcb3
Posts: 33
Joined: Apr 2012

My chemo regimen was 4A/C treatments, and 12 taxotere treatments. I was told that my eyes would tear, but would go away after chemo was over....nope. I put up with it for a while because I was dealing with fluid around my lungs heart and infiltrations in my lungs.... After seeing 3 eye doctors locally I was referred to a specialist an hour away. The drug had ruined my tear ducts and I had to have "jones tubes" put in. They are prosthetic tear ducts. It helped about 50%. But my left eye tube gave me trouble from the start, I could see it, it would shift and hurt, the dr. Pushed it back down at a recheck appt, only to have it pop back up halfway through the same day!! Ow! He removed it last week, instant relief when it came out.....I was given some ointment to use 4x a day.....it started running like a faucet about ten minutes after I left the office. He is going to put in a smaller tube....uuuggghhh!! Did any one else go through this? Maybe if I had gone to the eye doctor when they started watering they could have irrigated the tear ducts and avoided this. The eye doctors I went to said they are seeing an increase of this problem. I have had to incur so many extra procedures from side effects of taxotere. It was supposed to be the milder drug compared to my first four treatments....not so. Besides the side effects the extra costs have been substantial and my delay back to work. I am a hairdresser so my eyes are defiantly needed!! I have only been able to work one day. I feel like the drug company should give a stronger warning about this side effect. I also think they should be the ones to pay all the costs I am paying because of it! Even with good insurance it's ridiculous!!

jessiesmom1's picture
jessiesmom1
Posts: 711
Joined: Jun 2010

I am SO glad that you posted on this subject. It could just about have been written by me. I also had 4 rounds of A/C and 12 rounds of Taxotere. The last one was in 8/2010. My eyes started watering like a faucet sometime during the Taxotere rounds. They were still watering 4 months after chemo was finished. I mentioned it to my oncologist and he said it would eventually stop. He said he never had a patient whose eyes never stopped tearing. Well, it has been 15 months and my eyes are STILL watering. I have seen my opthamologist who had no solutions and who referred me to a specialty opthamologist. My appointment is in 3 weeks. I hesitate to have surgical procedures on my eyes. Yours is not the 1st negative story I have heard about the placement of the tubes in the tear ducts. I will have to hear what the specialist has to say. This problem is the only area that disturbs me about the care I have received from my oncologist. Otherwise he is wonderful. I also wonder if earlier intervention of some sort could have prevented this damage. Nobody realizes how awful this problem is unless they have personally gone through it. My eyes are always pink-rimmed from all the wiping. I cannot wear eye makeup of any kind because it would just disappear from the constant wiping. Sometimes the tears run down my face and complete strangers will ask if I am OK. Usually I just say I have allergies. I do not believe the issue is with the drug company warnings. It is there. I think the issue is doctors who do not take notice of this side effect soon enough and refer their patients to specialty opthamologists before it is too late. It is nice to know I am not the only one whose eyes water like a faucet but I sure do wish it would just stop like my doctor said it would. :(

SIROD's picture
SIROD
Posts: 2124
Joined: Jun 2010

Hi,

I did not do Taxol or Taxotere though Taxol was suggested by my oncologist a month ago. Hormonal treatments are failing and I am now doing a last ditch effort with Faslodex (gone from 250 mg to 500 mg) since I took it back in 2008/2009. Worth a try and I had another reason to postpone. My oncologist doesn't believe Faslodex will work and it probably won't. I won't be using either of those drugs as I have been reading that many women seem to have tear duct problems with them.

I had a strep infection in the lacrimal sac in the tear duct in 2008 (reason I postponed the ct scan that found widespread pulmonary & pleural metastasis a few months later). I went to all the local eye doctors and the most they did was lance the infection. I had tried the hot compresses, so many antibiotics and and the infection area was lanced 3 times but nothing was working. They should have tried to run that tube down to see if anything was stuck, not one of them tried most likely due to rusty skills.

Finally, I saw my uveitis specialist who immediately sent me to the biggest city in my state (3 hours away from my home) and he found the tear duct blocked and then did a DCR. Mine was a successful and I have a fully operational tear duct. I had a stone blocking the duct (a stone as in the manner of a kidney stone) and no amount of antibiotics would clear it up nor would the lancing.

About 5 months later I had another infection of the other eye. I made my local eye doctor do that tube things to unclog whatever was in it. Her skills were not good but it did work.

A good eye specialist who does DCR are worth doing. I highly recommend doing a DCR, an easy, out patient procedure. I do know how awful it is to live with this condition but the solution really works. I was not put out for the surgery but given enough IV pain meds to keep me calm. There really wasn't much pain afterwards. I stayed in a nearby hotel and left the following morning. Three months later he pulled the plastic stent out and haven't had a problem with that tear duct in over 4 years.

