2-year Update

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larcon3922
larcon3922 Member Posts: 29 Member
edited September 2023 in Ovarian Cancer #1

Hello everyone. It’s been a long while since my last post. This is because (I’ll cut to the chase) I had a recurrence on my 13th month after pronounced in remission. To recap, I had my first diagnosis of ovarian cancer stage IIA on 8/27/21. I had surgery and 6 rounds of chemo then was placed on Zejula. On my last blood work, CA-125 jumped to 40 from 19. It didn’t seem much but actually the little bit of spike was enough to say that the cancer was back.

Needless to say, I had another surgery on 10/2/22 and another 6 rounds of chemo. Lost all of my hair, eyebrows, and lashes again😊. I went through the same ordeal like the first time. This time after the chemo, no more anti neoplasm maintenance med so I had to do a quarterly pet scan/Ct Scan for monitoring. Just got done with the 2nd PET Scan and so far it’s good. Still working full time and might have missed only 2-3 work days. I’m resilient that way. I might have vomited once and very little nausea in 2 years. I sleep good and have enough energy for work. I’m a nurse practitioner and see 18 patients in a primary care clinic everyday.

I learned a lot from this ordeal and would like to share some nuggets here and there hoping to encourage and alleviate unnecessary pitfalls for others who are new to this experience. I’ll visit again soon and will share with you things that I learned. Until then God bless everyone, stay strong, be faithful, and be of good cheer for we have a God that is faithful, just, merciful, and loving. Your friend—Connie L. Crowe

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  • cboyle2014
    cboyle2014 Member Posts: 1 Member
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    Thank you so much for the post. It really helps. I have only just recently been diagnosed with Stage IV Ovarian cancer. Yesterday was my first round of chemo. I will have 3, then the oncologist will see if I will be ready for surgery. The initial CT scan was not read right and I was sent to an OB/GYN who was going to do a complete hysterectomy on August16. When he got in there he found cancer. He took a lot of biopsies and sent me home. He has done a great job keeping in touch and he referred me to a gynecologic oncologist. He was livid about the misread CT Scan and asked I have another one with blood work. I had met my oncologist on the 24th, and scheduled for a revisit the following week. My CT was on the following Monday. Tuesday he called me with the results. He was hoping to start chemo Friday if the insurance approved the treatment. Wednesday we found out I had been approved. Thursday was my education of the procedure. I took a nurse friend with me for a second set of ears. Yesterday was my 5 hour chemo, 1st round.

    My daughter has been a rock, but she is scared too. We came home from the treatment, stopped at Sally's Beauty first, cut my pony tail, cut my hair short and dyed the longer hair on top teal, for a reminder of Ovarian Cancer Awareness. I have ordered some beanies, downloaded patterns to make some too. If I'm going to go through this I am determined to be as positive as possible and praise God every step of the way.

    I told my doctor I do not want to know statistics. I firmly believe God knows my time and I must simply always be prepared. No numbers or stats can determine my time. I also feel that if He does take me home, I win! If it is not my time and I survive, I win! I trust my doctor and I most certainly trust my Savior! I am surrounded by family and friends, prayers and positive energy!

    Any advice from someone who's been through it.

    Thank you again for sharing.

    Carolyn

    Social Worker for Veterans who are homeless

  • Yosefa
    Yosefa Member Posts: 8 Member
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    Hi There,

    I am sorry that you are going through this scary time, but stay strong and see the Chemo through no matter what, it will take you into remission.

    Chemo was easier than I thought it would be, even though I had a severe allergic reaction to Carbo Platin, neuropathy, energy loss and a sluggish gut.

    Is your tumor/s too big to go straight to surgery and do a radical hysterectomy? Is that why they are shrinking it first with Chemo? My tumors were 15cm x 15cm and 8cm x 6cm, and my Gyn/Oncologist surgeon did a robotic 5hr surgery within 5 days of my diagnosis. Everything removed including Omentem and several lymph nodes.

    Best wishes and stay strong! You can do this!🙏🙏

  • Yosefa
    Yosefa Member Posts: 8 Member
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    Thanks for sharing. I am currently 5 months into remission and on Zejula too. I am stage 3C serous. My CA-125 is creeping up with each month's blood test. From 10.2 to 12.8 in that time. It is well within "normal" but watching it increase is certainly making me uneasy.

    I know every case is different, but are there any takeaways from your journey, that you feel would be helpful?

    Thanks,

    Ingrid

  • larcon3922
    larcon3922 Member Posts: 29 Member
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    Hi Ingrid, that CA 125 will go up and down throughout the serial testing. As long as the number does not go outside the normal limit and the rise is not drastic like 12 then it was 29, you’ll be fine. Exercise, healthy eating, and positive mindset will get you through. Hugs and prayers to you and your family. Just remember, cancer does not define us. We got this🤗. I’ll keep posting.

  • Yosefa
    Yosefa Member Posts: 8 Member
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    Thanks Connie! ☺️ I try to stay positive and live in the moment, with friends, family, my wonderful (now therapy 😃 💕)dogs and doing fun things, along with planning future challenges and trips.

    However as you say, natural, lifestyle and diet methods will help me through this too. So I am about to see a Naturopathic Oncologist, to guide me with natural treatment to supplement the scientific way. I can't just sit still, and my researching online, I have found, can be depressing and has so many pitfalls.

    Enjoy this long weekend, best wishes ❤️

    Ingrid

  • larcon3922
    larcon3922 Member Posts: 29 Member
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    Chemo therapy:

    To those who are going through chemo. I would like to share with you my experience. I had 6 rounds of chemo twice. Once in 2022 and in 2023 due to a recurrence. I’ma nurse practitioner and has done a lot of research and continue to do so. After chemo I was able to go back to work the following morning to my coo-worker’s amazement. Below is my ritual on how I avoided nausea and vomiting:

    1 . Took Claritin and zofran first thing in the morning then zofran every 8 hours for the first 3 days after chemo. Ask for compazine as needed if zofran is not enough. 2. Eat small meals throughout the day. Lots of fiber, salads and fruits. Miralax twice daily, fanatically to avoid constipation. 3. Exercise. 4. Manage the stress to avoid too much cortisol secretion. Avoid chemo weight gain.

    i hope this helps.

    Connie L. Crowe

  • larcon3922
    larcon3922 Member Posts: 29 Member
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    just so you know, everyone reacts to chemo differently. I never had to throw up and I’ve had chemo in 2022 and earlier this year. Every round, first thing in the morning, I took my Claritin and zofran together for 4 days, that got me through everyday without nausea or vomiting. I had as needed compazine. I barely took any narcotic for pain. Eat small meals through the day and high protein is needed and vitamin c after surgery to heal faster. I was back to work after 6 weeks. I always went back to work day after my chemo. I’ll keep an eye for your posting for any questions you may have.