I posted previously about my CA125 level rising ; I have just received my latest blood test results and it is at 115 .
I am due to finish Olaparib in early May and I’m wondering what I can expect after that .
I have had a couple of CT scans , the last one in December, which showed a supraclavicular lymph node at 15mm and some narrowing of the left ureter . I am due to have another scan in March .
I am really scared at the moment , if the Olaparib is keeping the cancer activity in check to some degree , what on earth is going to happen when I finish the 2 year allotted time on it.
It seems obvious that I am experiencing a recurrence but none of the medical staff will say that at the moment, it’s always a case of “ let’s see what the next scan says “
I think I would feel better if I knew what could happen next and what is available to me .
I was diagnosed in July 2022 , stage 4b HGSOC and I would be grateful if anyone who has been in a similar situation could let me know of their experiences
Many thanks and wishing you all the very best
Karen
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Norelo8
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Hi, I have had 8 chemo, surgery, 10 more Avastin and was on Olaparib but as soon as stoped Avstin last June, ca125 started going up and Pet scan and ct scan done and they could just confirm some inflamation under my belly button and one lymph node with active cells. My surgen and onco plus radio therapy team decided chemo is best for me so Im having 6 chemo done. Due to have 3rd one this week. Much milder than the 1st line. Not sure if that helps but any question let me know.
I have only had CT scans up to now , I have enquired about PET scan , but that doesn’t appear to be used as frequently in my health authority , I’m not sure why .
Could you tell me which chemotherapy you are currently receiving , please ?
I’m glad you’re not finding it as difficult as previous chemo and hope it does the trick for you
I was on olparib for 2 years in 2022 initial diagnosis in May 2020 after HGS 3b and my ca was rising at end and had my 2nd reoccurance but had surgery as had nodule near pancreas but im feeling well due ct scan today. I hope all goes well for you x
Hi Karen, I am 73. I was diagnosed October 21. Stage 3c, I had debulking surgery, 2 lots of chemo (carbo/taxol/avastin, then carbo/caelyx ) before going on to Niraparib - which also a parp. I stayed on this for a year and my CA125 rose from 6 to almost 200 before my oncologist intervened . Following that I had carbo/gem which knocked the CA 125 back again. My CA125 has slowly risen again is now 121 but I feel well. My oncologist and I think that for me it’s a balance between ‘quality of life and treatment. My advice would be talk to your CNS and discuss your fears. Sending best wishes 🙏 Katy
Thank you for message . It’s great that you are feeling well and maintaining a balanced look at things , I just seem to be having a “wobble” at the moment, overthinking and second guessing what may be round the corner .
Hi, I was on Olaparib in 2020 for about a year before my cancer started progressing again. I have had chemo for 3rd time since then and now I am on a trial that involves Avastin and Niraparib combined with immunotherapy. I've been on it since last March 2024. So far it has been keeping cancer stable. Initially diagnosed 2018 3A HGSC brca 1 mutation
Would you mind telling me which trial you’re on , please and are you in the UK ? It’s great to hear that the combination of drugs is keeping things stable for you .
Hello, I had carbo,tax then avastin maintenance. That was followed by 6 rounds of gem,carbo. Now I am on naparib . They are tweaking dose. Good luck to you. Try to enjoy every day.
I imagine that I will be offered further chemo , not sure what though . I had an allergic reaction to taxol , so it won’t be that , I shall just have to wait and see , I suppose . I am about to finish 2 years of Olaparib and I don’t know whether another parp would be on the table for me .
I shall try and enjoy every day , I’m just going through a bad patch currently, I’m normally a much more positive person .
hi, I had carbo/taxol, surgery then immunotherapy trial. It came back, so caelyx and another one (I forget the name!) and then on Niraparib for 3.5 years. CA125 began to rise slowly and a scan showed recurrence. More surgery (spleen and tail of pancreas) followed by 4 more caelyx. Then declared cancer free, but onc decided to do a 12 month post chemo CT scan, where small nodules were found so now on a trial with a drug and olaparib. Nodules have shrunk, CA125 is back to 11 and I feel good.
Rambled a bit, but just wanted to say there is normally ‘more in the arsenal’ (Onc’s words not mine!)
I’m sorry , I meant to ask , do you know the rationale for your having 2 parps? The team at my hospital are adamant that there is only one shot at a parp , which doesn’t seem to be correct.
I think that’s right as that’s what my onc told me too, but he then suggested this trial which was a way back on one. I think the rationale was that it had been ‘successful’ for 3.5 years?
And whilst I know it’s not easy, and I’m no good at it, try not to stress until you’ve had your scan. See what that says and then ask all the questions, especially about trials.
Hi Karen, I was diagnosed Feb 22 Stage 4b. Had debulking, chemo, Avastin and Olaparib. After stopping Avastin and continuing Olaparib my CA125 started to rise very slowly, once I stopped my Olaparib my CA125 rose above normal range not by much but enough to prompt my team to do a CT scan, nothing was visible so I had a PET scan which showed activity in 2 lymph nodes (included Supraclavicular). I was told no surgery but asked for a 2nd opinion even though I know it's unlikey. I was told I would be going on chemo (Carbo / Caleyx) but I asked my team to see if I can go on the GLORIOSA trial. It is a phase 3 trial for chemo with Avastin or chemo with Avastin and Mirvetuximab. They are running this trial at quite a few hospitals. I know a trial is the only way I can get some form of maintenance drug after my first recurrence (because I've already had Avastin and a PARP). To qualify your Cancer has to be folate receptor-alpha positive. My Oncologist didn't suggest this trial to me because she wasn't aware of it. I have a wonderful team but it pays to be aware of all trials and further treatment options because they are not always aware of everything. I would recommend speaking to OVACOME or Target Ovarian as they have empowered me to become my own advocate and always question where needed.
Can I ask did you go for the 2nd opinion and if so , where ? I’m jumping the gun a little but need to know what to do going forwards . Very interesting about the trial you’re on , I shall ask whether I would be suitable for that . Also, did you find it difficult to to get a PET scan ? My oncologist seems quite reluctant to agree to one .
I have asked for a 2nd opinion re surgery with Prof. Fotopoulou at Hammersmith. She did my initial surgery. I know if she says it's not possible it isn't! I'm not on the trial yet but have asked to be put forward. They will need to test my tumour to see if it's folate receptor-alpha positive. My Oncologist suggested a PET scan as my numbers were rising (albeit very slowly) because nothing showed on the CT scan. What was your Oncologists reason for not having a PET?
I had my debulking surgery with Prof Fotopoulou and would definitely want to go back to her if needed . I suppose I’m more uncertain who to approach if it’s a second oncologist’s opinion I would like to.
There hasn’t been a clear cut reason for not agreeing to a PET and I may need to push for that . I am due a CT scan in March and will see if that reveals any more information, if it doesn’t and the numbers are still going up , then I shall have to be more insistent. I do know that the oncologist really wants me to have the two full years of Olaparib .
Hi Karen, I have recently been taken off Olaparib after nearly 12 months, due to “marginal” progression. Oncologist said she wanted to nip it in the bud and I’m back on the chemo next week (2nd line) . Good luck xx
My last scan showed increase in the bilateral pleural effusion (not enough to drain) and also affected lymph node enlargement. I am going back on carbo/taxol xx
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