1. < Gynecologic Cancers

stage IV cervical cancer

Posted by mmchap2120 @mmchap2120, Jun 25, 2023

Hello!
Anyone out there with Stage IV metastatic cervical cancer? I was just diagnosed and am so scared! I have full faith in my team at Jacksonville Mayo but it would be nice to have others to speak with.

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mmchap2120 | @mmchap2120 | Jun 29, 2023
In reply to @naturegirl5 "@mmchap2120 I so remember the rollercoaster of emotions when I heard my diagnosis. I often had..." + (show)
@naturegirl5

@mmchap2120 I so remember the rollercoaster of emotions when I heard my diagnosis. I often had thoughts as you shared that included thoughts that I might not be digging in my garden next summer. And then my mind and body would calm down because I had my hands in soil in my garden. I felt like that until I had my first appointment with my GYNOncology surgeon at Mayo. I knew that my cancer care team would surround me and take care of me. I also knew that no matter what the outcome would be it would be OK. I might be digging in my garden next year or I might not be digging. I can’t see into the future although my mind sure tried to take me there. The anxiety was intense and so was the calm between the surges of anxiety.

Please be kind to yourself. This is a difficult time and you’re allowed to have all of the emotions that come up.

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Good morning Helen,
Your words are so spot on. My mind wants to wander into the unknown and right now that is a very dark place. Tomorrow, when we sit with my team, I'm sure that I will have a clearer, while not exact picture of what's to be. My gyno/oncology said something to me yesterday that has stuck in my heart and mind, "From your neck down is our (my team's) responsibility and from your neck up is your responsibility, but we are here for you in every way"! I thought that very profound and true. The treatments that I will go through are led by my team but my mental state will be in my hands. I cannot even come close to expressing what an incredible blessing it is to be able to talk to others who, while maybe not in the exact same boat as I am, are willing to share, support and care. Thank you so much!

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jun 29, 2023
In reply to @cancerback "Hi mmchap2120, I was diagnosed with stage IV metastatic cervical cancer in 2021 when cancer spread..." + (show)
@cancerback

Hi mmchap2120,
I was diagnosed with stage IV metastatic cervical cancer in 2021 when cancer spread to lymph nodes in my neck. I had immunotherapy treatment which was ineffective so I went on carboplatin and taxol chemotherapy which resolved the lymph nodes in my neck but then the cancer spread to the wall of my bladder so I was put on a new chemotherapy drug called Tivdak. After 6 infusions, I was taken off this drug due to worsening peripheral neuropathy. Since then my PN has gotten much worse. The cancer on the wall of my bladder has improved and stayed stable at my last CT scan in April. If they decide to put you on Tivdak, the results are very mixed. Some patients do very well and have had as many as 15 infusions and others find it doesn't work for them at all. The side effects also vary greatly. Some are very sick with nausea and vomiting and lose their hair. Other' like me only had occasional bleeding from the nose, itching, no hair loss and peripheral neuropathy. If you have PN already, I am not sure if Tivdak is a good idea as mine
has worsened so dramatically after I finished treatment. You are lucky that you are at the Mayo clinic where you have a whole support team. I am sure they will give you the best treatment possible.

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@cancerback It is good news that your last CT in April showed that the cancer has improved and nothing new showed up. Each time I settle down between these cancer surveillance appointments. Then as the next appointment gets closer I get more anxious especially about the CT.

How are you feeling today? Have you found ways to cope with all of this?

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1 reply
cancerback | @cancerback | Jun 29, 2023
In reply to @naturegirl5 "@cancerback It is good news that your last CT in April showed that the cancer has..." + (show)
@naturegirl5

@cancerback It is good news that your last CT in April showed that the cancer has improved and nothing new showed up. Each time I settle down between these cancer surveillance appointments. Then as the next appointment gets closer I get more anxious especially about the CT.

How are you feeling today? Have you found ways to cope with all of this?

