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Hello.  I am looking to connect with members who are being treated with Elahere or who are considering it.  
I am now platinum resistant (after 3 lines of chemotherapy over 3 years) and my oncologist has been discussing Elahere as an option.  My tumour was previously tested and I have the required receptor.   I am waiting for an opthamologist appointment   

I am interested in hearing from anyone who has been considering Elahere or who has started treatment. 
Thank you!

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Hi @cynthiaj ... I was checking back over some posts and saw that there hadn't been any responses to this so I wanted to respond and get the post active again. Perhaps there is someone out there who is taking or is considering being treated with Elahere who may have missed your first post. I know it's in its "infancy" in terms of usage in Canada. Hopefully there is someone else out there in our community who has been approved for use and/or is considering.

#Treatmentandsideeffects

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I have it waiting in the background.  Side effects sound wild.  Some women did really well on it and others found it to be too much or it didn't work.  But those who

respond to it get some extra time so I say try anything when the time comes - you never know.  Can you get a second opinion from another oncologist to 

help you decide? Good luck!

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I don't know anyone but I am on an E layers Facebook group. You can ask to join and talk with lots of people there.

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I would love to know if you started it and the outcome!  Hoping for good news. Eye issues? I expect using someone who understands the serious eye issues with this drug would be critical.

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Hi @cynthiaj ... did you get any additional information to help inform your decision regarding Elahere? I believe you were going to start today. I hope you were able to gather information that has helped you feel better about your decision. Please let us know. 

#Treatmentandsideeffects

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Hi there,

My name is Mysty and I'm also preparing to start Elahere. I have some reservations about the side effects to the eyes that I'm concerned about. I received a supply of eye drops from Abbvie, which is the maker of Elahere. (The eyedrops were delivered to my community mailbox and they froze in -19 C weather. The box says to keep them between +15-25C. I called Abbvie to let them know the drops they sent were ruined in freezing temps and they sent another supply to my freezing cold community mailbox. I called again to explain that they will need to send them some other way to avoid freezing temps. Stay tuned!)

The Elahere website provides quite a bit of info about eye care, which is great. That said, I'm hoping to hear from any women who are currently on Elahere and what their experience has been like. 

Here's the link to Elahere's info about eye care, including an eyedrop dose reminder:

https://www.elahere.com/eye-care#side-effects

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Hi @Call_me_4828 and welcome to OVdialogue. It was also nice to meet you on this week's Teal Tea 😊  We are so glad you found this site and this strong, courageous and amazing group of Teal Sisters. I also appreciate that you 'tagged onto' an existing thread on Elahere. Hopefully the Teal Warriors in here will be able to share their experiences. I know it's so newly approved that you among others, will likely be the ones forging the path forward on this and helping to educate us. I'm wondering @mfallis_OCC if you are aware of a group, via OCC, that is connected or engaged with Elahere users? Just a thought.

When are you planning to start Elahere? I know you said you were preparing to start. Also, will you medical team be monitoring you? I'm curious as PARB takers such as me (Lynparza) are monitored so I figured you would be with Elahere. Just curious what the protocol might be for that.

Again, welcome to the group and thank you for sharing. I hope you will be able to get the information you are seeking. 

P.S. Sorry to hear about the eye drop delivery fiasco. Sometimes common sense just isn't so common 😗

#Treatmentandsideeffects

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Hi Friends, I am sorry for not replying sooner to this thread about Elahere. I met last week with an ophthalmologist at St. Joe's Hospital in London, ON. He told me that he has seen about a dozen women in the last month for their baseline eye exam prior to taking Elahere. The first exam was very quick, but it did require taking those drops that dilate the pupils. (If you haven't had those drops before, be sure to bring your sunglasses because the brightness of the sun and/or snow can be very hard to take.) My eyes were healthy, but a little on the dry side and he suggested non-preservative, lubricating drops for the dryness. (My opthamologist gave me a couple of free samples of the lubricating eye drops. From what he told me, any lubricating eye drop that does not contain preservatives will do the trick.) I asked if he was responsible for prescribing the steroid eye drops that are an important part of treating the eye side effects from Elahere, but he said that my oncologist is responsible for prescribing those. 

The eye side effects from Elahere can sound pretty scary, but my sense from the patients reviews that I've read is that real diligence is needed when following the eye drop regime. If you follow what is advised on the Elahere website a patient will be putting eyedrops in her eyes at least 10 times a day for the first 4 days (6 steroid + 4 lubricating), as well as the day prior to treatment, and at least 8 times a day for another four days (4 steroid + 4 lubricating). That's a lot of eye drops to stay on top of, but if you do, you can expect fewer eye issues.

