Update CA125 and CT scan results : Hello again... - My Ovacome

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Update CA125 and CT scan results

Norelo8 profile image
12 Replies

Hello again ,

I just wanted to update and see whether anyone has any advice for me really .

I got my latest CA125 result yesterday , it’s now at 150 .

My scan result shows 2 new enlarged lymph nodes in the rear abdomen area ; the previously reported supraclavicular lymph node and one in the chest area have remained unchanged.

I was due to finish Olaparib in June .

In light of this progression, my oncologist has said there are two possible routes: the first would be to wait and see what develops with the option of further chemo down the line , the second to see whether I am eligible for the following trial :

“Phase 2 study of the ATR inhibitor Tuvusertib with the PARP inhibitor Niaparib ,

OR, Tuvusertib with the ATM inhibitor Lartesertib

for participants with BRCA mutant and/or HRD deficiency ovarian cancer that progressed on prior PARP therapy . “

I was given this information yesterday and feel at a bit of a loss as to what to do . I would really value any thoughts and suggestions

Many thanks and best wishes to everyone on here

K xx

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Norelo8 profile image
Norelo8
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12 Replies
candyapplegrey profile image
candyapplegrey

I have no firsthand knowledge of the trial but I would at least try to see if you're eligible and it then is an option. Do you trust your team? Is it worth getting a second opinion? Sorry not to be of more help. You could try ringing Ovacome. Good luck! xx

Norelo8 profile image
Norelo8 in reply tocandyapplegrey

Thanks for your reply candyapplegrey , there doesn’t seem to be much information about it , but you’re right best to see if I’m eligible first .

Best wishes x

DianaPrince_ profile image
DianaPrince_

I agree with Candyapplegrey, progress with the trial to see if you are eligible. Meanwhile get a second opinion. There may be other treatment options as it sounds like your recurrence is localised to a few nodes. If you're in the UK you can request an second opinion at The Marsden or The Christie.

SopSinger profile image
SopSinger in reply toDianaPrince_

... or any major cancer centre, so it might be possible to transfer without a massive travel burden.

Doglover1410 profile image
Doglover1410

hi, I was on Niraparib for 3.5 years but I had a recurrence, with more surgery followed by more chemo. I couldn’t go back on Niraparib but my oncologist decided to do a 12m post chemo CT scan, where they found 3 or 4 nodules. My CA125, which had previously been a good indicator, remained low at under 10.

He then suggested a phase 1 trial of CERALASERTIB and Olaraparib, basically I think to get back on a parp

I’ve been doing it a year now, with (and I hope I’m not jinxing it!) reduced and now stable disease.

Could you go to an appointment about the trial and see what it’s all about? That’s what I did and signed up, but at least you’d be able to discuss with them.

BRCA2 +

Hope that’s helped xx

PyjamaDay profile image
PyjamaDay

Hi, this is the DDriver trial I think:

clinicaltrials.gov/study/NC...

This was initially proposed as a possible option for my sister. My understanding was that it would require a new biopsy being taken.. Worth looking at the inclusion criteria as I was trying to find out if secondary surgery was allowed before going on to the trial, and it sounds like you can have 1 additional line of platinum-based chemotherapy before study entry. It sounded, on paper, relatively manageable in that it involves tablets taken at home.

I couldn't get much clarity from my sister's team on either of these inclusion points though, and then her oncologist decided that the Gloriosa trial would be a better option for her:

clinicaltrials.gov/study/NC...

Maybe Gloriosa might be worth looking at as another possibility for you too? This requires high folate receptor alpha (FRa) expression, which is established by testing of a tumour sample (can be the old sample retained from the first surgery). A threshold of 75% expression (or more) is needed, but the oncologist said that the majority of HGSOC people will meet this. Looks like only one prior line of chemo is allowed.

As I understand it, both these trials are time/circumstance specific; with DDriver, you will have to have progressed while on a parp, and per current NICE guidelines you won't be given another parp having had a recurrence while on one; with Gloriosa, you are only allowed one prior line of chemo. All to say - these particular trials may not be available to you down the line if further treatment is needed (though there's nothing to say that new trials might not come along that would be possible).

My sister's CNS said that the standard of care chemo will still be available as a fallback if she did decide to go ahead with a trial and it didn't work as hoped. Perhaps ask your doctor if that's their take on it too?

And just a couple of other things:

There's a trial finder on the Target Ovarian Cancer website that could be worth looking at for any other options: targetovariancancer.org.uk/...

I read a bit about the Soprano trial running at the Marsden, which sounds like it could be relevant:

targetovariancancer.org.uk/...

Professor Christina Fotopolou did a presentation at the Ovacome day a couple of weeks ago on surgery for recurrent OC. There will be a recording available shortly I think, and might be something to think/ask about.

Norelo8 profile image
Norelo8 in reply toPyjamaDay

That is a really useful response, PyjamaDay , thank you so much ; not for the first time in my life I wish I had studied science , rather than languages at school , as I feel so ill equipped to understand a lot of what I am reading but so much information there .

May I ask , what decision did your sister choose to go with ultimately ?

Norelo8 profile image
Norelo8 in reply toPyjamaDay

Sorry , I see you did say the Gloriosa trial

18Hilltop profile image
18Hilltop

hi

Please can you tell me where you are from are you in the UK.

The reason I ask is that I am BRC2 and was on Olaparib which stopped working in Sep. My CA125 was still in range but the fact it was going up whilst on Olaparib my oncologist acted quickly as I demanded an early scan. My scan confirmed new growth in the same place my abdomen .

By the time I started chemo in Jan my cA125 was 38 so just out of range it is now 9.3 and I have one more chemo to go. However, I was told I could not go onto another parb as once one doesn’t work none of them will?

I do not know what my plan will be after I finish chemo and am worried as this is my 2nd reoccurrence.

Your options sound promising. Xxx

Norelo8 profile image
Norelo8 in reply to18Hilltop

Thank you so much for all those helpful replies , DianaPrince, SopSinger, Doglover1410, 18Hilltop, and PyjamaDay for giving such a comprehensive rundown of the possibilities.

In a new twist , I have received a phone call from the hospital today to say that radiology have informed me oncology that I would not be eligible for the DDriver trial , correctly identified by PyjamaDay , as my disease is “ not measurable “

On the one hand , this does initially sound like good news , but on the other there is still disease present and my ÇA 125 is 150 ; it also begs the question why was I offered the trial in the first place ?

I have now been given the option to continue with Olaparib till June , when my 2 year period ends , or to go on endocrine therapy . My first thought is to finish the Olaparib, but I shall still think about a second opinion.

18Hilltop , I am being treated at St James hospital in Leeds ,so the Christie in Manchester may be another possibility for me .

Thank you so much for your support , this forum is wonderful as are all the fantastic women who contribute to it .

Best wishes K xx

Gerontious profile image
Gerontious

Hi K,I'm afraid I don't have any advice really other than you can go with your gut and your oncologist's advice. I've had a similar dilemma in that I started naraparib in September 2024 following carbo/paclotaxil chemo. My CA 125 has risen steadily since starting it but a scan at the beginning of December was clear. However the CA125 continued to rise and a scan in March showed further 'nodules' in the retro peritoneum and suspicious nodes in the pericardial space. My CA125 has risen now to a staggering 4,500 so I've been offered carboplatin/gemcitibine chemo or just carboplatin. My oncologist's advice is to have the two so I just have to go with that.

I wish you well with whatever you decide.

M.

Norelo8 profile image
Norelo8 in reply toGerontious

Thanks for your reply , M, I really hope your treatment plan goes well for you .

All the best , K x

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