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CA 19-9, sensitivity and responsiveness to treatment

Pancreatic Cancer | Last Active: May 28 5:18pm | Replies (17)

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@pdacbrca2

I’m a bit weirded out by this conversation, my CA 19-9 is at 1,000 but that’s a drop over3 months from 45,000.
I thought that was great news but it sounds like it is still awfully high? The reference range does say 0-35 U/ml.

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Replies to "I’m a bit weirded out by this conversation, my CA 19-9 is at 1,000 but that’s..."

That is an absolutely wonderful response and another reason (in addition to your BRCA2-positive status mentioned in the other thread).

The only data fresh in my head is from this video by Dr. Katz of MD Anderson:

He makes a rather grim remark about CA19-9 over/under 1000 at the 4:03 mark in that video. It's important to understand that from a historical and realistic perspective, but also important to note that this is from a presentation given in 2020 citing data from a study published in 2013 which collected data from years prior to that, so the overall basis of info might be 15 years old.

A LOT has changed since then, but not so much with the Standard of Care. If you're Stage-IV, surgery is most likely out of the question. The SoC drugs (Folfirinox or its individual ingredients, and Gemcitabine/Abraxane/Cisplatin) are pretty much the baseline options. Onivyde is a new variation on the irinotecan component of Folfirinox, and PARP inhibitors are the recently approved category of drugs for PanCan patients with BRCA1/2 and PALB mutations.

Every patient is an individual who responds differently -- statistics be damned! You seem to be doing very well for your condition. In order to keep it that way, I hope you are exploring every option possible for clinical trials beyond the SoC that will keep you that way. The trials can take a long time to get into, so proactive work in advance will have the pipeline filled with options by the time you need them.

Do all you can to stay healthy in every respect while doing that research (and hopefully enjoying life as much as possible), including frequent testing and imaging so you know when it's time for a treatment switch, and you'll have a great chance of beating the published odds.

Wishing you all the best!