Feeling worried

[sticky3006]

Evening ladies. I’ve got myself in a pickle. Today I had chemo no. 6 for stage 3c ovarian cancer. BRCA2 positive. Before chemo 5 my ca125 was 13 but today before chemo 6 it’s 24. I can’t understand why and am now petrified that chemo has stopped working and cancer is returning. I spoke to CNS who said we could recheck in 2 weeks. I know level still within range but it’s another worry to stew over 😬. There never seems to be a day without ovarian cancer influencing my thoughts and everything I do. Xx

[RonLitBer]

I am not going to give you a response telling you all the things that can cause the number to increase besides cancer. That CA125 number is something that I have stopped looking at. I no longer check to see if it is going up or down. The reason is that it does what you said. The number (and its trend) basically starts to rule your life. It is very tempting to look at it. I am often asked what the number is and I respond by saying that I don't know, because I actually don't. I have found that my general well being is best served by not having this bit of information that is well known to not be reliable. It is about time they came up with something that did give an accurate indication and then that would be different but to do this and have everyone guessing and stressing seems a bit on the cruel side.

[sticky3006 in reply to RonLitBer]

What you say is very true. The rational part of me says not to stress and look at the bigger picture. I feel I’ve done myself proud with getting through two major ops, walking at least 10k steps every day, doing yoga, healthy eating and being positive for my daughters. I’ll keep up the good work and put this worry in a little box at the back of my brain! X

[Samjane]

Hi, I’m due round 5 of chemo for stage 3c, first reoccurrence, my ca125 was 52 when started this chemo. I have no idea what it is now as they don’t do bloods for it every time and they don’t write results down with others in chemo book. Onc doesn’t seem concerned by it he said he’d rather go with scans during chemo xx

[Lizz49]

Hi there,

I know it’s so hard not to worry but try to not get too focussed on those numbers...I didn’t have my CA125 checked at all during chemo, just once at the beginning and then after cycle 6. That’s how my onc wanted to do it and I agreed, I didn’t want to be fixated on increases or decreases etc.

Maybe mine fluctuated too between cycles but I didn’t know about it.

Your numbers are still really really low and am sure after cycle 6 they will reduce again. It’s very hard I know but stay focussed on the end result, how you’ll be feeling at the end of treatment, your final scan and ca125 result then. Our bodies play tricks on us sometimes and we are all very different and react differently to the drugs we are being given! You’re nearly at the end of your treatment now so stay strong and look forward to some lovely treats and relaxation ahead. Sending big hugs to you!

Liz Xx 💖

[lorraine71-Australia]

HI , I think RonLitBer, has given you good advice and yes you are still in normal range.

Chine up your CNS seems to be on looking arfter you and you have done yourself proud so keep up the good work ..take care Lorraine xx

[sticky3006]

Thanks for your wise words ladies. Nothing I can do for now and busy day ahead so will try and put OC to the back of my mind. Xx

[Luvliving]

That's the hardest thing when living with Cancer is not letting it take over your life. I'm also a 3 C going on three years no chemotherapy worked on me now on Avastin. But with high protein levels I feel I will have to look on to the next treatment. I'm not in pain and that's a huge blessing. I also have a genetic mutation. I can live with Cancer just wish it would stop reminding that it's there. Best of wishes to you fellow warrior ❤

[sticky3006 in reply to Luvliving]

Thank you for your reply. I know that I must try and stay calm but panic sets in and all rational thoughts go out of the window! Did you not respond to chemo initially? I had a good drop in ca125 after first two chemo’s so I was expecting that to continue until the end of first line. I’ll just have to try and carry on as normal (whatever that is these days) for my children’s sake and put on a brave face xx

[Luvliving in reply to sticky3006]

I don't know if I ever got a good response from Chemotherapy. My CA125 dropped the most after surgery. I had debulking surgery which included total hysterectomy colostomy and my Cancer was cut off of my bladder and then received Chemotherapy for about 4 month. I had low CA125 for about 6 months after that then numbers went crazy.Tried more Chemotherapy did not respond. So last February I started Avastin. At first Avastin was easier than Chemotherapy. Now it's getting harder. High blood pressure and kidney problems. My friend gave me a necklace before she passed away from Cancer. It's says Strength, Hope, Courage & Faith. It takes all 4 to make it through each day. That's why we are warriors ready to fight our next battle. Sending hugs