Jump to this post

Hi,
I'm not feeling very good about my prognosis as I got results from CA-125 test yesterday and it has gone up again. My oncologist last summer told me I probably had 3 years tops and I fear she's right. If my cancer has progressed or metastasized to a different site, I will have to decide whether to go back to Tivdak and have even worse PN or switch to palliative care. As I have just turned 80, I'm more fortunate than so many women with this kind of cancer who have died young and, in some cases, left young children behind,

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1 reply
gynosaur42 | @gynosaur42 | Jun 30, 2023
In reply to @mmchap2120 "Good morning Helen, Your words are so spot on. My mind wants to wander into the..." + (show)
@mmchap2120

Good morning Helen,
Your words are so spot on. My mind wants to wander into the unknown and right now that is a very dark place. Tomorrow, when we sit with my team, I'm sure that I will have a clearer, while not exact picture of what's to be. My gyno/oncology said something to me yesterday that has stuck in my heart and mind, "From your neck down is our (my team's) responsibility and from your neck up is your responsibility, but we are here for you in every way"! I thought that very profound and true. The treatments that I will go through are led by my team but my mental state will be in my hands. I cannot even come close to expressing what an incredible blessing it is to be able to talk to others who, while maybe not in the exact same boat as I am, are willing to share, support and care. Thank you so much!

Jump to this post

Good morning, mmchap2120,

I hope you were able to get some rest last night, but imagine it may have been a challenge. I will be thinking of you today. I like that your team expresses confidence around caring for your body. From my perspective, you are welcome to bring your "head" here and share what you are experiencing so you don't have to experience it bouncing around inside your skull with nowhere to take it. I can't imagine anything you might think that hasn't also been experienced by others, and if what you experience is unique, it will teach all of us something valuable.

Know you are thought of with care and hope today.

Gyno...

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jul 1, 2023
In reply to @cancerback "Hi, I'm not feeling very good about my prognosis as I got results from CA-125 test..." + (show)
@cancerback

Hi,
I'm not feeling very good about my prognosis as I got results from CA-125 test yesterday and it has gone up again. My oncologist last summer told me I probably had 3 years tops and I fear she's right. If my cancer has progressed or metastasized to a different site, I will have to decide whether to go back to Tivdak and have even worse PN or switch to palliative care. As I have just turned 80, I'm more fortunate than so many women with this kind of cancer who have died young and, in some cases, left young children behind,

Jump to this post

@cancerback I can understand how and why your recent results from the CA-125 would affect how you are feeling. Yes, you’ve had a long life and I hope a good life that you can reflect on. I’m 71 and before I fall asleep at night my mind drifts back to my past and I’ve realized that no matter what adversity I’ve faced in which I felt very anxious before something happened - being afraid of what would happen - I persisted and had more internal strength than I realized at the time. As you come into these big decisions over the next several months I hope that you will remind yourself that it’s so very human to feel the emotions that you have.

Do you have children? Grandchildren?

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margitdill | @margitdill | Jan 7 9:48am

I was diagnosed with cervical cancer stage 4 in August 2023. I went on a chemotherapy protocol of cisplatin, taxolpacitel (spelling!), keytruda and avastin - every 3 weeks. I believe in complimentary care so my functional OBGYN put me on IV Vitamin C (100 gram bag) once a week. After 3 chemo treatments I had a scan. The oncologist said to me: “All you need to focus on is the cancer has reduced substantially in your body. Keep doing what you’re doing.” I finished 6 chemo treatments last month. I’m having a scan this week. The oncologist thinks I will switch to just avastin and keytruda. I also go to an alternative care clinic where I get IV vitamin C and IV curcumin (which was added a month ago) - weekly. A few months ago, I took the RCGG blood test there. It identified which supplements and natural infusions would help me. So I’m following that protocol as well. My oncologist is good with it. I can’t say I feel better physically but I don’t feel worse. I go through days at a time where I feel “normal”; then I have a string of bad days. I stay upbeat, positive, and prayerful daily. I’ve never had a dip in blood cell counts throughout this. My immune system is strong and for that, I’m grateful.

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