However, after reading about so many women having a tear duct problem with Taxol and Taxotere, those are two chemos I won't use.

Best wishes,

Doris

Donna Jane's picture
Donna Jane
Posts: 2
Joined: May 2014

My eyes started contantly watering after my 4th chemo session of Taxotere.  It got so bad I had open sores on the bottom and top of my eyelid. I put antibacterial ointment to help my eyes heal through the constant tearing. I went to an opthomologist. My tear ducts were not blocked..but I had an overreacting glands on the side of my eyes because of the Taxotere. I got a prescription for this and it was eye drops...they sort of work. My eyes continued to water and another doctor told me I had dry eyes and that was why it continued to water and needed eye drops for that! So confusing! I just completed my 6th and last session of chemo and my eyes still water but not as much! I pray that your eyes improve over tme! I know how frustrating it can be and I love to wear makeup! 

SIROD's picture
SIROD
Posts: 2124
Joined: Jun 2010

I am every so grateful to you ladies who have warned me away from Taxol and Taxotere which does often caused damage tear ducts. I had a DCR for a stone (like a kidney stone) in the lacrimal sac with a strep infection. My new tear duct works 100%.

My oncologist suggest Taxol as a possible chemotherapy when the Faslodex fails. I am now 100% certain that I won't risk my other eye with this drug line.

I am so sorry for your unsuccessful tear duct. Would it be possible to have a new one put in?

Best to you and thank you for the information,

Doris

pamcb3
Posts: 33
Joined: Apr 2012

Hi, 

just to follow up I have had three sets of "jones tubes" they are basically prosthetic tear ducts. My eye specialist is great and is determined to help me get the best results I can. The surgery isn't bad at all. A couple of days of feeling funky but mostly from the anesthesia. When I had the first set put in he told me that depending how bad the scar tissue was ( the taxotere caused my tear ducts to scar tissue and totally blocked them) he had two choices for repair. Either he could put stents in and I would never need any maintenance or if they were really bad I would need the jones tubes. And he typically only put one in at a time to let the patient get used to it and make sure the size was right. Well I made him put two in as I wasn't working. Well one of the tubes began to hurt and didn't seem to be working After 4 months. So he replaced that one with a shorter tube. I went another six months and neither were working..... I believe my problem is if I am about to get a cold my sinuses swell and move the tubes. So I had my last set last July and they have been ok.....not perfect because the taxotere also created severe dry eye which I use Restasis drops for twice a day and the tears that my body produces are bad tears....no natural oils. i find it very hard to drive at nigh and my eyes are,super sensitive to sunlight. The only warning I was given with this drug was " slight tearing that would go away after I was done with chemo....which it just got worse and worse. They eye specialist Dr. Steven Covici in Springfield mass. Said if I had my tear ducts irrigated when they started tearing I would be fine right now. he also has several other patients from various locations with the same problem. I keep watching for 1-800-bad drug for taxotere! I will be the first caller. The drug company needs to put more of a warning with this drug. It hasn't been easy with my profession as a hairstylist! Blurry vision and runny eyes! Uuggggg! Thank goodness for the tubes, they are not perfect but it is better than constant tearing that made my skin around my eyes so dry and sore. I can at least wear some makeup!!!

New Flower
Posts: 3981
Joined: Aug 2009

Sorry for your situation. Many of us have had eye problems, however not as bad as you. If you file a formal complaint with FDA it will help other paitiants. Additionally moisturing eyes during Chemo probably could prevent. I was on Taxotere too and cannot wear make up since that. I hope your new tubes continue working

wishing you the best

jessiesmom1's picture
jessiesmom1
Posts: 711
Joined: Jun 2010

It is interesting to see what I posted SO long ago. My last Taxotere infusion was in August 2010 and my eyes are still watering excessively. I have seen 2 opthamologists. After no answers from either of them I went back to my optometrist. I got the best eye exam I have ever gotten. I was very pleased. He determined that the puncta on both of my eyes were either completely or nearly completely blocked. In layman's terms the puncta are the little drain holes in the corners of your eyes - 1 up and 1 down for a total of 4. He referred me to an oculofacial plastic and reconstructive surgeon. This is a highly specialized type of opthamologist and there are not many of them around. She confirmed that the puncta are blocked. The lacrimal drainage system itself (ie. the tear ducts) are OK, it is just an issue with the puncta. 

