Mesonephric adenocarcinoma...anyone?

@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?

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.

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.

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?

@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/

@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!

@kirlizee Thank you for the feedback and for sharing your progress. I very much hope that Tidvak (tisotumab vedotin) works for you.

How are you feeling? Are you working full-time/part-time or are you retired? What activities do you enjoy?

@naturegirl5 the ridiculous thing is that since becoming a cancer person in 2022, I have ALWAYS felt fine. No one has any idea except for when taxol made me lose my hair.

I went part time at work last summer when I was traveling for my clinical trial and liked the flexibility so stayed with it after I flunked out in February. Love cooking, working out, live music, sports…basically I have the same life I always had other than now it is lots of doctors and constantly thinking about death 😝

@kirlizee I feel for you. I was diagnosed with ovarian cancer (high grade serous) in 2021. I continued working for a year after diagnosis, then I retired. Turns out that working was a blessing in disguise: at the end of the day, I would think
“I haven’t thought about cancer for 8 hours!”

@lathomasmd in addition to the fact that I can’t live without the insurance, I appreciate the mental exercise, social contact, and focus on something other than cancer that I get from working. Hopefully you’ve found other (pleasant) things to occupy your time?