Elahere: I have ovarian cancer since 10/202... - My Ovacome

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Elahere

MyDogKalie profile image
8 Replies

I have ovarian cancer since 10/2020. Have done all kinds of chemo plus radiation everything was good till this passes week. Had a pet scan and the cancer metastatic to different parts of my body. The last chance I have is this new drug Elahere. Has anyone been on this drug and what did it do for you?

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MyDogKalie
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delia2 profile image
delia2

Hi. I’m sorry about your recurrence. I know someone on Elahere and it has been working for her. She’s never been ned. The main issue is that it affects your eyes and you have to be checked regularly by an eye doctor and put a lot of drops in your eyes. I think it works for quite a few people who would have no other options.

Jmurphy6114 profile image
Jmurphy6114

Hi Katie-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.

Emmacrispins profile image
Emmacrispins in reply toJmurphy6114

Are you in the uk? I’ve just missed the chance to go onto a trial for Elahere at the RM. I wasn’t aware that it’s available in the uk, fabulous news if it is :)

Jmurphy6114 profile image
Jmurphy6114 in reply toEmmacrispins

Hi Emma - no, I am in the US in the Boston area, not sure of Elahere availability in the UK

Jacquiemoo profile image
Jacquiemoo in reply toJmurphy6114

Elehere was FDA approved 2 years ago, Dr told me..

CFVD profile image
CFVD in reply toEmmacrispins

Hi Emmacrispins, Guys in London have just started trialling Elahere (as part of the Gloriosa trial).

Emmacrispins profile image
Emmacrispins in reply toCFVD

Unfortunately I fell at the very last hurdle to get onto the trial ☹️

Jacquiemoo profile image
Jacquiemoo

I'm so sorry and sad for you, same thing happened to me. I'm still able to receive chemo so I'm on carboplatin and doxil. Dr was going to put me on elehere and avastin, I think that is my next option too as I'm uncurable now. I will pray this will keep you going as I have read it has for many of us. Keep up the good fight! You got this!

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