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.

An update on my TIVDAK experience: I had my second scan during my treatment with TIVDAK. The drug is still working for me after 9 cycles. No more spread, some shrinkage, no new growths. I asked my oncologist “what’s next”? To which he replied: “we keep going with TIVDAK every three weeks, with a scan after every 3 cycles.” Yes, TIVDAK has side effects but I’m all in, ready to keep powering through the side effects because I continue to respond to the drug.

That’s great news! Glad you are responding so well! How are you feeling?

@margitdill This is such good news. Thank you for coming back and sharing this with us. How are you feeling? How long do the side effects last?

I am 3 days post TIVDAK 10 and have the usual side effects, mainly fatigue and flu-like malaise. I just rest and otherwise I power through these things. I’m willing to experience the side effects, knowing the drug is working for me. If I keep myself occupied with other things like socializing with friends, Bible study etc, I feel a lot better. There isn’t a lot of info here on TIVDAK so I’m trying to fill in the gaps to help others. My CA-125 also went way down … from the last reading of 133 down to 86. I visualize that number going down to below 35.