So I have been on Olaparib since August, ca125 increased from 30 to 32 in Feb no major panic I was told, as I had been stressing last year whilst on chemo about my marker..... My professor decided not to focus on the CA for the past 3 months, so today results came back at 63.2.... I am totally gutted, has anyone had this happen ????
Loren x
is your professor concerned about your CA125 being 63.2?
Only got the results from bloods done today at oncology ward , so note will be sent on to Professor as my next scan wasn't due until August, so hopefully they will bring it forward, was hoping Olaparib was working 😢😢
My ca125 went up from 11 to 32, I had constipation issues at the time. It was retested one month later and was 20 and after another month back to 11. I was told there are reasons other than the cancer that it rises as was my case at that time. Hope this is the case with you x x
Hi Lorent.Yes it's happened to me.Ive been on Olaparib since Jan 2016.
My ca started rising last year .CT scans were neg,so I insisted on PET scan.Results of PET showed tumour back in original ovary and right ovary and seedlings in abdomen.As I was inoperable on diagnosis,I became operable due to Olaparib as it hadn't come back widespread.Im still on Olaparib.At present another PET has picked up tumour in left of pelvis and CA rising again.Team will be meeting to decide next steps.
I know how gutted you feel but,it's only a blip.Olaparib is a maintenance drug and it's working,it's keeping it maintained to the one area,so that's a good thing.My CA125 has always been my indicator and my Onc agrees.xxx
It's amazing I was feeling so good up to getting those results 😭 , just need to keep myself positive until I meet my professor hopefully next week, hope they will keep me on the olaparib I really thought they would take me off it and tell me it wasn't working but your story has given me some hope thank you so much Annie, which hospital do you attend, I'm under professor Kelly at the Mater ....
Hope all goes well for you
Loren x
Hi Lorent--mine started to rise slowly, then a bit faster (5, 7, 9, 11, 78, 167 now) and I just had a scan and TWO oncologists (one 2nd opinion) said very little disease and stay on Olaparib and don't do anything else for now as its keeping things VERY small and slow growing. I will get another scan in 4 weeks but they were anything but worried. I will post more about me this weekend but it actually put my mind at ease at bit that I can wait, that the Olaparib is "working" to keep things small or slow growing and nothing else for awhile. They see so many different reactions with this drug and sometimes giving it time to show major somethings.....will take time.... and to me that's time NOT on chemo. Wishing you luck and that the ca125 comes down but even if not, it does not mean you're done with it or that you necessarily need to do anything else for awhile. Hope that helps and doesn't create more anxiety. xoxoxoxoxo Judy
Hi Judy I was hoping to hear from you, I think I started olaparib a month after you so always following your posts, I remembered you posting that your Ca125 was in the rise and wondered how you were doing, yesterday was pretty stressful but after hearing from yourself and AnnieH I am in a much better place, I just had a call from my oncologist saying I can either have a scan next week or wait until next month to check ca125 , so my decision is to wait
Thank you so much you have most definitely helped with my anxiety wishing you well
Loren x
I'm sorry to hear that because that can be can be challenging news. It's happened to me. But first, don't panic. I had medicine I thought was working fine and it jumped hundred points in between infusions. But there's always hope. It could indicate that it's not working any longer but it could also just be an interesting development and they'll keep you on the medicine probably just to make sure there's a trend that and not just an anomaly. They kept me on mine through the cycle and eventually it stabilized and after the next cycle it went down again. I'm not sure why some of these things happen but again even if it does there are other medicines and lots to try.
My CA-125 is currently at 124 but it has jumped up and down and up and down and then scraped upward and then finally jumped back to down over the last 9 months on the same med so just leave that to the doctors to be worried about and assume all is well until it is time to make a decision.
Appreciate your post! Thanks! Have you had abdominal pain when your number rises? I jumped to 22... started Lynparza... and now am at 50 with abdominal pain. In a months time. I have had flu like symptoms and bowel issues from the drug and hoping the pain is from that.
