Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer

Yes, after immunotherapy (keytruda) did not work for me, my oncologist started me in TIVDAK. I have had 3 treatments so far and supposed to have 9. The side effects are a reality. Extreme fatigue, hair loss, PN, general malaise like you have severe flu but without the respiratory issues, etc. But I decided to power through this treatment and see what happens. I’m doing what I can to mitigate the side effects, mainly immune boost IVs on non treatment weeks. I will probably have my next scan I. A few weeks to gauge progress. They took a benchmark CA-125 a few weeks ago and it was 153. So that is being watched.

Is anyone being treated with TIVDAK for recurring and/or metastatic cervical cancer? I have had 5 cycles so far and the side effects are challenging. Mine are primarily bladder related: bladder pain, overactive bladder, bloody urine, and occasional incontinence. And of course ongoing fatigue. For the bladder pain, I’ve had to be on opioids. I’d appreciate any help, support or insight you can provide. Thank you.

I'm tagging @cancerback and @jenningh who have experience with Tidvak (tisotumab vedotin) for metastatic cervical cancer and can offer their insights.

@margitdill, I'm sorry to hear that the side effects are so challenging. Besides managing the bladder pain with opioids, was your team able to suggest anything to help with the other bladder issues like overactivity and bloody in the urine? Are you working with a palliative care (symptom management) team?

@margitdill I have not personally experienced cervical cancer and so wasn't treated with the medication, TIDVAK. @colleenyoung tagged a few of our member @cancerback and @jenningh who have experience with that medication and so I'm hopeful they will come here and provide you with more support.

I'm wondering too if your cancer care team has suggested any other methods for addressing the bladder symptoms and pain you described. @colleenyoung asked if you are working with a palliative team. That's a good idea to ask your cancer care team about. Sometimes people think palliative care is only for hospice patients but that isn't the only mission of palliative care. They work with patients who are referred for pain due to symptoms associated with serious illnesses.

Here is how Mayo Clinic describes palliative care.

-- https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

Is palliative care something you can talk with your cancer care team about? Is there an Integrative Medicine doctor associated with your team who can help with this?

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.

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.

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!

@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?