Elahere

[Why4300]

After 4+ years of successful treatment with Carboplatin for metastatic ovarian cancer the carbo has stopped working. This week I will start a brand new drug called Elahere that was just given full approval in the U.S. on March 22. I am excited but also scared since one of the serious potential side effects is impaired vision! No more contact lenses and LOTS of eye drops! Are any of you wonderful ladies taking Elavere?

[Doodlemom3]

I started Elahere in early March 2024. After my 2nd treatment I did have a reaction with my eyes. They didn't feel dry but they were and I ended up with Keratitis.- I couldn't see the big E so my vision was blurred for a few weeks and then slowly improved. Using preservative free tears every hour and ointment at night and sometimes during the day really helped. I have also been experiencing some neuropathy too. I have been on a break but will be restarting the treatment soon. Here's the good news I have responded very well to the drug. My CA125 was 111 when I started then went to 33 and now as of Monday it is 11! Just had a CT scan and my tumors are shrinking as well. All that after only 2 treatments! My folate receptor tested at 95 for positive Elahere reaction.

During the treatments I was also diagnosed with steriod induced diabetes and started on Insulin by pcp (I wasn't on any diabetic meds prior) I had a reaction to the Insulin and felt it was poisoning me. I'm off it now and taking Metformin which is providing better control. It is my opinion that the Insulin reaction combined with the Elahere side effects created a perfect storm that caused my increased difficulties.

Wishing you much success with Elahere. I would suggest using lubricating ointment at bedtime from the get go.

[Why4300 in reply to Doodlemom3]

Thank you so much! You are weathering the challenges well and the effectiveness of the Elahere is really encouraging. I am practicing giving myself eyedrops since my treatment protocol calls for drops (both steroid and lubricating) 6 times a day for the first week! Best of luck as you continue!

[delia2]

Hi. I met someone who is on it. She said how important the eye doctor is as part of the team. It’s working for her but she had to lower the dose because of vision.

[Why4300 in reply to delia2]

Thanks so much! I am perfecting my eye drop technique since I will be giving myself both lubricating drops and steroid drops multiple times a day for the first 9 days! Elahere's effectiveness against the cancer is really encouraging!

[TxEm]

I'm on Elahere (began July 2023) and as Doodle mom have had some challenges but with regard to the ovarian cancer have had great response. My CA125 is lower than it's been in years and my tumor burden shrunk on CT and is now stable. I developed chemo induced colitis, finally developed neuropathy (DX in 2019 and have been on multiple chemo regimens), and have very dry eyes and blurry vision. With the exception of the dry eyes/blurry vision it would be unfair to blame the side effects entirely on Elahere necessarily as this may just be the "straw that broke the camel's back" as far as the colitis and neuropathy. I wish you the very best of luck on this regimen.

Also they run your first infusion at different rates, a titration, the second infusion they run faster. If you have more side effects faster the second infusion (ie vomiting, diarrhea, rash start sooner) they can return to running it at the rates to help avoid toxicity. You'll be in chair longer but at this point 🤷🏻‍♀️

[Why4300 in reply to TxEm]

Thanks for sharing your experience! I am getting the sense that vision side effects in particular can lead to a fine tuning of the Elahere -- either in the size of the dose or the frequency with which it's given. The other thing that is emerging from the responses I've recceived is the efficacy of the treatment -- the reports of falling CA 125 numbers and shrinking tumors are so encouraging. Once the carboplatin stopped working I wondered if anything could tame my rampaging cancer -- now I'm feeling genuinely hopeful! First infusion is just 3 days away.

[Saintgermain]

I'm in the US I'm not familiar with the Elahere but have just started carbo only for a recurrence very interested that you've been on it 4 years gives me hope did you get monthly infusions? Did your CA125 stay stable with it appreciate it.

[Why4300 in reply to Saintgermain]

I always had my carboplatin in combination with other drugs -- first with docetaxel and then with doxirubicin. My infusions were every 4 weeks. I had a 10-month break when Covid first hit and another break where I had a good stretch with just Avastin as a maintenance drug. The carbo pretty consistently reined in my CA 125 numbers and produced promising scans although the cancer never went away entirely. Sometime this fall the carbo just stopped working and the cancer took full advantage of that, spreading to lung and liver. Now I'm counting on Elahere to smack it back down! Replies from three women taking Elahere make me very hopeful! Good luck with your treatment!

[Saintgermain in reply to Why4300]

Can't thank you enough for touching base as Carbo/Taxol was successful for my recent recurrence but after 2 clear pet scans when I came off CA125 started increasing and a node lit up so we're doing carbo only hoping to get the CA125 to come down as mine is ER+ I also started Letrozole a couple months back. I've heard good reviews about Elahere hoping it's successful. I asked my Onc about it, but my Next Generation Sequencing testing was negative for a folate receptor said it wasn't an option. Thanks again for the hope!

