Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer

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.

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.

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!!!!

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?

@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?

@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?

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!

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!

I want to post some good news here regarding TIVDAK. I had a CT scan after 5 treatments. The scan showed an “overall positive response to TIVDAK.” Tumor in liver is gone. Cancer shrunk in bladder area, cervix, and affected lymph nodes. My oncologist said: “This isn’t just good news. This is the best news.” I have 4 more treatments to go. I’m going to power through it and its side effects. One step at a time.

Hi … thank you so much for your caring comment. Yes, due to the painful bladder issues, I was put under the care of a palliative MD in addition to everything else. She has me on a pain mgt protocol which is helpful. Of course, this includes opioids - Norco and time release morphine. Both cause constipation but the palliative MD has me on daily laxatives and this has resolved the constipation. Also, my oncologist and pcp have me seeing a very good urologist who has me on bladder medication. I take it infrequently, however, because it dries my mouth and ruins my appetite - to the point of not eating. I have a stent in my right urether (sp) to open it up as cancer has clogged it. The urologist replaces it every few months as it tends to mineralize and this is one source of pain. So yes I am doing everything I can to work with the bladder side effects of TIVDAK but it is a struggle to get on top of the problems. I am having a scan in a few days to see if TIVDAK is even working, and I shall go from there. Thank you again.