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Topic: Severely dry eyes on Tamoxifen

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Sep 10, 2020 06:57PM

Karen2019 wrote:

I’ve been on Tamoxifen for three months now and while it has caused dry eyes since the beginning, it has become much worse in the past month, to the point where my contacts are sticking to my corneas and causing abrasions even with constant use of rewetting drops. My eye doctor says my eyes are so dry that I will probably have to give up wearing contacts all together, which I really don’t want to do. He has prescribed Xinia eye drops that haven’t come in yet at the pharmacy but he is not even sure they will help me much. Has anyone else had these problems? Did anything help?

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 5/25/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 10, 2020 08:08PM ShetlandPony wrote:

I consulted an ophthalmologist about my dry, tearing eyes. He recommended lubricant eye drops such as Refresh Optive and Systane Ultra. (Not get-the-red-out drops!) For long-term use we need the preservative-free drops that come in single-use vials, rather than the dropper bottle that has preservatives. You can ask for an eye ointment to use overnight. For a while, I had the ophthalmologist insert punctal plugs in the ducts at the inner corners of my eyes. They kept the natural tears or the drops on the eyes longer, so I had fewer times when tears were just running down my face. Wearing glasses can help protect your eyes from getting dried out in stores with fans blowing, outside when it is breezy, etc. I avoid all fans that blow on my face. You may indeed need to give up those contact lenses. I am not familiar with Xinia and did not find it on a brief internet search. Good luck. Cancer treatment — it’s the “little things”, right?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 10, 2020 08:37PM Mom2bill wrote:

I also have a problem with dry eyes and was having difficulty removing my contact lenses. I started taking Krill Oil and while my eyes still feel somewhat dry, I can remove my contacts without difficulty now. I also use Refresh Plus eye drops throughout the day as those can be used while wearing your lenses. I don’t know if it makes a difference, but I wear the rigid gas permeable contacts, not the soft ones. When I was at the point where I couldn’t remove my lenses, I ordered some of those little contact lens removers from Amazon, and those really helped. Good luck

Dx 11/9/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/20/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/25/2020 Whole-breast: Breast Hormonal Therapy 4/2/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 10, 2020 08:43PM ShetlandPony wrote:

Oh, that’s a good point. I was advised to try fish oil capsules, but I did not because I didn’t know if it was ok with the chemo I was on at the time.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 10, 2020 08:59PM - edited Sep 10, 2020 08:59PM by Georgia1

I take Omega 3 supplements and use Restasis eye drops, which your ophthalmologist can prescribe. Both help quite a bit although age is also a factor. (I'm 62.)

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 10, 2020 10:06PM FindingOptimism wrote:

Although I don’t wear contacts, I really struggled with dry eyes for a while. I have several things to suggest:

Big thumbs up to fish oil, using a humidifier when it gets drier, eye masks that can be warmed up. I also tried multiple versions of eye drops but the relief was temporary. I also think that my body adjusted and the dry eyes lessened about 4-5 months after they began. Hoping you find relief, because I understand how miserable it is

Dx 8/2018, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 12/13/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Sep 10, 2020 10:51PM Karen2019 wrote:

Thank you, ladies! Lots of good advice. And I will let everyone know once I get the Xinia

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 5/25/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 21, 2020 05:45PM Karen2019 wrote:

So, I’m an idiot. It was Xidria, not Xinia...think I got confused with the flower. And my insurance wouldn’t pay for it (and it costs $700/month!); so they gave me Restasis instead, which takes weeks to months to begin working. Sigh..

Diagnosed at 52, right lumpectomy with bilateral oncoplasty, Oncotype score 42 Dx 7/15/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/16/2019 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Reconstruction (left); Reconstruction (right) Chemotherapy 11/20/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 5/25/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 22, 2020 11:33AM gb2115 wrote:

I had to stop wearing contacts because of Tamoxifen. Severe dry eyes, just like you said. The eye doctor could see dry patches on my cornea. It took a couple of months of Retaine MGD drops daily (like 4-5 x day), for a couple of months for it to quiet down. Now I use one drop a day during the colder/drier months, and can generally not use anything during the summer.

I gave up on contacts. It just wasn't worth it.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.

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