I scheduled a surgery to put stents in my eyes to open the puncta (April 2014). I was SO looking forward to having normal eyes. It was not to be Cry. Apparently the upper puncta are completely and irreparably closed so the stent she had planned to put in (which would take care of upper and lower) was not appropriate. I now have 3 options: 1. A mono stent for each lower puncta 2. Jones tubes 3. Punctal plugs that contain a lumen that actually wicks away moisture. I just need to decide which route to take. 

She said that this is a fairly well known issue with the Taxanes (Taxol and Taxotere). When she trained at Johns Hopkins Hospital it was common for chemo patients treated with Taxotere to preemptively have stents put in their eyes! In addition, she felt that oncologists should be more aggressive with eye care on Taxotere patients. Flushing the eyes frequently while undergoing chemo is uppermost on her list. There is even professional literature on this subject. 

I hope my experience is helpful to anyone out there on Taxane chemotherapy. I hope you have better luck than I did, but I am very happy that I finally have an answer after so long.

IRENE

Double Whammy's picture
Double Whammy
Posts: 2274
Joined: Jun 2010

And - please understand that I am not a medical person.  . . but I'm gonna comment anyway.

We have all been there - sitting in the oncologist's office scared to death about the possibility of dying sooner rather than later.  And they tell us they want go give us chemo and most of us say youbetcha!  And we really have no idea what that means except we've all seen the movies of bald people throwing up and they tell us we'll be bald, but they have meds to help with nausea.  And most of us think we can do this - and we do. 

But there are life changing side effects that we are not told about upfront.  I too had the tearing, but mine went away.  But no one warned me about it.  I could hardly see I was tearing so much and NO ONE warned me.    I was told about the potential of neuropathy that could be permanent, but somehow I avoided that.  I was not told about nail changes and when my nails peeled and fell off months after chemo, it was a suprrise. I was not told about skin toxicities, but I had that pretty impressively and it also resolved.  Because of that, my chemo was modified.  I guess it was serious.   And no one told me that chemo might kill me.  It didn't, but I really had no idea how toxic it is and what that means.  I was told my hair would fall out.  It did - and it didn't come back.   No one told me that, either, and it is a not so rare side effect of Taxotere.  I wear wigs and have lash extensions now.  It was devastating.

I don't know why they don't tell us everything that can happen so we can know what we might be getting into.  I don't know if the doctor thought the chemo nurse would tell and the chemo nurse thought the doctor would tell or what, but NO ONE told me.  Do they just wait and see and hope one won't have any long term side effects (or we'll die and then it won't be an issue)?  I know that in my case, had I been told there was a possibility of permanent hair loss with Taxotere, I would have taken the risk anyway.   I think when we're in that vulnerable situation we have a right to know what might happen.  Just take the time to say something really simple - like I'm recommending XY chemo for you because.  These side effects may be permanent, but I think it is the best treatment for you because . . .  How hard is that?

So sorry about the discomfort of the tearing.  At least my lack of hair doesn't hurt or effect my vision, but it really is an emotionally devastating discovery.  Taxotere is supposed to be a gentler chemo than Adriamyacin, but at what cost?  Oh, and does cost have anything to do with it?

Suzanne

 

 

pamcb3
Posts: 33
Joined: Apr 2012

Thanks for sharing! I am so sorry about your hair! I wasn't even aware of that one. The whole experience is surreal when you are going through it. We all pray for the last treatment and being done.....but we are not really done, it is the quest for our "new normal" I am still searching for that two years later. Besides the chemo side effects I am having a super tough time with the anti-estrogen meds. But I still have moments of reflection and think " What the hell just happened to me!" I am so thankful to be alive and thankful for all the wonderful support I had through the cancer journey. I guess I am starting to realize I will never be done. There are so many constant reminders. What makes me angry is I had made a promise to myself when it started that I would get everything back that cancer took from me.....I haven't been able to keep my promise to myself yet. I am typically a very positive person and tried my best to stay that way through the process even with my many many bumps in the road. But when I was done I was so happy to begin the rebuilding of myself....well I feel like a weighted punching bag, I start to feel good them wham back down I go....it's getting pretty old. Back to the main subject again, imwould have most likely followed all of  my Oncologists treatment plan. I had the second opinion as well buti do feel if I was aware of more things I could have avoided many discomforts and permanent damage. Yes everyone's journey is different and we all react differently to the drugs. But when I am asked to talk to women that are going to go through it I am very clear about the tearing of the eyes, i could hav had a different ending if I had the right information.other than that staying positive is so important.my hope is that someday cancer treatment will be so advanced that our treatment  will be considered "barbaric" stay well!!     Pam

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