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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.

Mon, Apr 20 4:08am · Pancreatic Cancer Group: Introduce yourself and connect with others in Pancreatic Cancer

Hello @treadmillann My wife has also had terrible reaction to the Creon, severe stomach pain and diarrhea. To make matters worse, the recommendation from the surgical staff was always the same, increase the Creon dosage. She lost over 20% of her body weight before we just decided to stop the Creon. She has improved marginally by using Imodium with the docs approval but still has intermittent diarrhea. At least the weight loss seems to have bottomed out for now. OTC papaya enzymes is the first possible alternative I've heard and will try them. How did you learn about digestive enzymes building food? I need to do more research.

How are you doing now? What is working for you?

PS my wife thinks that she can't take the Creon because it is a porcine derivative and she might be allergic since she's never eaten pork products.

Mon, Apr 20 3:54am · Pancreatic enzyme replacement in Pancreatic Cancer

@fassbinder EXACTLY! We still have been trying to get to a pancreatic or at least a digestive cancer specialist dietician because the advice we receive even from the pancan surgical team is the generic, "use the Creon, take ensure, take protein supplements …" But what are you supposed to be doing when those things cause the vomiting and severe diarrhea?

In my wife's case, the chemo caused temporary changes in tastes that made food taste vile but it lasted only a few days. Something about the surgery, whether the loss of multiple organs or the side effects of the anesthesia, epidural and pain meds, made food so vile that she immediately spit it out or gagged it up. That lasted over a month. No one has acknowledged what else to do. Now 2 months later these reactions have subsided for well-prepared foods but continue for anything like ensure or other supplements. We're really seeking a detailed dietary meal plan that I can prepare for her that provides enough nutrition and variety.

Sun, Apr 19 7:56pm · Pancreatic enzyme replacement in Pancreatic Cancer

@colleenyoung My wife has a combination of forcing herself to eat because she has to and some minimal appetite because she's using medical marijuana. She also takes megace and marinol (laboratory thc) which seems to provide no benefit at all. She's eating 6 meals and snacks per day now with calories estimated to be 1000-1500 but the first month she probably didn't even get 500-1000 per day. I have no question that she has severe malnutrition. A week of eating well with intermittent diarrhea she might gain a pound or two but a day of diarrhea can set her back 2-3.

Sun, Apr 19 7:42pm · Pancreatic enzyme replacement in Pancreatic Cancer

I wish your husband a good recuperation. If your situation is similar to ours, seek nutritional guidance outside of the oncology or hospital. We hired our own dietician because we've been waiting 2 months for the hospital's oncology nutritionist. I had no idea that the Creon was so expensive. Ever since her diagnosis we've met the out of pocket maximums both years.