High CA-125, yet no symptoms

[lucybake]

I was diagnosed with Ovarian serous adenocarcinoma, Grade 3c in 9/2017. I had a TOTAL hysterectomy, and debaulking. First round of chemo was carbo-taxol - responded well. Two years later I had a recurrence and had a second round of carbon-gemzar and avastin and responded well. In March of 2020 I started Zejula and have been on it ever since. My CA-125 has been climbing since September 2020, and is now 336.1 (as of 11/8/21. Does anyone else have high counts without any symptoms? I continue to feel good, except for fatigue in the pm (I'm 77 so that is to be expected!) I think my oncologist is a surprised that I have no symptoms with such a high CA-125.

[PrincesTobi]

I was diagnosed with ov cancer 3 c in October 2019. Had full hysterectomy followed by taxol/carboplatin and then maintenance treatment. CA125 kept rising but scans have all been clear. CA 125 up to 480. Doctor put me on letrozale and now CA125 has started to fall. I feel fine and doctor thinks cancer has stabilized.

[lucybake in reply to PrincesTobi]

Thanks for responding! That's interesting that your doctor prescribed Letrozale. Do you have any information about it? I googled it and found that it's used to treat breast cancer in postmenopausel women.

[PrincesTobi in reply to lucybake]

I think there is more scientific information on the benefits of using tamoxifen for ovarian cancer but apparently there is some results for letrozale too. My oncologist is also a gynecologist. He did some genetic testing. Don’t know if that influenced his thinking. All I know is the ca125 is going down for the first time since my surgery. And I am thrilled. Hope it continues.

[WendiC]

I take Zejula also and my CA 125 is 252 - we are watching it as I was on 100 mg a day - so we increased to 200 mg a day and will do blood test in 30 days to see what’s up. I feel fine. Even after increasing the Zejula. But my neuropathy in ny left foot makes me crazy .I am 66.

[WildflowerTheWarrior in reply to WendiC]

I also have neuropathy in both feet. I’m on gabapentin which helps but I’ve recently tried CBD cream that I put on my feet before bed. I put thin sneaker socks on to keep the cream on my feet. Definitely helps.

[WFBCC in reply to WildflowerTheWarrior]

Wildflower, I too have neuropathy in both feet. I'm interested in knowing more about the CBD cream you use. Do you buy it online, how did you decide on which brand, how long have you been using it, do you use it and still take gabapentin? I have a high intolerance to drugs and gabapentin is one I can't take. I recently started using collagen powder to ease some of the neuropathy pain. Only been using it for 5 days but have seen slight improvement especially at night.

[WildflowerTheWarrior in reply to WFBCC]

I do still take Gabapentin. The CBD cream was recommended by my podiatrist. It’s 1,000 mg. I was just about to run out when I went to a dispensary. I told them my problem with neuropathy. And they recommended something immediately. It’s 250mg of CBD and 250mg of THC. You do NOT get high. THC is not absorbed in the blood stream. You would pass a drug test, she said. Anyway I used it last night. No issues with my feet.

[WFBCC in reply to WildflowerTheWarrior]

Thank you for the information, Wildflower.

[Bear202 in reply to WFBCC]

Love that tip! I also take B6B12,thiamine lions mane and alpha lipoid acid to help!

[weillCornell in reply to WildflowerTheWarrior]

What is the brand of cbd cream you use

[WildflowerTheWarrior in reply to weillCornell]

Nordic Goddess. and Sun Med.

[Nanfoster in reply to WildflowerTheWarrior]

What strength is your CBD crème, and brand. I have neuropathy in both feet, hands as well. Thanks

[Nanfoster in reply to Nanfoster]

It’s been answered…

[WildflowerTheWarrior]

My CA125 was 29 at the highest and I had Stage 3b high grade serous. Weird isn’t it? I’ve met people with numbers in the thousands. Guess it’s an indicator, not the whole story. Good luck to you.

[lucybake in reply to WildflowerTheWarrior]

Thanks for your reply. It seems like the ca-125 can be all over the place in similar situations and no matter what the grade is! It makes me wonder how reliable it is. Yes, it’s “weird.” Also, it’s weird that I can eat anything I want and not gain weight! Wishing you the very best.

[WildflowerTheWarrior in reply to lucybake]

I wonder what’s going on with not gaining weight? Is it a concern? Wishing you the very best too. ❤️🙏

[lucybake in reply to WildflowerTheWarrior]

I’m neither gaining or losing. I’ve maintained a pretty consistent weight for a long time. My dr. Is not concerned.

[WildflowerTheWarrior in reply to lucybake]

Oh that’s good to hear.

[WFBCC]

Good day, Lucybake. You and your doctor may have already considered that a high CA125 might mean something is going on somewhere else in your body.

There's a school of thought that believes a high CA125 without symptoms should not be treated until the cause is found. You mentioned not gaining weight. Maybe that should be explored further.

I've learned a lot since my December 2019 OC journey and it saddens me to read about others fight to overcome cancer, or at least understand it. I'm currently in a survivorship program but rarely does a day go by that I don't think about recurrence.

Stay strong and please post with an update. Wishing you a happy holidays!

[lucybake in reply to WFBCC]

What is a survivorship program? Same as Maintenance? Even though my Ca-125 is 350 I will not see my dr. until January 8th unless I have any symptoms. Happy holidays to you too!

[WFBCC in reply to lucybake]

The survivorship program was set up at the hospital and, yes, you can call it maintenance.

[Dollie22]

Hi Lucy,I normally get a CT scan if my marker starts to rise over 2- 3 consecutive readings - and if the CT is clear( with a rising marker) then a PET scan to explore further . I’m not sure if that helps.

Wishing you all the very best

D

[lovemy3dogs]

My CA125 was over 4000 before I had my debulking surgery in 4/2019. I did 18 weeks of chemo and when I finished I was put on Lynparza for two years. During that time I had my blood checked monthly and my CA125 stayed around 12. My oncologist said that since my CA125 was so high when I was diagnosed (stage 3b) that if it starts to go up that will be a good indicator. Some people’s never goes up even when diagnosed. I will have my next CT scan after 3 months off meds but he said if I wanted to skip it I could pending my CA 125 results. I chose to have it. The bottom line is how were your numbers before? If it’s reactive and it’s gone up, I would request a scan symptomatic or not. Better to catch anything as early as possible.

[Gabbygoose in reply to lovemy3dogs]

Recently have a rise in ca125 from 13 to 57 scheduling all kinds of scans my initial diagnosis was dec 2018 with aca125 of 4500 and ascites I enjoyed a nice cancer free period now here we go again

[lucybake]

Thank you for replying - my CA-125 was 96 upon diagnosis prior to surgery. I'll consider your advice!