Leaky Eyes

[Ycats277]

So after all responses I figured that it is from hormone meds , FASLODEX, letrozole etc. thanks for helping

[hdhonda]

Glad you found the guilty drugs. Blessings, Hannah

[Praising]

So the hormone pills cause the eyes to water weep?

[Ycats277 in reply to Praising]

That seems to be the common drug we are all taking . So the people that have ER PR positive metastatic breast cancer that are being treated with hormone therapy like lertrozole or FASLODEX, I believe is the culprit, knowing that doesn’t help the situation because we all have to take Hormone therapy for the rest of our lives for ER PR positive metastatic breast cancer. Terrible my whole experiment worked but there is no way out

[Praising in reply to Ycats277]

I’m with you. How long? I’ve been on exemestane for 7 mo Ibrance

[Ycats277 in reply to Praising]

I’m now on drugs for 7 years now suffering with this eye crap .

[Ycats277 in reply to Praising]

I’m on them 7 years but the eyes started when I was switched to injections instead of pills 3 years ago

[13plus]

I missed your op but it had never occurred to me that maybe the hormone drugs might've been responsible for my eyes sometimes watering for no apparent reason. Interesting! I've just had to switch drugs completely so hopefully no more of an eye issue for me at least!

[Ycats277 in reply to 13plus]

So what are you going to take instead of the hormone drugs . Are you ER/PR POSITIVE?

[13plus in reply to Ycats277]

Hi, yes I'm er+/pr+ I was soon Ibrance , Fulvestrant. and Xgeva for over 2 years until progression apparent this year. Now I've been on Lynparza for 2 weeks. I feel good! (well for the first few days I did occasionally feel "weird", no precise symptoms, and my appetite reduced but only to a good degree 😄). I was quite anxious about switching after feeling great on Ibrance but so far it's all good and my body is back to it's normal self with no concerning pains anywhere. Feeling very grateful.

[TammyCross in reply to 13plus]

I had exactly the same regimen as you for two years, then progression. Lynparza was not one of the options my oncologist mentioned. Not at all. Where are you receiving treatment? What do you (or Sandra?) know about it? Sounds like side effects are minimal. I guess it is too soon to know how it is working.

I am in a trial taking an oral SERD (Fulvestrant). I have my first PET scan on this in half an hour. I have been feeling good, and my markers are in the normal range, but still....my imagination is battling with optimism. If it isn't working, I want to have some other ideas in my pocket.

[13plus in reply to TammyCross]

It depends on the genetic profile of your cancer, it might not be relevant for you. It was created, I believe initially, for ovarian cancer. So that's interesting about the trial. So they think there is a chance that the oral version works better than the injection? I hope that's the case! It can be hard to keep up an optimistic attitude sometimes I agree. Try to focus on the fact that you feel good - my oncologist thinks that's one of the most important signals that all is well You can also ask your doctor about sending the most recent biopsy material (they will have it) to FoundationOne (they usually take care of processing it) for a genetic analysis. They analyze more than the standard tests, and then list the drugs most likely to work for your specific genetic makeup, and in the order to try them. It's pretty interesting (note- they didn't tell me anything different to my doctor but it's good to see the aligned thinking, and it's possible you may find out more about your cancer than previously known, depending on what kind of analysis has already been done.

[13plus in reply to 13plus]

I'm in NJ, part of the St Barnabas system

[TammyCross in reply to 13plus]

Oh, fairly near me, then.

[Ycats277 in reply to TammyCross]

I’m in florida

[TammyCross in reply to 13plus]

Yes, my oncologist is not good at explaining. Why would the oral work better than the injection? Another oncologist in her department said they can give a higher dose orally than in intramuscular injection. My oncologist said that is not right; they are different and dosage can't be compared. She said it might work in ways the injection doesn't; that is what they saw in earlier trials. (This is phase 2.)

I had only one biopsy, when first diagnosed. After a year or so, she ran a genetic test. I don't know if it was Foundation 1, but it looked at 20 or so genetic markers, and I had nothing useful. I understand the genetic type can change with progression. I guess she thinks this is the first thing we are trying after progression, so might as well see if it is working.

Had the scan today. There is a new radioactive isotope specific for ER+HR- bc. No fasting, and I could read and move around. Apparently, this one doesn't get into muscles so they don't get lit up.

When I got the genetic test results back, I didn't see any recommended treatments. Hmm.

[13plus in reply to TammyCross]

I'll send you a private message

[TammyCross in reply to 13plus]

how does that work? I guess I will get a notice that you have messaged?

I wonder if my scan results from yesterday are in. I feel fine overall, but I think I am having pain around the new bone met, which partly triggered change in treatment.

[13plus in reply to TammyCross]

If you don't get a notification just go to the top of this page and click on "Chat" to see your private messages

[Ycats277]

That awesome, I hate new stuff and the unknown. Good luck with new meds , I’m rooting for you xx