I remember the days when I was excited about my CA 125 dropping six points, never mind 6,000. But after chemo four-and-half years ago, the tumour marker was in single digits. Anything lower than 32 is considered normal. So the closer we get to zero means remission, health, life.
In a ghoulish way, I’m sort of fascinated by these numbers — how different they are for different women, how they change with such speed as our disease advances. Do we trust that they still indicate disease if they once did? I don’t have answers (and neither do my doctors!)
After three months of Cisplatin and Gemcitabine last summer, my CA 125 was 45. We knew it wasn’t working. I took a break until the fall to heal from the chemo. In September, CA 125 jumped to 246, a month later, 459, two weeks later, 820. Double double double trouble.
I started Doxil (Caelyx) two weeks later. I’d heard that it often takes several treatments to see the CA 125 drop on Doxil (Caelyx) but a month later I was surprised to see 760. Another Doxil (Caelyx), another reduction to 270! After Doxil #5 (Caelyx)… the party was over. CA 125 climbed to 480. I did Doxil #6 (Caelyx) with a heavy heart… I knew I had used up yet another chemo and the CA 125 confirmed it: 1,200.
I was in a holding pattern this spring waiting for the ARIEL2 trial using Rucaparib (one of the PARP inhibitors) and donated a lot of blood at the lab in preparation. Two weeks after my last CA 125, it was 2,000. Another two weeks, it was 3,300. I started the trial at the end of April 2015 with high hopes that the new drug would make me well.
After the first month on the trial, the CA 125 rose to 7,200! After the second month, 9,100. After the third month, I was out of the trial — just not doing it for me as fatigue and pain increased. Ironically, my CA 125 finally dropped to 7,800.
Two days later I started Taxol (Paclitaxel) and ten days later, lost my hair. Three weeks later I had blood work done in preparation for Taxol #2 (yesterday). Could it be? CA 125 was 1,700!
Now I agree if you think that’s still a pretty big number but I’ve been in the 4 digits since April this year. Who knows what Taxol #2 will bring?
I’m approaching 5 years with ovarian cancer since diagnosis in September. I’ve endured 5 chemos and the Rucaparib trial. A little more time… that’s all I ask. And now on my Dexamethasone night (a steroid given before the Taxol to knock out nausea), I see it’s nearly 4:30 a.m. I should try and get a little sleep. Later today I will celebrate my daughter’s 23rd birthday — this is what I live for now.
What a beautiful daughter. Happy Birthday! By the way, who is on your masthead for your blog?
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Thank you Constance. The jumpers are Baxter, my almost-26-year-old, my partner Laurence, me, and Kate, my birthday daughter.
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oops…. my almost 26-year-old son!
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Fantastic news! So very happy for you. Happy, happy day to you and Kate. oxo
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Thanks Susan. We had a lovely day with sunshine, beach and wine.
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A day to celebrate life. Happy for you both.
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Thank you Maureen. It was a lovely day.
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Thanks for continuing to share your story.
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And thank you for reading it Ariela. I’m sorry your latest adventure was shelved. Here’s hoping you plan a new one soon.
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Good old taxol, huh? I’m so glad you’re responding. Enjoy your daughter’s birthday!
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Thanks Deb. Yes, who knew an old drug would be so powerful.
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Happy Birthday to Kate! Here’s hoping the numbers continue to drop, and you can celebrate not only Baxter’s birthday ( I assume it is soon as ‘almost 26’) and Kate’s next birthday and so on and so on….
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Thank you Carla. Isn’t it great to see our children growing? I saw your daughter was celebrating today. All the best!
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Kate and Baxter – 2 exceptional people who are very much worth ” living for.”
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Thank you Barbara! My kids are pretty cool and making their way through life with panache! Look forward to getting together. Will we ski this winter?
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Yes to birthdays, and decreasing CA 125 numbers, and taking today to celebrate life. You are so beautiful.
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Thank you Chris. Here’s to the good life — not necessarily a long one, but a good one.
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I know the CA125 chase game, Rochelle. You’re doing GREAT. Squeeze every ounce (out of life, not the chemo!), girl.
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Thank you Casey. Life is good.
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In a study serum CA125 levels determined before surgery and 3 months after surgery were evaluated as independent prognostic factors for survival. A study evaluated whether the pre- and postoperative determination of CA 125 improves the prognostic information at the time of primary operation.
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I just want to say thank you for sharing. And I’m womdring if you may have met my mom during the ariel2 trial. She did ok for about 8 months but then it stopped doing its job. She was then back on Carbo, had a reaction, paclitaxel, then ca 125 shot up and she has ascites. There was talk of a gemcitabine trial but that’s out now due to all the poking and prodding it entails. She has decided on caelyx and we’ll go from there. She was also diagnosed just over 5 years ago. Your stories very much parallel each other.
All my best.
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