From 5 to 9 and now 20 my ca125 rose again

[Roulasim]

hi everyone-I just got the unpleasant news that my ca125 is 20-what a disappointment…I’ve been on olaparib for 25 months all this time it was between 5 and since September it has started to climb..it went to 8 then to 9 and now 20…I feel anxious and depressed…as it seems olaparib doesn’t work for me anymore-I am in a shock because I didn’t expect this-I have been feeling great lately and I thought everything would be fine…I am tired,give me some positive thoughts please I really need them.

[Lyndy2]

Hi Roulasim

Yes me too! Olaparib doesn’t seem to be working, I’ve had a similar leap in ca125. I have had a scan and will find out results next week.

I felt so confident that the Parp would work for me as I am BRCA + and my oncologist referred to them as his ‘magic pills’.

Thought I might ask for a second opinion or a trial if it is confirmed to be back.

However, let’s not get ahead of ourselves. Your ca125 is still normal and either of us might find out that something else has caused this rise. We still have options, even if it’s back.

You are not alone with this fear and depression. It’s a horrible place to be but we will get through it xx

[Roulasim in reply to Lyndy2]

I am brca+ too-my oncologist has also told me that olaparib would definitely work for me…and now I feel completely disappointed-he doesn’t want me to have a scan yet since he says that it’s probably too early to show something…he insists on waiting another month-how is your ca125 now?what rise did you have?

[Lyndy2 in reply to Roulasim]

mine’s 45 and lept 10 points from the summer…which doesn’t look good. x

[Roulasim in reply to Lyndy2]

how long have you been on Olaparib?

[delia2]

Hi Roulasim. As Lyndy says, don’t jump to conclusions. Twenty is still normal though I know such a rise is scary. Is it possible something else caused it? Another test will show if it’s a trend. Even if it keeps going up the cancer may not show on a scan for months and the PARP might keep it under control. I know the waiting is terrible but try to appreciate each day that you’re not having chemo or symptoms. Keep us posted. Xx

[Roulasim]

what can have caused this rise?I am extremely worried because I didn’t expect this at all-I feel so good-no symptoms no nothing-I also had an ultrasound 3 weeks ago and it perfectly clear…I thought that Olaparib would have kept me in remission a little more since I am brac+

[Doglover1410]

it’s easy to say but hang in there and see what the next one says. I was on Niraparib for 3 years and 3 months, also BRCA2 + and I thought I was ‘the one’

Mine went up slowly, and the nurse kept giving me 2 weeks. Eventually they did a CT and found a lesion on my spleen. Then a PET scan which found nothing else.

I’ve just have my spleen and pancreas tail removed, and when I saw my oncologist last week he told me the Niraparib ’had done it job’

Yours is still in the normal zone, so id see what happens next time.

Got everything crossed for you x

[Roulasim in reply to Doglover1410]

thanks a lot for your reply and your sympathetic words-may I ask you why your oncologist chose Niraparib instead of Olaparib?what’s the difference?I am BRCA positive too…I had one of my worst days today-such a disappointment because I had invested a lot “on the magic pill” as my doctor called it

[Doglover1410]

I think because Niraparib was more available at the time? To be honest, I trust him 100% (and more!) so do as I’m told!

I took broke down and sobbed all night when I saw the first rise in CA125, I seriously thought it was all over, but last week he told me ‘i don’t know what to do with you as you have no cancer’

Try and stay positive, but keep on top of it. I really hope it’s just a ‘blip’ and you are the one!!

I am going to have 4 chemos as an insurance policy and he said that if it comes back again he would look at trials with Niraparib and other drugs.

I also think that my CA125 is very important FOR ME, as like you I felt fantastic (not so much at the moment post surgery!!) but my CA125 gives it away!

xx

[Roulasim]

what a positive attitude-good for you-I try to stay positive myself but all this journey is so hard that times like this I loose it…my oncologist told me that once I finish with Olaparib I won’t e able to use it again in the future are you sure you will be able to take niraparib if it’s needed?maybe my doctor here in Greece is not completely informed about the use of PARPS

[Doglover1410 in reply to Roulasim]

that’s what he said, but who knows. He won’t let me go back on just the Niraparib but maybe with a trial in the future.

