Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer

@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?

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?

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.

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.