Am so glad your number is declining ... I too try not to worry over the number. And your comment is right on and I need to let the docs deal with it: But for me... it’s the abdominal pain that is a constant reminder that something is going on...and worried me 😞 xoxo
What kind of abdominal pain? Is it really severe and all throughout or is it and define spots with like jabs and pulling and twitching that jumps around?
If it's only ever in one spot and the pain happens at random times in moderate amounts or perhaps happens with enough to take your breath away I guess it's possible it's a tumor. On the other hand, if you had a hysterectomy or any sort of surgery down there, it's possible it's scar tissue. As my stomach area heals inside, apparently scar tissue develops and can cause a lot of that pulling in tweaking feelings.
I don't know if that's what it is for you but for me it's these sharp random pains and they've gone away over time and then they come back again. There's one that seems to reoccur quite regularly in the back area of my rib cage. It has nothing to do with the tumor whatever it is. They believe it's just scar tissue.
Thanks for your message! I had extensive abdominal surgery .. they had to remove everything along with my appendix, gall bladder, omentum. and had a double bowel resection15 months ago.
My pain can be sharp at times... right where my ovaries were. Then I get sharp quick pains in my abdomen too. The other pain I have is tight and is a dull ache until I eat. Then it can get sharp. I eat a little bit of food... gets very full and expands and hurts for about 15 -20 min then is just really full.
I pray it is scar tissue but not sure. I worry that it is the cancer back and my number did go up however I had just started Lynparza and this is common. But the pain also could be fluid ... astecis perhaps. I go on the 16th for my ct scan. It’s not the pain that I can’t live with... it’s more worry that the cancer is back. And I might have to have more chemo. I am sure it’s the same for you... and sorry we have to go through this. Please keep me updated on how you are doing. I pray for all of us fighting this horrible disease 🙏😞
Yes. I have been on Zejula since October. My CA went from 15 to 35 by January. Scan showed nothing. I was sure I would be having chemo again. I went to a nutritionist who put me on a cleanse to detoxify and just get rid of inflammation. I just went for CA again and it actually dropped 4 points. Not major but at least it didn't go up.
I would like to think it was inflammation and that the detox helped.
Are you scheduled for a scan? I'm thinking yours could be inflammation of some sort as well.
Just hang in there and stay strong. Sending positive energy your way.
XOX
Marisa
My CA jumped to 50 when I started Lynparza and now I am having abdominal pain as well. This has all happened within the last month. Not sure if it is the cancer spreading or the pain is from scar tissue from all the surgery. I too... was so upset over the number of 50 but am aware that so many factors can drive that number up.
Have you ... or anyone else had abdominal pain when the number rises? I am trying to distinguish if this pain is associated with the CA rise or if it could be adhesions.
Praying for you and all of us 🙏
Thank you Cyndyc, I have no abdominal pain, just feeling tired , fingers crossed
Loren x
Despite a clear scan and my CA going down, I still get pain in my abdomen. I convinced myself that it's scar tissue as well as my intestines are changing due to this detox.
Hope your pain goes away!
XOX
Marisa
Thanks so much Marisa! That is good to hear and it just makes sense when you have so many organs removed that there will be pain from adhesions. Makes me feel better hearing from others experiencing the same thing. xoxo
I have been as high as a 3,000 and as low as15. It's just a number don't waste good days focusing on bad numbers. Live the life you have been given 2 the fullest. Sending hugs 🐸
Amen! You are so right and thank you! I try so hard.. but it’s this pain that is a constant reminder. I need to get a grip with my mindset again after this setback and get back on track. Hugs! 💖
Keep your chin up and this hasn't happened to me ... yet. Had my ca125 run a week ago and I keep forgetting to check the results... or more aptly, afraid to check the results. I've been on Niraparib since December and it eliminated the cancer completely but having to check the numbers makes me a bit queasy. Hang in there
Good news!
Good news!! So happy 😀
Not Good News
Good news today after a sad weekend