I was pretty apprehensive about starting Elahere because my quality of life will be severely reduced if I'm unable to see relatively clearly. Now that I know that I can probably keep a lot of the harm away by strictly following the eye drop protocol, I'm less worried. It's in my hands to lessen the harm. I still haven't been prescribed my steroid eye drops, but I will put another call in on Monday to try to get that moving along. My hope is that I will be able to start my treatment on February 27. 

#elahere #Treatmentandsideeffects

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Hi there! Thank you for the post, I was advised that my eyes were a little on the dry side as well. I will be calling tomorrow to see about the steroid drops. Do you have a start date for your treatment or are you waiting for scheduling? I did follow the link to ehahare that you provided in an earlier post, thank you for that!

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@Call_me_4828 thank you for such a comprehensive post. I'm sure this information is going to be of great value/interest to others exploring Elahare. I hope the eye drop protocol is as helpful as you describe. Obviously not the same, but I remember someone recently who had cataract surgery and they had a heapful of eyedrops of multiple kinds that they had to take for a few weeks following the procedure. She set reminders on her phone which she said was very helpful for keeping on track.

Good luck starting treatment this week. Please keep us posted as you progress. I'll be thinking of you!

#Treatmentandsideeffects

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Hi Friends, I have an update on my previous post. First, my treatment on Elahere was supposed to start today, but it has been postponed to next Thursday because no one scheduled my appointment! I found that frustrating after all of the follow-up that I did to keep everything on track. Sigh.

Second, the website where I gathered my information about steroid eye drops when taking Elahere is the American website. I learned just yesterday from my oncologist that Canada does not follow the same protocol as the Americans. My oncologist didn't know why there was a difference in protocol between the two countries so he wasn't able to explain that to me. He is meeting today with representatives from.Abbvie (the company that makes Elahere) and my ophthalmologist, as well as some other oncologists, so hopefully he will have a clearer picture why there is a difference between the two countries. I will update my post as soon as I learn more. Stay tuned!

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Hi, I am to start Elahere next week but no appointment has been scheduled. I think the infusion date indicated on the submission was tentative. I'm reaching out asap, thanks for your post. You're not in Ottawa are you?

Best luck! 🤍

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Hi @Vonnie_613 did they finally get a date set for you? I'm guessing you have all the eyedrop process in place too. Please keep us posted on how things go. Will be thinking of you and sending strength hugs your way 🩵

#Treatmentandsideeffects

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Hi @Call_me_4828 well I can only imagine how frustrating that would have been. Especially since you'd done all the legwork on the follow-up. Hopefully they figured out where the ball was dropped on their end and that it doesn't happen again.

Thank you for keeping us all so well informed and educated on the various elements of Elahere especially the eye drops. How crazy however that we have different standards country to country. Having said that, I know there are different standards in so many things which I can't figure out e.g., protocols for pre-meds for CT's, types of chemo approaches etc. I'm always curious who is more correct in their approach? Maybe no-one. Who knows. I'm pleased to hear however that your oncologist is meeting with the various representatives and doctors. 

Again, thank you for sharing all your information. I know how appreciated it is. I hope you are continuing to be ok, especially with the hoops you are going through. You've got this!

#Treatmentandsideeffects

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Hi Cynthia, I am platinum resistant after two lines of taxol and carboplatin. I was also on olaparib for 18 months at which time there was progression. Diagnosed late 2022. I have made the decision to give elahere a shot and have just had my opthamologist apt this Thursday and have been cleared for treatment. She reccommended over the counter eye drops Systane Ultra. I believe funding is the next step and I am to begin treatment March. I'm in Ottawa andd the Cancer Center was unable to give me any referance material which is why I'm here hoping to connect with anyone that is presently recieving treatment. Apparently I'll be the first in Ottawa. 

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Hi @Vonnie_613 and welcome to the forum. How strange that a cancer centre couldn't provide any reference material. Hopefully the ladies in this forum can share whatever they've gleaned as we all know individuals such as yourself and others considering this, are forging a path ahead for so many others. I know @Call_me_4828 mentioned there's an Elahere website. Did your oncologist direct you there? Hopefully it contains some helpful information.

@BellaDonna1959 are you still connected to the Elahere Facebook Group? Is it an active group? Perhaps it's an option for @Vonnie_613 and others to connect with individuals utilizing the therapy and/or who can share information that seems to be scarce.

I appreciate everyone sharing everything they can as they explore and begin this treatment. The more we know, the more powerful we become.

