Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer

Yes. It was discovered because she was in severe pain. First surgery removed the mass and one ovary. Next she had a total hysterectomy. Then, the doctor nicked her bowel so she had another surgery to repair that. The dr thinks he got all the cancer. Next is chemo in 3 weeks.
It is exhausting. Even though she's 37, she is still my baby. Its hard reconciling how this happened.
How are you ?

Exciting to hear good news on your results! I will be starting Tivdak treatment for my cervical cancer soon. Side effects sound scary so started doing research on here. This gives me some hope as I was pretty disappointed and scared when my first treatment plan didn't get the response we were hoping for from my tumor. Best wishes to you on your journey!

Best wishes to you as well! I’ve had 11 TIVDAK infusions to date. This week I am taking a break from it and start back up next week. I needed more recovery time. TIVDAK does work; keep that in mind. Side effects will be different for everyone. Mine have been fatigue, bladder issues like urge frequency for up to 10 days after the infusion; dry flaky skin, joint pain, and spotting. You just have to power through all of this!

@margitdill It’s been several months since I last checked in with you. I thought I might check back and ask how you are doing. How did the rest of your treatments go? And how are you feeling?

@ratt0031 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. I hope you will find our support helpful to you. I certainly did when I first joined in 2019 after I was diagnosed with endometrial cancer and had a hysterectomy.

May I ask a little more about your own journey? You wrote that you were disappointed and likely very frightened when your first treatment plan did not work out. Do you know when you will starting your new treatment?

Hello!

Thanks for the warm welcome! A little about my journey.. I was first diagnosed back in October 2023. They discovered a mass against my pelvic wall with unknown origin that had similar cells as cervical cancer so that's how my team of doctors proceeded to diagnose & treat my invasive squamous cell carcinoma. I went through chemo & radiation for 5-6 weeks. Afterwards, my PET scans were clear up until the middle of 2024, when I started to feel my pain reoccuring in the same region as before. I had another PET scan and showed a little activity again around my mass. This is my second go at treatment to try and beat this thing. Since I had radiation done in the area prior, the next plan was to try different chemo drugs. I've had approximately 6 rounds of carboplatin and paclitaxel along with 3 rounds of immunotherapy drugs, avastin & keytruda. PET scan results showed the mass is still growing despite chemo treatment so now we are going to try Tivdak. I have had one dose, however, we are on pause until I can get a pain pump, scheduled for next week.. yay! Then I presume, I will continue with the Tivdak treatments. My doctors have given me another option to get rid of my mass but it involves a radical surgery that will be life changing. It will result in amputating my right leg due to the location of the mass. I am a mother of a growing 15 year old boy and caregiver of my soon to be 79 year old mother so I would rather exhaust all other options before having to do surgery. It has been a roller coaster ride for me to say the least both physically and mentally/emotionally. I've recently discovered this group so excited to do more research and read on stories of those with similar journeys. May I ask how you are doing now after your hysterectomy?

Hi … thank you. The treatments are rough. I don’t recover from them well. This week I took a break from them to see if o can recover. I have TIVDAK 11 next week. Then I’m due for a scan. I’m dealing with fatigue and neuropathy mostly. My red blood cell factors are low but not low enough to warrant a blood transfusion. My oncologist wants to keep going with TIVDAK so I’m following his orders!!!!

Would love to hear about your results if you are willing to share! I will be starting treatments here soon. Still feeling anxious but praying we will get the response we want.

I am still on TIVDAK. I will have my 13th treatment next week. I had a scan recently but do not know results yet. TIVDAK is rough after so many treatments. I can’t do much without assistance. I will know more next week.