CA19 increase, gaining weight and feeling better - Confused

My CA19-9, which I have had done 13 times!, shows a lot of fluctuations from a high of 496 to a low of 28. This past month it went up 40 points. I had a recent PetScan (#3) and it showed great improvement with no new mets. I am currently taking a chemo break to restore my red blood count after 12 5FU and 14 Abraxane/gem sessions. So, I am eating well, exercising every day, sleeping great and being checked by oncology every 4 weeks. I trust the PetScan more than the C19-9 but will continue to have it monitored to check the trend of the scores. It’s hard to know what NOT to worry about, right?

@maxmom ,

Is your cancer PDAC? What type of scans (CT/MRI/PET) have you gotten, and what type is next? How often are you getting the Gem/Abrax, and how often are you getting your CA19-9 tested?

I've insisted on getting my CA19-9 tested biweekly (at every chemo treatment) and not regretted it. It can bounce around a bit for various reasons, and the more often it's tested, the easier it is to "smooth" the data and see a real trend.

Although your goal is to see one tumor go from borderline to definitely resectable, the one thing you don't want to see is a metastasis to a distant area. Stable, borderline-resectable disease gives you a chance to increase or change your chemo regimen, perhaps adding cisplatin if you have a DDR mutation such as ATM.

And although imaging is (the non-invasive) king, it can't detect some smaller metastases. At least two patients on this forum have had a surgery postponed due to rising CA19-9 even though no mets were spotted on imaging because it suggested the possibility of metastatic disease they would not know to remove. You might ask your oncologist (and ideally the surgical oncologist) if they have a threshold for CA19-9 (both an increased amount and an absolute level) that would cause a delay.

Overall health (performance status) is also a good positive indicator in a surgeon's decision making process. I'm glad to hear you're feeling better on the GA. Keep doing whatever helps you feel good and take all that positive energy with you to the next scans and appointments!

Wishing you all the best. 🙂

--mm

Thank you. It's adenocarcinomas on the head with vein and artery involvement. We got a CT Scan, MRI and PET at diagnosis (Dec. 2023) which showed spread to lymph nodes but that was all. Did 6 rounds of 5FU, which didn't seem to make an impact. Went to Mayo and did CT and PET/MR plus a laproscopic procedure in March. Should no spread. Swithced to Gem/Abrax. and was supposed to do 3 weeks on/1 week off but first round killed platelets so oncologist switched to every other week. Mayo said to come back after 6 rounds - that will now be June 19. Will get CT and PET/MR.

I hope you are right. I guess I was most concerned because the Gem/Abrax was supposed to be 3 weeks on/1 off but after one round the platelets were too low so oncologist switched to every other week. But we will have CT Scan and Pet at Mayo in June so I guess we will know more than.

I have been doing Gemzar every other week since beginning it last July with a break around October for liver resection. Until very recently it was successful in keeping tumor growth at bay and keeping CA19-9 down.
Many doctors are going to the bi-monthly plan to preserve your chemistry and allow you to stay as healthy as possible . (For whatever is next!)

My husband has been doing every other week for 5 months and 19-9 still normal, tumor same size.

He is just starting his third year in a trial of gemabraxane and pamrevulab.

Has anyone had Whipple surgery with a portal artery resection?