Elahere and increased CA 125?: just started... - My Ovacome

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Elahere and increased CA 125?

1dog4cats profile image
12 Replies

just started immunotherapy with Elahere. Does anyone know whether increases in

CA 125 occur in early treatment. Mine increased by 30% following first treatment.

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1dog4cats
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12 Replies
OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi there 1dog4cats

Thank you for your question. I'm sure that some members of the forum community may be along to share their experiences with you soon but I wondered whether you have had an opportunity to speak with your oncologist about the CA125 increase since starting Elahere (Mivertuximab soravtansine)? They should be able to provide you with some personalised guidance on this. We would be happy to help you plan or prepare for any future appointments if you think this could be useful?

Elahere (Mivertuximab soravtansine) is not currently approved for the treatment of ovarian cancer here in the UK. As Ovacome is a UK based charity, MyOvacome forum members are therefore less likely to have direct experience of this treatment. The Ovarian Cancer Research Alliance is based in the US and have an active online forum that may be of interest alongside this one: ocrahope.org/patients/suppo... .

In addition, the Foundation for Women’s Cancer is a non-for-profit organisation based in the U.S, who support research, education, and public awareness of gynaecological cancers. They published a booklet in 2023 titled ‘CA-125 levels: Your guide’ which explains more about CA-125 and how it is used in a clinical setting. It’s available to view via their website here: foundationforwomenscancer.o... .

I hope this information is useful and that you can access some clarity and reassurance regarding the increase in CA125 soon. Please don't hesitate to get in touch if there is anything we may be able to help with. You can message us directly here on the forum, email us via support@ovacome.org.uk or give us a call on (+44) 800 008 7054. We're here to support you Monday - Friday, 10am - 5pm (U.K time).

Best wishes

Annie - Ovacome Support

1dog4cats profile image
1dog4cats in reply to OvacomeSupport

Many thanks for your response!

Tealgirl7 profile image
Tealgirl7

I imagine it is too early to worry but not sure about that. I will be interested to see how you do on this medication. It is not available in Canada either but I have been reading about it and it shows promising results. Wishing you the best

1dog4cats profile image
1dog4cats in reply to Tealgirl7

So far, with just one infusion, has not diminished CA125. Oncologist wants to give more time. I am now (actually I’m sitting in the infusion chair) getting second infusion!

Better work as I am running out of options. Only had about 30% chance of working.

I’m am checking my CA 125 in about ten days.

Thank you very much for your reply to my initial email.

R

TxEm profile image
TxEm in reply to 1dog4cats

I hope you’ve had good results with your second infusion. My personal experience was a slight reduction in CA125 after my first dose of Elahere and a more dramatic reduction after the second dose. After the second dose I also had the most eye side effects. I have just had my fourth dose. I hope you have success with it.

1dog4cats profile image
1dog4cats in reply to TxEm

So happy to r

1dog4cats profile image
1dog4cats in reply to TxEm

So happy to receive your reply. Thank you. I’ll know in a few days about CA125. My eyes hurt more this time.

R

TxEm profile image
TxEm in reply to 1dog4cats

My ophthalmologist increased my wetting drops to “every time I think about it” (about 10x/day) and the ointment to at night and “nap time”. Then also an additional use at night of I wake up in the middle of the night. Your may see if all that drama use of the lubricants helps your 💚

1dog4cats profile image
1dog4cats in reply to Tealgirl7

Just to let you know, my second infusion results showed a thirty percent diminution in CA 125. I am not letting myself get too happy knowing how fickle my response has been!

TxEm profile image
TxEm in reply to 1dog4cats

I am so thrilled for you! I hope this trend continues. Are your eyes doing okay?

1dog4cats profile image
1dog4cats in reply to TxEm

Yes. I get checked every three weeks. So far no problem with eyes.

But I worry about Elahere stopping working.

Driving me crazy!

Nikk200 profile image
Nikk200

mine wasn’t checked until about 3 months in and it dropped significantly due for a petscan soon

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