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Wed, Aug 5 11:49am · CA 19-9 and pancreatic cancer: What do the numbers mean? in Pancreatic Cancer

My wife's ca19-9 dropped consistently throughout 9 folfironox treatments and further after sbrt prior to surgery. During surgery, the biopsies and margins were all negative. The surgeon said that the tumor was fully necrotic and no further chemo or radiation required. The first ca19-9 after surgery was under 30. In 3 ca19-9's in the 5 months since surgery it has risen a bit to almost 60. Her MRI's and CT scans have all been clear. The oncologist says that her liver numbers are still far out of whack from the chemo and that has an effect on the ca19-9 readings. Assuming the oncologist's assessment is accurate, liver function also impacts the ca19-9 reading.

Sun, Aug 2 11:12am · Pancreatic enzyme replacement in Pancreatic Cancer

My wife has been using RSO ever since she started chemo. Without it, she probably would have never eaten again. Using RSO is the only way she got off of Oxy. How does your husband take the RSO? My wife started by putting it onto a cookie or cracker but the smell and flavor were so off-putting that I have been making capsules. Unfortunately taking in a capsule makes the onset of the effect very delayed and hard to predict.

Sun, Aug 2 10:27am · Pancreatic enzyme replacement in Pancreatic Cancer

Its been three months since we started working with a cancer nutritionist (all telemedicine visits). She listens well and has been able to provide some needed emotional support as well as suggestions for how to add calories, protein and some variety to my wife's diet. We still get the occasional encouragement to add commercial supplements. My wife is very hesitant because most of them are heavy on chemical ingredients that she wouldn't have eaten even when she was healthy. Just this week we added homemade smoothies with organic vegan protein, fruit, milk and peanut butter. Taking it slow before trying to also add organic whey protein. She's very discouraged because the chronic diarrhea has kept her from gaining weight. The immodium has seemed to lose effectiveness and she was prescribed cholestyramine last month to help the diarrhea. It settles her stomach a bit but hasn't stopped the diarrhea.

Starting to think that her surgery was too drastic and this is her permanent situation. Has anyone ever gotten past the chronic diarrhea stage?

Sun, Aug 2 9:55am · Whipple procedure and follow up chemo in Pancreatic Cancer

My wife had surgery 2/20/20 which removed 60% of the pancreas, gaul bladder, spleen, 23 lymph nodes and arterial and duct re-routings. This was a modified Appleby, not the more familiar Whipple. The good news was that all the biopsies were negative and she was not required to get additional treatments. The bad news has been the recuperation. She wasn't overweight before the surgery and lost 23 pounds and hasn't had a day without diarrhea, gas and stomach pain since. She hasn't been able to put on any weight despite eating over 2500 calories/day. She has experimented with creon and zenpep with taking as little as 24,000 units with a meal and as much as 288,000 units (yes, that was doctor guidance). She takes the dose after and initial bite of food. Last month, the oncologist prescribed cholestyramine to sequester bile in the hopes of reducing the diarrhea frequency. The cholestyramine introduces a catch-22. It's prescribed to be taken with meals but is not supposed to be taken within 2 hours before or 4 hours after other medications. For a patient still taking 6 feedings per day with creon this would mean that there's no correct time to take the cholestyramine. Should she just take the cholestyramine with the meal as prescribed. The pharmacists and doctors haven't been able to provide definitive guidance. The cholestyramine initially increases the stomach pain but then it settles to a better than without cholestryamine pain level.

Has anyone figured this out?

Mon, Apr 27 9:43am · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

@colleenyoung my wife has gotten a lower dose Creon. 12k units instead of the 36k units. The capsules are smaller and she can swallow them. Previously was mixing the Creon with applesauce which was probably making the Creon ineffective since it's actually designed to slow release in the intestines not be immediately taken into the stomach. So far she can tolerate 1-2 12k capsules with each eating. The local gastroenterologist also prescribed a different enzyme, zenpep. Haven't filled the prescription yet since she's started using the Creon.

We also finally had a session with a dietician (why in the world it took the oncology staff 2 months to make the referral is a whole other story). The dietician was helpful with suggestions on supplementing to increase protein without using whey and pea powders which she also reacts to.

Mon, Apr 20 5:22am · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

Hi all, I guess I should post an intro since I jumped in with other posts already.

My wife was diagnosed with stage 3 pancan in July 2019 shortly after her 61st birthday. We met with our local gastroenterologist who connected us with the local pancan surgeon as well as the pancan specialists at Johns Hopkins. The local surgeon's diagnosis was marginally resectable tumor in the body with close proximity or involvement of celiac trunk. This was confirmed by JHH team. The course of treatment was laid out as 6-8 folfironox cycles, followed by a JHH clinical trial of keytruda and a pancan vaccine, then SBRT (radiation), then Appleby procedure followed by second cycle of clinical trial then completion of folfironox for a total of 12 cycles.

We opted to get the folfironox treatments locally in Orlando and the rest we would travel to Baltimore. Due to hurricanes and holidays disrupting the chemo schedule she wound up having 9 folfironox cycles before heading back to JHH. This turned into a blessing in disguise because the molecular study of the tumor showed that the folfironox was very effective in treating tumors with PALB2 mutation and that the clinical trial wouldn't be recommended. She was able to proceed to SBRT and surgery.

The Appleby was performed on February 20 at JHH. Surgery took 6.5 hours and they removed 60% of the pancreas, left adrenal gland, gaul bladder, spleen, 23 lymph nodes and resected the celiac trunk. The surgical pathology came back 100 % negative. She wouldn't need anymore chemo cycles.

So that was the good news. Initial outcome is that she is cancer free. The first quarterly scan is scheduled for June, were not sure where this will happen considering the covid19 travel restrictions.

I have written elsewhere about how poorly her surgical recuperation has progressed. She is plagued by chronic diarrhea and stomach pain resulting in weight loss and malnutrition.

Mon, Apr 20 4:44am · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

My wife had the gold fiducials procedure in preparation for the radiation, SBRT. She tolerated the fiducials procedure well. The gold markers were used in her case because they weren't doing general radiation. The SBRT is targeted and causes much less collateral damage. Not every treatment center has the SBRT capability. Good luck with the treatments.

Mon, Apr 20 4:36am · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

Yes, my wife was originally a candidate in the Johns Hopkins vaccine clinical trial but after researching further (and molecular analysis of her tumor), we opted out. She actually had the PALB2 mutation which allowed folfironox (5fu) to very effectively attack the tumor. Participation in the trial would not be necessary and wouldn't have furthered their vaccine research since they were targeting a different (more common) set of mutations.