I try and stay positive and trust that he knows what he’s doing.

Keep smiling and please keep me posted xx

[Roulasim]

thank you so much!wish you the best!!i will..xxx

[Cader]

Hi, Sorry to hear you are anxious.

I started Olaparib in May. I found it didn’t’ suit me; I had tremendous fatigue. I had necessary short breaks from treatment when I had to a have a couple of blood transfusions. A couple of weeks ago, I decided with my consultants support, to come off the treatment. Even on the treatment my last ca125 had crept up a bit. My consultant reassured me that, a gentle rise in ca125 should not cause concern. He said I would have a scan if there was a big jump in future. I am now on what they call ‘Wait and See’.

I feel so much better and feel myself for the first time since starting the journey. I am loving life and valuing each day , laughing with and hugging my children (when they want to 😉). I feel so grateful for all the treatment I have had and this chance to feel alive again. We don’t know how long for, nobody does. I really hope you will be okay. Keep calm, I know it isn’t easy , I try to put the worries to one side and only allow them to visit me occasionally.

[Summergold2]

I am so very sorry to hear about your rise. Good thing is you had 2 years! I have been on some form of chemo for almost 3 years, Carbo/Taxol six rounds Avastin for 1 year, Carbo/Calex, Olaparib, 4 months, and now Cisplatin/Gemzar. I am not braca.

Don't wait to get a scan. First reoccurrence CA went from 2,8,15,30,60......on Avastin. Got a pet scan not CT.....I knew it was back when the rise occurred. Second it went from 8, 12,15,22 on Olaparib for 4 months didn't work.........my oncologist now believes me when I say it is back..........It has spread more even more at 22........pet scan confirmed. Even though your CA shows in the normal range we are not "normal". This little beastie is working hard to take over and the best we can do is be our own advocate. It is so so stressful and disheartening at times but stay tough ENJOY every moment.

We have travelled this year to Galapagos, Sicily, Portugal, Ireland and will do Christmas on the Rhine............my team has been wonderful making sure I get to every place! Even had Covid for 5 weeks contracting it in Portugal........THAT was tougher than the chemo LOL.

Lots of tears have been shed throughout this process but I refuse to let it dictate my whole life! Its okay to cry, be upset and disappointed but in the end only you can bring your self up and make the decisions needed.

Many Hugs and strength to fight and carry forth!!!!!

Debbie in CALIF

[TxEm in reply to Summergold2]

Unrelated -- I wanted to add I finally have come to more of a place of peace too and my team has been great about helping me travel and do the things I want to do an it is REAT. I would love to hear about your trip to Sicily. we only spent one day there and I was ready to move in. The Rhine at Christmas is going to be amazing!

[OvacomeSupport Partner My Ovacome Team]

Dear Roulasim,

Thank you for sharing your post

I am sorry to read that you feel anxious and depressed after receiving your results. I can see that some of our members have sent you a reply and I hope this brings you some advice, support and positive thoughts.

Please know that we are here to support you if you want to talk anything through or just to seek a listening ear, you can contact us via [e-mail] or on our support line on 0800 008 7054. Our support team are available Monday to Friday 10am to 5pm.

Best wishes,

Sorcha

Ovacome Support

[Leniko]

I had a similar experience. Avastin worked for me for a looong time. Then, my CA started climbing 2 pts or so each time. My Onco added Cytoxan (oral 50 mg/day), my numbers are coming down. Talk to your Onco about a switch or an added med. Praying for us all! 🙏❤️

[Peggypip50]

My heart goes out to all of you on your journeys with this horrible disease. However, please spare a thought for those women, like my brave sister, whose numbers were rising in the thousands every few weeks and are now above 12,000. She would have been pleased to have numbers rising by just a few each time, She still manages to face most days with a positive attitude. I wish you all the very best.