Tidvak (tisotumab vedotin) therapy for Metastatic Cervical Cancer

Posted by cancerback @cancerback, Oct 28, 2022

Has anyone started treatment with Tidvak for Stage IVa metastatic cervical cancer? It has very scary side effects and I am interested in how patients are responding.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for Helen, Volunteer Mentor @naturegirl5

@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?

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PS the side effects ebb and flow throughout the interim period - between treatments. I might feel yucky in the morning but pretty good in the early evening. Sometimes I’ve had 3 good days in a row then boom, I feel yucky again. It’s very inconsistent!

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Profile picture for margitdill @margitdill

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.

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One of the big side effects of TIVDAK that concerns doctors is severe eye inflammation. I have to have my eye doctor check my eyes prior to each treatment. Thankfully, my eyes are fine. I follow the post-chemo eye drop protocol and after 10 treatments, no eye problems, one of the inconveniences of the TIVDAK infusion is that you have to keep ice packs on your eyes for 60 minutes during treatment. To ease this, I wear gloves because I have to hold the ice packs in place. Without gloves, the coldness begins to hurt your hands. Then I find something I can listen to for 60 minutes to make the time fly by. Usually this is a sermon, a Bible lesson, a guided meditation - something that is healing and inspiring. Since I started doing this, I don’t mind the icing part of the treatment at all.

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Profile picture for margitdill @margitdill

One of the big side effects of TIVDAK that concerns doctors is severe eye inflammation. I have to have my eye doctor check my eyes prior to each treatment. Thankfully, my eyes are fine. I follow the post-chemo eye drop protocol and after 10 treatments, no eye problems, one of the inconveniences of the TIVDAK infusion is that you have to keep ice packs on your eyes for 60 minutes during treatment. To ease this, I wear gloves because I have to hold the ice packs in place. Without gloves, the coldness begins to hurt your hands. Then I find something I can listen to for 60 minutes to make the time fly by. Usually this is a sermon, a Bible lesson, a guided meditation - something that is healing and inspiring. Since I started doing this, I don’t mind the icing part of the treatment at all.

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@margitdill I find also that I can lose track of time when I'm listening to a podcast that is spiritual and inspiring. That's such a good strategy you've discovered that works for you.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@margitdill I find also that I can lose track of time when I'm listening to a podcast that is spiritual and inspiring. That's such a good strategy you've discovered that works for you.

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Yes … thank you. With regular chemo, I could stream shows but with having to ice the eyes, I had to find things that required listening only. It helps make time fly and takes attention off the uncomfortable icing.

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Profile picture for margitdill @margitdill

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.

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I am trying to find out all I can about cervical cancer. My youngest daughter was recently diagnosed after having surgery to remove one of her ovaries which developed a cancerous mass.
I have already cut out processed foods and sugar drinks from her diet.
I just feel like I need to learn more, and do more to help her thru this.
Does anyone have recommendations ?
Thank you, in advance.
Amie Rudy

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Profile picture for servicegoddess @servicegoddess

I am trying to find out all I can about cervical cancer. My youngest daughter was recently diagnosed after having surgery to remove one of her ovaries which developed a cancerous mass.
I have already cut out processed foods and sugar drinks from her diet.
I just feel like I need to learn more, and do more to help her thru this.
Does anyone have recommendations ?
Thank you, in advance.
Amie Rudy

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Hi …I’m sorry to hear about this and she is blessed to have such a loving supportive mom. Her treatment is going to depend on the stage of her cancer. For example, I have stage 4 cervical cancer which is mostly treated by chemotherapy. Currently I am receiving a chemo drug called TIVDAK. It is effective but designed for advanced cases like mine. I have also done supportive therapies like IV vitamin C. A clean diet is good especially because it helps ease side effects of treatment. There are nutritional supplements that have been researched; go to pubmed and plug in search terms: cervical cancer dietary supplements. But when you get down to it, cervical cancer is going to be treated with surgery, radiation, or chemotherapy or some combination of these - depending on the stage of her cancer. Find out that, get a good oncologist, and follow his/her treatment plan. Stay positive and on that course of action.

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Profile picture for margitdill @margitdill

Hi …I’m sorry to hear about this and she is blessed to have such a loving supportive mom. Her treatment is going to depend on the stage of her cancer. For example, I have stage 4 cervical cancer which is mostly treated by chemotherapy. Currently I am receiving a chemo drug called TIVDAK. It is effective but designed for advanced cases like mine. I have also done supportive therapies like IV vitamin C. A clean diet is good especially because it helps ease side effects of treatment. There are nutritional supplements that have been researched; go to pubmed and plug in search terms: cervical cancer dietary supplements. But when you get down to it, cervical cancer is going to be treated with surgery, radiation, or chemotherapy or some combination of these - depending on the stage of her cancer. Find out that, get a good oncologist, and follow his/her treatment plan. Stay positive and on that course of action.

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@margitdill Thank you for responding to @servicegoddess with your experiences.

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Profile picture for servicegoddess @servicegoddess

I am trying to find out all I can about cervical cancer. My youngest daughter was recently diagnosed after having surgery to remove one of her ovaries which developed a cancerous mass.
I have already cut out processed foods and sugar drinks from her diet.
I just feel like I need to learn more, and do more to help her thru this.
Does anyone have recommendations ?
Thank you, in advance.
Amie Rudy

Jump to this post

@servicegoddess Since you are back here you've likely read the excellent information and life experience advice from @margitdill Welcome to Mayo Clinic Connect and to the Gynecological Cancers Support Group.

It must so very frightening to watch your daughter go through this diagnosis. Do you know what the treatment plan for her is following her surgery?

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Profile picture for margitdill @margitdill

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.

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Hey … thank you. I feel like giving back even in a little way because these diagnoses are scary and it’s hard to know where to turn.

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Profile picture for servicegoddess @servicegoddess

I am trying to find out all I can about cervical cancer. My youngest daughter was recently diagnosed after having surgery to remove one of her ovaries which developed a cancerous mass.
I have already cut out processed foods and sugar drinks from her diet.
I just feel like I need to learn more, and do more to help her thru this.
Does anyone have recommendations ?
Thank you, in advance.
Amie Rudy

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@servicegoddess, does your daughter have cervical cancer that has spread to her ovary? How is she doing? How are you doing?

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