#Treatmentandsideeffects

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Hi, thank you for the reply much appreciated

Message:
Sent: 02-21-2026 11:32
From: Alwayslearning
Subject: Elahere

Hi @Vonnie_613 and welcome to the forum. How strange that a cancer centre couldn't provide any reference material. Hopefully the ladies in this forum can share whatever they've gleaned as we all know individuals such as yourself and others considering this, are forging a path ahead for so many others. I know @Call_me_4828 mentioned there's an Elahere website. Did your oncologist direct you there? Hopefully it contains some helpful information.

@BellaDonna1959 are you still connected to the Elahere Facebook Group? Is it an active group? Perhaps it's an option for @Vonnie_613 and others to connect with individuals utilizing the therapy and/or who can share information that seems to be scarce.

I appreciate everyone sharing everything they can as they explore and begin this treatment. The more we know, the more powerful we become.

#Treatmentandsideeffects

Hi I have been using Elahere Cancer Support Group & Alternatives on Facebook because it is the next treatment in line for me.  I am watching this thread to see.  Steriod drops are important is what I've read there.  OHIP should pay by the way.  

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@BellaDonna1959 thanks for sharing the specific group.

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My treatment with Elahere won't start until I've tried to go back on Taxol and Avastin once I am cleared to re start Avastin after a bowel blockage.  It's my next one in line. Good luck!

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Hi again, Requests for funding will be taken care of by your oncology care team when the required criteria are met. In regard to funding for Elahere I don't think age is a factor. I see you are also in Ontario the following link may shed some light on funding for injectable chemos:

https://www.cancercareontario.ca/en/cancer-treatments/chemotherapy/funding-reimbursement

Hope this helps 

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Hi @Vonnie_613 .... I wanted to check in and see if your treatments have started and how you are doing? I know you had a few hurdles to overcome (which you shouldn't have). Was thinking of you so wanted to check in. I hope you are doing well.

#Treatmentandsideeffects

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Hi Cynthia. My name is Dani and  I started treatment in January of this year. Days before my 3rd treatment I developed Ocular toxicity and treatment is currently on hold for 2 weeks while we wait for my corneas to heal. I see well enough to post this but am not yet healed. Texting is still difficult as things are very blury . I can not see well enough for spellcheck.  I'm happy to answer any questions you may have. 

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Thanks for posting Dani. I have a few questions if you are able to answer them and it’s not too onerous on your eyes. First, were there any other signs, aside from blurry vision, that you experienced? Second, were you prescribed steroid eye drops as part of your treatment? Were you using lubricating eyedrops as part of your regular eye care during your first two Elahere treatments?

Thank you so much and best wishes on a speedy recovery.

Mysty

Thank you Dani. I hope your eyes are feeling better soon and all the best for your ongoing treatment.

Mysty

Hi @danidelbiondo ... I am not sure if your recent posts on Elahere are your first posts to the forum but if yes, then I wanted to welcome you to OVdialogue. I am NOT expecting you to reply considering the eye issues you are having. I just wanted to thank you for lending your voice and treatment experience to this site. As you can tell, there is a need for information regarding this drug and sharing via OVdialogue will definitely helping others who will travel this road.

I hope, other than the eye issues, that the treatment is going well. 🤞

#Supportandencouragement #Treatmentandsideeffects

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Thank you. I first posted 6 or 7 years ago.  I was diagnosed at stage 3c for HGSOC, had my first surgery in January of 2019.  I was given two, possibly two and a half years. 

I have been treated with the standard taxol and carbo, taxol carbo and Avastin. A few years of NED. Surgery again when it spread to my spleen.  Carbo taxol again. 2nd recurrence,  carbo taxol again.  Then Niraparib.  Spread to my colon, carbo taxol again. This time it did not work. While recovering from chemo I had emergency surgery for an obstruction this past June. A scheduled surgery in August to remove all visible disease in my colon. Now Elahere.  It amazes me what the human body can tolerate. 

My message today is not to let statistics  drive your fear. As I fondly say to my family " I'm still standing ".

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Hi @danidelbiondo ... thank you for returning and sharing your story. What a journey you've had. I truly appreciate your message on not letting statistics drive our fear. You are certainly a testament to that. It is so frustrating when surgery plus chemo should eradicate this disease in our bodies but it can be such a persistent monster. I'm so glad you have been able to fight it at every step and I hope that Elahere is the effective treatment you need to beat this. 

Thinking of you and send lots of positivity your way 💙

#Supportandencouragement #Treatmentandsideeffects

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You are amazing, an inspiration. I have just begun Elahere, diagnosed stage  4 Ov and early stage colon in 2022. Surgery, carbo/taxol, Olaparib, carbo/taxol again which has brought me to Elahere and hope.

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🤞... thank you for continuing to share @Vonnie_613. Sending thoughts of hope and positivity your way.

#Treatmentandsideeffects

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