CA125 up after month off Niraparib: Just had... - My Ovacome

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CA125 up after month off Niraparib

Rosebine2 profile image
10 Replies

Just had blood results, bit worried that after a month off my levels have gone up very slightly.

The past year has seen Ca 125 at 12 - 14, now its 16, I know thats still considered normal levels, but its the first time its gone over 14 in 15 months. Co-incidence ?

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Rosebine2 profile image
Rosebine2
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27-359 profile image
27-359

Mine fluctuated all the time. I found that once something stopped working,the CA125 went up hugely, not just one of two points.

Jenny

Ova3 profile image
Ova3

My physician said to be concerned if the CA 125 doubles or triples.

I understand your concern ( I’ve been the same). Mine also went up to 16 after it being steady at 11 - 14 for ages. The wonderful prof Christina reassured me that increments of a few was like putting on 1 lb in weight. Mine reduced to 15 the following month & has gone back to 16.

As the others have mentioned it’s when your CA125 leaps up you may well need further investigation.

Fingers crossed it will continue to stay roughly where it is & all will be well xx

Twink333 profile image
Twink333

Hi my ca125 has gone up and down between 10 and 16 for 4 years, with no recurrence.It's always a worry, maybe more so the longer I go without a recurrence. But I try and park it in a deep place in my mind.

Good luck and wishing you well.

thejoannabell profile image
thejoannabell

My CA 125 has been 5 (+\-1) for years since frontline, so I was freaked out when it jumped to 19 several weeks ago. Three weeks later it was 15, then 11, then 7. Going forward I have decided not to worry unless it goes above 35, and the trend keeps rising. Try not to worry!🤍

SophieZ profile image
SophieZ

There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early recurrence detection as well as matching with treatments based on genetic mutations. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan.

Most oncologists don’t use it for “clinical application” yet because its supposedly “new” technology even though its been around since 2004. MD Anderson just adopted it under standard of care at their practice 2 years ago. Your oncologist could order the test even if they don’t typically do so. This might give you a better idea of your situation instead of waiting and watching on scans or CA125. If any circulating tumor cells are found the original RGCC test can even test 53 types of chemo on your cells to find out if they are chemo sensitive.

There is a Bill in the Senate that was introduced in 2021 called the Medicare Multi-Cancer Early

Detection Screening Coverage Act that is pushing to have this test covered by medicare as a screening and early detection tool for the general public as well as a way for cancer patients to be monitored after treatment. I just spoke to my oncologist about it and after some insisting he agreed to order the test. This might help you have some peace of mind if you have a more accurate screening tool utilized like this blood test and a better assessment of your condition.

thejoannabell profile image
thejoannabell in reply to SophieZ

I have not heard of this either!

SophieZ profile image
SophieZ in reply to thejoannabell

It is something you have to specifically ask for since most oncologists as of now don’t typically have experience in “clinical application” of this test yet. If they don’t have a company that they are familiar with to send your blood to for a Circulating Tumor Cell Count (liquid biopsy) then it might be beneficial to looking into the RGCC group to get it done. ( rgcc-group.com/tests/oncoco... )They have labs all over. You would probably have to pay out of pocket if you go this route so try to get it covered through your oncologist’s referral first.

Rosebine2 profile image
Rosebine2

Im in the UK, dont think we will have even heard of it here !

SophieZ profile image
SophieZ

It is something you have to specifically ask for since most oncologists as of now don’t typically have experience in “clinical application” of this test yet. If they don’t have a company that they are familiar with to send your blood to for a Circulating Tumor Cell Count (liquid biopsy) then it might be beneficial to look into the RGCC Group to get it done. ( rgcc-group.com/tests/oncoco... )They have labs all over. You would probably have to pay out of pocket if you go this route so try to get it covered through your oncologist’s referral first.

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