Just An Update on HG Serous Ovarian Cancer

@jenelleseaman
You are brave and strong! You can do this.
Wishing you healing and a safe journey through the whole treatment process.

I’ve had seven cycles of topotecan since February this year, so did a PET CT scan to see where things were up to. When I went to see the oncologist I already knew that I didn’t have to go ahead with the eighth cycle. I was hoping that it was because the scan had showed that the cancer was gone.
Unfortunately, the scan showed that the topotecan had stopped working. The cancers had grown both in size and avidity, and there are some new growths that my oncologist is concerned about.
The verdict is that I need to have a short break before I start the next chemotherapy treatment. I start gemcitabine in early September. So it’s back to square one.
I’m disappointed, but I still trust that God’s in control and is always working for my good, despite what the circumstances might be. Next weekend is my 16 year anniversary of when I was first diagnosed with the HGSOC! That is amazing! I firmly believe that is a result of the power of prayer.

@jenelleseaman I want to thank you from the bottom of my heart for writing to me. I spoke about you to my oncologist/surgeon and his cancer team. They were amazed at your story and the courage you have demonstrated to so many. I didn't reply because my spirit is questioning if I have enough courage as you to have so much determination and hope. So much FAITH and endurance. I have cried reading your stories many times. I was diagnosed on March 12 2026 with endometrial serous carcinoma p53. Been on Taxol 175 /Carbopatin 156 from April 30 to June 11, and the neuropathy was so debilitating, I asked for TAXOL to be reduced to 135 for the last 3 cycles. I'm now in the 2 week coasting period before the last cycle on August 13. Hardly anyone in the Chemo center of Perlmutter can get a vein even with a 24 baby needle. They fast pump Benadryl into the IV that creates a brain fog so bad I cannot even speak and this is the time I have a social worker come in to talk, and a line of nurses all sticking holes in my and not being successful. I have written a list of requests for August 13 after doing more research. Slowly infuse Benadryl over 30 minutes. No One can come in to interview me during this time as I cannot even think straight or talk. And I want a professional team on stand by who can locate a vein, have warm compresses and make sure I've drank a lot of water at least 2 hours before they begin the puncturing nightmares. I'm still suffering from peripheral neuropathy since July 23. I'm concerned nerve damage will be permanent but worse, that this endometrial HGSC p53 is waiting to return. I had a radical hysterectomy that removed a 2 inch tumor that didn't go through the wall. That was April 2. It's now August 1. I demanded an ultrasound and transvaginal ultrasound last week and the oncologist who wanted to wait until after the 6th round gave me a script for it. NO ASCITES in abdomen. I've got NO motility of digestive tract and went 7 days without a BM. Now the only way I can go is with lots of stool softeners and fluids. When you want to survive and want to live, I see there are many hardships to overcome and accept as a trade off. I've been praying for you ever since I met you on this forum. I was a Health Teacher in New York. I have so much admiration and love for you. <3

When the nurses were having difficulty finding my veins, I asked for a port-a-cath. I’ve recently had it replaced with a new one after 10 years. They are great! The downside is that when you aren’t on treatment, they need to be flushed every 6-7 weeks.
Ask about getting one.

@lindybowers It’s a comfort that you and @jenelleseaman are in contact with in one another. She is an inspiration to us all.

Your description of what you’ve been enduring brings me to say that I’m hopeful you will come out of all this on the other side of treatment. You said it so well—“When you want to survive and want to live, I see there are many hardships to overcome and accept as a tradeoff”. It’s a relief that we’ve found one another here on Mayo Clinic Connect and can provide support.

I would like to add that I am saying healing prayers for you. You are one strong woman who continues to advocate for herself.

@jenelleseaman Is surgery an option? Seems cutting it out is better than chemo when possible. That's my thought anyway.

From the scan, there’s too many cancers spread around the outside of my bowel. I’ve been through the surgery option before, and I don’t think I can afford to lose any more of my digestive system.
Surgery also takes too long to recover from. I wouldn’t be able to teach my students for the rest of the year. While I’m on chemotherapy I can keep teaching.
It’s a question I’ve asked already.

I am sending prayers to you because I don't really I have anything else to offer. Your diligence and efforts are inspiring.

@jenelleseaman Because I read that your port-a-cath became infected. I opted not to have this done. I'm being proactive and thinking positively, "I'll not need chemo again because I'm going to be the one who beats a recurrence." Part of me is in a dissociative state of mind that this really isn't happening to me. I'm bald, walking like a duck from neuropathy, and bruised on my arms from chemo nurses who couldn't stick me correctly with a 24 aby needle. I watched my first husband die at 41 of colo rectal cancer. Then my father 2 months later of lung/throat cancer at age 61, and my mother die at age 74 of colo rectal cancer. I absorbed all their pain in my body. Tomorrow I have genetic counseling. I'm doing this for my grandchildren who don't even talk with me. Their mothers rejected my healthy lifestyle as I was a health teacher in middle and high schools. They rejected me for not indulging in alcohol, drugs, and tobacco. And they influenced their children to "hate" me for being different than their partying mothers. I sometimes believe the deep heartache I've endured from this painful estrangement was a cause of inflammation, high estrogen, testosterone, and insulin. No studies have shown this as a way to mutate cells and cause endometrial cancer. I'll most likely never discover why my body has betrayed me. This is a vicious and aggressive cancer. I need to get a grip on my mind set. Find ways to communicate with my body and figure this out. I was doing so well on an anti inflammatory life style at the end od 2024 and all through 2025. I naturally lost 37 lbs. and all y numbers dropped. My waist was once again 34 inches. I was feeling wonderful. Then I sensed something was wrong. I asked for tests and doctors were resistant to so I found a hoistic doctor. He changed everything. I went back to my specialists with the results of 33 vials of blood testing for things western doctors wouldn't think of doing. I had ACTIVE Epstein Barr Virus!! testosterone and estrogen off the charts. HPV 16 - 18. And blastocysts one-celled parasites. None of the doctors at my university based medical system will even discuss these things that they normally do NOT test. I've researched and studied and some places in Europe have done studies for these. I feel SO ALONE with my cancer care team.

My port was never infected. After 10 years there was a small piece of tissue growing on the end of the catheter. The nurses could flush it, but they couldn’t draw blood from it.
It had also moved, and that’s why it was replaced. I got an upgrade! The old port was a first generation model. The new one is much smaller and less obvious!
I would advise anyone, who has recurrent disease, to get a port. I have never regretted having mine.