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@mnewland99

ncteacher I haven’t seen any posts from you for awhile now. How are you? I just noticed this post today and thought I would throw in my 2 cents since this is my issue now. In late June and early July my CA19-9 climbed 2 points from 17 each session (ie 19, then 21). I also had a CT but not MRI (I have liver lesions and abdominal nodules). That CT showed decrease in size of my lesions. I also started to have some occasional sharp pains in my left side. This small increase had me concerned. My oncologist (not pancreatic) at infusion center seemed almost annoyed with me for being concerned as they congratulated me on my CT. I did have a small hernia which they said was new, but of no concern to them. I happened to also be experiencing some cardiac arrhythmias at this time. My birthday was also after mid July so my infusion oncologist put me on a chemo vacation for 1 week but I asked for 2 weeks because I was having some extended birthday celebrations. I feel this was a huge mistake as when I returned my CA19-9 was now 97 (from 21). I had another infusion the following week and my CA19-9 was now 197. It took a bit convincing by me for my infusion oncology to admit that “changes are occurring”. He tried to offer that CA19-9 tests can have different upper limits! Yes, 34 or 37! So now I’m getting imagine next week (PET and MRI) and will meet with my pancreatic oncologist following those imaging results to see if there is a next step for me. So yes, everyone is different, but the first question I would ask myself is has the CA19-9 been a good indicator of your cancer status? For me it always was. Also, there can not only be growth of existing tumors or lesions, but appearances of new modules, lesions, etc. which might have caused that increase in CA19-9.

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Replies to "ncteacher I haven’t seen any posts from you for awhile now. How are you? I just..."

Hello! You're kind to inquire after me. I check into the board daily, but backed off from posting for a few reasons, including health. I'm hanging in there. I've had a rough summer, no thanks to a gastric output obstruction. I could consume and digest food, but the blockage kept it from moving into my small intestine. A duodenal stent didn't help; as it turns out, the pinch point was below the stent. Anyway, since the beginning of June, I've had two surgeries (duodenal stent and replacing the ureteral stent), 15 days of higher-dose radiation to shrink the blockage, a short hospital stay for TPN, and reduced nutrition and hydration, all of which have left me weaker than I was in May. I'm getting fluids twice a week, and I received 2 units of blood on Wednesday because my hemoglobin stays too low.

The radiation did help, as my stomach is better and I'm eating solid food. (Thank heavens--I couldn't tolerate the "full liquid" diet, AKA mush.) But the problem hasn't been permanently solved, of course, so we're going to consult with an HPB surgeon next week to discuss options. My oncologist is campaigning for a GJ (gastric-jejunum) bypass, in which the bottom of the stomach would connect to the jejunum (small intestine), bypassing the duodenum and pinch point below it. Meanwhile, chemo (Folfiri) is set to resume on Tuesday 8/27, and I hope we get a good response. My CA 19-9 is up to 217, in part due to inflammation from radiation, so I'd like to knock it down again for a while. My brain wants to do things--the library reading tutor program starts next month, for example, and I'd love to volunteer--but my bod just hasn't been cooperative. I'm hoping for better days ahead. Or, to quote my blood type, B positive--that is, be positive!