So the last 3 years (all during COVID)a severe side effect to my cancer treatment has kept me home bound . My eyes leak Profusely down my face all day long, all night long . I wake up and I can’t even open up my eyes. Three long years, doctors appointments trying everything . COVID has made this horrible extreme watery teary eyes problem that much scarier . I don’t leave the house except for doctors appointments. Food still gets delivered . It’s kept me from family functions/parties , one very important one yesterday in fact . I don’t explain to friends and family anymore because they just don’t understand. Constantly wiping your eyes with Covid out there is just way too uncomfortable to go out in public. SO …….. after trying every single eye drop on the market, medicated drops antihistamine drops, finding out my tear ducts were not clogged that this problem was due to my eyes being very dry from aromatase inhibitor‘s I’m taking for my cancer. My hair is like straw and my finger nails are brittle. I have not found anything for my hair or nails that works yet  . So… on my cancer forums daily, trying to find somebody who found some relief that could help me, one girl said …..are you getting the eyedrops with the PF on the front of the box? She said they come in individual vials ? I told her I’m sure I’ve tried them ,I’ve tried everything. She said now you have to make sure that you use the ones that come in the individual vials that are PF (Preservative free) . So I went and I bought a box of SYSTANE PF And a box of REFRESH PF , on one day I use one, and one the next , 2 weeks . They have different ingredients and wanted to see which is better for me . Unbelievable the difference in my eyes. I’m actually feeling normal, not to say they don’t tear sometimes during the day they do, just not down my face and I don’t look like I am hysterically crying all day. The experiment results were that the Refresh PF works better for me . This is something very new within the last two days of using Refresh PF ONLY. So my 2 week experiment worked ,I hope it continues. I woke up about two hours ago and I opened my eyes right up. It’s been three years.
I put these very personal posts up to maybe help someone who is suffering quietly ❤️🌹
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Ycats277
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Wonderful news. Hopefully it will keep doing the triick. You have had a miserable three years and I am thankful you are getting relief. It is so bad to deal with cancer and the side effects it causes. Blessings, Hannah
I am so happy for you!!💜 it is hard enough to cope with cancer but to have extreme side effects too.And also thank you for sharing to help others. We need to share things that work it’s like planting seeds of hope!
Thank you for sharing this information. I'm so sorry that you have had to deal with this situation for so many years and that it has kept you from enjoying activities. I am happy that you finally found something that works for you. I was recently at the ophthalmologist and he said my eyes were dry and also recommended Refresh. I have not bought it yet, but when I do I will look for the PF kind. I have had issues with my eyes being dry in the mornings and have also felt that sometimes they were difficult to open. I did not really relate this to the medications, but I guess they are causing this. I also sometimes have runny eyes in the evening and again did not relate this to the medications, so now I know. Best wishes to you.
How terrible you have had to go through the tearing of your eyes for 3 years. Thank you for sharing your story. I’m sure the information you shared will be valuable to someone else. This site is great for getting helpful information to help us endure the many side effects the drugs cause. Take care.Debbie
Thanks for sharing! I’ve been using the refresh and when I get up in the night to go to the bathroom, I put more in. I have the vials but use the bottle I must check if the bottle has the same marking. I’m going back to a uveitis specialist next week and she reckons my problem is the Xgeva. Great news for you, it was my ophthalmologist that recommended refresh and they know I put it in about 5 times a day. I didn’t realize the dry eyes was from the arimidex so thanks for sharing.
It might be the ZOMETA / XGEVA as well . I believe they’re switching me to Xgeva now I’ve been on Zo meta-for 3 1/2 years. So it’s either Zo meta-for the aromatase inhibitor’s. But either or the drops seem to get some relief. If you find out anything please tell me and how have you liked Xgeva? Thanks
I’ll let you know.as we’re driving to the Casey eye institute in Portland on Wednesday. Now I’ve been reading up on the denonusab and they are finding that when discontinued your bones can be subject to fractures in between 1-7 months. They seem to have a dilemma in how this should be treated in coming off it so it doesn’t bode well for me. One thing I read was that people who have been on a bisophonate as you have then switch to denonusab are in a much better position. In fact they seem to be recommending now that you start on a busophonate first Originally my oncologist had me on ixgeva every month but I kept nudging him to lengthen the time as I watched a video on this site which said moving to once every 3 months was fine. I’ve never found that video again but it explained that Xgeva helped keep the cancer in the bones. As to side effects, I gave no idea if it’s my age (71) or the Arimidex or Xgeva that causes slight side effects Overall my meds are tolerable but I would like to take a drug holiday. I doubt my Oncologist will agree. Ct scan mid October as they saw lung inflammation in July but think it was from a virus. 5 years on Xgeva and Armidex with no progression from my L4 vertebrae so can’t complain. I have quite a lot of energy but then I’m retired so can pace myself. Chris
I will be waiting to hear , good luck . I Don’t know if it’s the same matter or the aromatase inhibitor her but it’s one or the other. I’m so sad, I just woke up and I couldn’t open up my eyes, so the drops we’re not a miracle