[Doodlemom3]

I am continuing the tears and lubricating ointment at all times. My dryness/Keratitis problems started after I was done with the steroid drops post the 2nd infusion. When I restart I will be on a lower dosage.

[Jmurphy6114]

Hi, posted this earlier to another woman but reposting for you:

I am on Elahere - I had my first recurrence after being in remission for a little over six years… When I had my recurrence in March, I went through six rounds of carboplatin and Taxol, which was mostly successful, but I still had some spots on my liver and colon that seem to be platinum resistant… I was not a candidate for avastin, which would’ve been the next step as my hotspots were on my colon and one of the potential side effects of avastin is bowel perforation… your tumor mutations have to be tested to make sure that you’re a 75% or greater match for folate receptor positivity before you are a candidate for Elahere -I have a 95% positivity so I was a candidate- you have to be followed quite regularly by an eye doctor and your eyes have to be assessed upfront for eye health before you start Elahere… additionally, you have to be very religious about following the eyedrop schedule before, and after Elahere treatment to preserve your eye health… I did get some abdominal cramping after the first infusion, but not too much after that… Nine days after my second infusion, I did get significant eye issues, incredible light sensitivity, and blurry vision… My eye doctor tells me that Elahere causes corneal edema which leads to the blurry vision, and the only way to calm this down is to take preservative free eyedrops pretty regularly and to hold off on the next infusion until your eyes calm down… Additionally, the doctors dose reduce your Elahere if you do have eye issues… after the first infusion my CA 125 went up a bit, but the good news is that after two infusions CA 125 has come down by 10 points - my oncologist told me that the initial starting dose is six, because of my eye issues I was held back for a week and she will dose reduce to five - other than some central blurriness and light sensitivity, I feel really good and I’m hopeful that this will do the trick. Good luck to you.

[Why4300 in reply to Jmurphy6114]

Thanks so much for responding! I feel like I am building a trove of useful knowledge. I have been cleared by the opthalmologist and am busily practicing my eye drop technique! First treatment will be just three days from now. It's good to know that the doctors can be flexible in dealing with eye side effects. Like you, I have high positivity (97%) for the folate and I am hopeful Elahere will arrest the rapid spread of my cancer. Best of luck to you!

[yo207]

Hello,

I am a 12 year survivor. Stage 3c ovarian cancer. I am currently on Elahere. I just had my fourth cycle. I had very bad side effects with my first dose. I had terrible diarrhea, nausea, lack of appetite and fatigue. Thankfully no vision issues yet. I am now taking Imodium immediately after infusion and so far no diarrhea. I am concerned because my CA125 just went up by 50 points. I wish you the best. Reach out if you have any other questions. Keep fighting and living!

[yo207]

Hello Why4300,

I am just coming off of Elahere. I am going to say that I am a 12 year stage 3c survivor. I have had numerous recurrences. Too many to count now. I, unfortunately, did not do well on Elahere. I had horrible diarrhea, no appetite and some nausea the first two treatments. My CA125 dropped 50 points after one treatment but then slowly started to rise. I am currently at 214. I started at 52. I just had my second scan and there is more growth. I will say that I may be the exception because I hear that others have done very well with little to no side effects. I am just recounting my experience. As you know, every cancer is different just like every person. I am sending you prayers and well wishes. I hope that you have a positive experience and continue living life because that is what is important for ALL of us. God Bless you and all of the brave warriors on here. 🙏🕯️❤️

[Why4300 in reply to yo207]

Dear yo207, you are valiant!! Twelve years!! I am so sorry that Elahere is giving you so much trouble with little return! I had dramatic CA 125 drops after my first 2 infusions and then a smaller drop and after my most recent infusion a small rise. My doctor always cautions me that for me the CA 125 is not necessarily a good marker for what's going on. More reliable are the CT scans. I had a scan after my 3rd Elahere treatment and it was good news -- no disease progression and definite reduction on a number of cancer nodules. But -- as you know so well -- no chemo comes free of side effects and my next scheduled treatment has been delayed because of peripheral neuropathy in my hands and feet. I feel very fortunate to have avoided any problems with my eyes or my digestion but this neuropathy is affecting function -- I now have to walk with a cane for additional stability and I have a terrible time with small finger tasks like buttons, turning pages in a book, and handwriting. My doctor assures me this will get better and we will resume Elahere at a reduced dosage. I am working to stay hopeful since if Elahere fails I don't think I have too many other options. May you also stay hopeful! I truly believe that the cure for this wretched disease is getting ever closer!! You are in my heart and prayers!!