Mesonephric adenocarcinoma...anyone?

Posted by kirlizee @kirlizee, Apr 7 1:31pm

Just found this Mayo site and interested to hear if there are any fellow rare birds like me with mesonephric cervical cancer.

I'm stage 4, starting Tivdak tomorrow after being on chemo, radiation, immunotherapy, surgery, targeted therapy, and a clinical trial at MSK since 2023.
cheers to all -

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Colleen Young, Connect Director | @colleenyoung | 4 days ago

@kirlizee, a belated welcome. While people often seek to be unique, being told you have a very rare cancer is not usually the way we want to be unique. It's so hard to find people with the same diagnosis.

You might be interested in this related discussion about Tivdak (tisotumab vedotin-tftv):
- Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer https://connect.mayoclinic.org/discussion/tidvak-tisotumab-vedotin-therapy-for-metastatic-cervical-cancer/

@kirlizee, you have been through many treatments. How are you doing so far on Tivdak?

kirlizee | @kirlizee | 4 days ago

Only one so far and nothing remarkable but I’ve been on this carnival ride long enough that I know things can develop over the course of more infusions. Hopefully not! I will have a scan after my 3rd infusion in May so we’ll see if it’s working.

bahamasgirl | @bahamasgirl | 21 hours ago

I have it and was at Stage 1B uterine/endometrial. Guess we're a rare bird. I start my first infusion in a week... sort of freaking out.

kirlizee | @kirlizee | 20 hours ago

The trial I was in was open for any mesonephric gyn cancers, which I hadn't really thought about - that it could play out as cervical, ovarian, etc., same source/and location. I thought uterine was quite rare and the MLA type. Surgery is usually on the table at 1B but sounds like you're doing taxol first and then cisplatin/radiation?

Helen, Volunteer Mentor | @naturegirl5 | 3 hours ago

@bahamasgirl @kirlizee I'm relieved you found one another here on Mayo Clinic Connect. A warm welcome to both of you.

The respective cancers, as you both noted, are very rare and so I don't know of anyone else here in our Gynecological Cancers support group who has reported this. While the following members have experienced different diagnoses of gynecological cancer and treatments they can provide you with support. @gynosaur42 @mommacandy @denisestlouie @jenelleseaman

@kirlizee Did you have a look at this link that @colleenyoung recommended a few days ago? If so, did you find helpful information there?

- Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer https://connect.mayoclinic.org/discussion/tidvak-tisotumab-vedotin-therapy-for-metastatic-cervical-cancer/

kirlizee | @kirlizee | 1 hour ago

In reply to @naturegirl5 "@bahamasgirl @kirlizee I'm relieved you found one another here on Mayo Clinic Connect. A warm welcome..." + (show)

@naturegirl5 yes, I saw that thread, thank you. Pretty much the same as what I heard on cervical cancer subreddit...people have wildly different experiences and the bad ones seem to get posted more so we all get concerned. But it seems to work for many and I'm hoping I can be one. I'll have a scan in June after my 3rd infusion.
Thank you for the support!