Saw the uveitis specialist today and the inflammation in my right eye had decreased. She wants me on the same drops but tapering them off over the next few months. I told her that I had been talking to you and that you had a terrible problem with your eyes streaming. I said that you had been told it could be aromatose. She agreed that it caused dry eyes and said she’s had patients that have had a terrible problem but it hasn’t caused vision loss like mine. She said it was very difficult to know how to treat it. Sorry I didn’t get any information to help you. When she asked me if I thought my oncologist might have another recommendation for Xgeva. I said maybe he’ll suggest a bisophonate. She said that also causes uveitis but maybe not in your case. It made me wonder if switching to a different med in your case might be the answer. The only thing I can think is Faslodex but maybe Letrozole which is still an aromatose but maybe won’t cause so many symptoms. Anyway you’ve probably had these conversations with your Oncologist but my heart breaks to think of how you feel trapped in your home. Hugs Chris
I couldn’t get on here , Apparently my button for Java switched off . Thank you , you are so big hearted to mention my problem to your doctor xx you are so kind
I’ve had no problems with Xgeva until I had surgery in my ete. You’ll find it easier than Zometa. It might be that causing the tears abd you might not have that reaction with Xgeva. They say you get flu like symptoms for the first couple of days so just plan to take it easy. I’m not sure if I did in the beginning but recently I haven’t. Good luck Stacy! Let us know how it goes Chris
This is what she believes. There are few specialists in this field but the Casey eye institute in Portland Oregon has a department and are renowned. They ran blood tests on me to eliminate other sources but she said denonusab was known to cause it. Yesterday she also said a bisophonate can cause it but it might not in my case. Uveitis is the 3rd leading cause of blindness. I have glaucoma so it was after a trabeculectomy in my left eye which then became inflamed and they failed to recognize it so my iop went sky high and I lost vision. After surgery for cataract and goniotomy in my right eye the retina specialist saw it happening so sent me to Portland. We live in Olympia wa. I tested at 20/25 yesterday sn my right eye 20/600 in my left so I was thrilled Chris
Chris that is awesome to hear. So glad you were able to find a specialist, all that you went through is so scary. This one lady on here keeps giving some good information but she goes back to money all the time. I understand she can’t afford Xgeva. She mentioned that they’re charging her $8000 a night is for one injection. I keep asking her if she has insurance she has an answer. Other than you who is so helpful thank you so much for your time and your care not many people are reaching out. I’m suffering so and I’m so scared with the change of the medication. My pet scan two months ago was clear. No sign of metastatic disease and no sign of recurrence. And now he’s changing my meds. My eyes might be leaking but I’m crying hysterically all the time, so between the two I am so depressed and wet, my clothing my pillows my face. I’m crying writing to you right now. I’m usually the one that helps people I’m not the one that asks for help. I’m suffering so. I am so happy for you😍
I see that Providence bills United health care an advantage plan from Medicare.$10,000 By the time it’s discounted and the insurance pays, my portion is around $450-480. I only have Xgeva once every 3-4 months so I can afford it. Follow the money is correct. That’s why I’m not sure how the conversation will go when I tell my oncologist I want to stop. Big pharma rules and the hospitals will not want to give up the money they make on it. Perhaps you could have another conversation with your Onc I’m going to ask fir a drug holiday as I feel my body needs a break. You have 2 positives. First is your not losing your sight and the 2nd is your cancer is not progressing. Maybe you need to ask for a second opinion? Are you in the States?
Thank you so much for sharing. My eyes don't water but they are so dry they hurt and itch. So glad you found some rellief!
Are you on ibrance or letrozole? I have tearing eye probs and 2 ophthalmologist told me they see many woman on these meds who have "dry eye" syndrome which constantly makes your eyes tear to keep them lu rotated. I use systane individual (preservative free) and systane lacrilube at night and I have had good results. I was also told there is a special soft contact lense that aids in moisturizing the eye for this condition for during the day. I am now looking into this. Hope this helps.
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 . So… on my cancer forums daily, trying to find somebody who found some relief that could help me, one girl said …..are you getting the eyedrops with the PF on the front of the box? She said they come in individual vials ? I told her I’m sure I’ve tried them ,I’ve tried everything. She said now you have to make sure that you use the ones that come in the individual vials that are PF (Preservative free) . So I went and I bought a box of SYSTANE PF And a box of REFRESH PF , on one day I use one, and one the next , 2 weeks . They have different ingredients and wanted to see which is better for me . Unbelievable the difference in my eyes. I’m actually feeling normal, not to say they don’t tear sometimes during the day they do, just not down my face and I don’t look like I am hysterically crying all day. The experiment results were that the Refresh PF works better for me . This is something very new within the last two days of using Refresh PF ONLY. So my 2 week experiment worked ,I hope it continues. I woke up about two hours ago and I opened my eyes right up. It’s been three years. 
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