Creon - am I taking too much or too little?

Hi, @stillaround. I love your name!!

The Creon medication website says this….

Talk about symptoms with your doctor
During your first few weeks taking CREON, keep track of any symptoms you’re experiencing with the Treatment Tracker, and share this information with your doctor at your next in-person or telehealth appointment. Be sure to also let your doctor know about any changes to your diet or weight. These details will help your doctor determine if your dose needs to be adjusted.
-Treatment Tracker form: https://www.creoninfo.com/content/dam/creon/pdf/creon-treatment-tracker.pdf

I add my welcome, @stillaround. I agree with @jlharsh to mention the side effect on constipation to your doctor or symptom management nurse.

I've moved your question to the Pancreatic Cancer support group and am tagging fellow members like @howleegirl @matt2024 @jeeplewis @scooter369 @sonomaga @suze22 who can share their experiences and tips on pancreatic enzymes and Creon with you.

My understanding is that if you have PC your pancreas may not be putting out enough enzymes to properly digest food. My wife has the same situation and she is beginning to take Creon. We have been assured that there is no harm in doing so and possibly some upside. The constipation / diarrhea cycle seems to come with Chemo and the additional meds and takes some trial and error to find what works for each person. Keep me posted as to how you do. IMO, the less laxatives the better.

This topic is so confusing, I would like to know the correct amount of the enzymes to take also. They upped my dosage as I was not gaining weight, but I think I’m now maintaining so that’s better than continuing losing - starts to feel like I am just going to fade away when it’s a lower # every time I am weighed (I am 5’ 7” and I weight 109 or so now). But when they upped my dosage (I was taking ZenPep, 20,000 IUs at meals, 10,000 for snacks) they okayed me to order a different, OTC med - Vital Nutrients, so take one of these at my three main meals along with the ZenPep. Much cheaper, $40/month. Now I am wondering what is the difference? - if much - between the ZenPep and cheaper OTC med? I wouldn't have known about the OTC cheaper med if the Dr hadn't recommended it, so they must have some faith in it. Hard to find answers for these medications. And is there much difference between Creon and ZenPep? I think Creon may be more expensive than ZenPep, I pay $194/month from the hospital mail order pharmacy - I’ve seen much higher $$ for both, the mail order option helps us (initially was paying $394/month).

@katieliz There is an on-line PERT dosing calculator that will easily calculate the amount of pancrealipase required based on the amount of fats, carbohydrates and protein being consumed for a specific meal. Go to pertcalculator.org to set up a free account and use the calculator. Often times, what is written on the Rx bottle is insufficient for a given meal.

Thanks for the welcome and information. A week later and lowering the amount of Creon seems to be helping. Radiation-induced gastric injury or fibrosis may be causing accompanying stomach pain. Recovery is definitely a full time job.

@stillaround
I appreciate you sharing your experience with pancreatic surgery. You say, "Recovery is definitely a full-time job." Are you referring to a change in your eating habits?

On Connect, we have a discussion group for members who have had digestive tract surgery. Here is the link,
--How Do I Eat After Digestive Tract Surgery
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I'm sure you can add to this discussion based on your own experience. What symptoms are most problematic for you now?

@hopeful33250 Thanks, I will look there. Was referring to recovery from high dose radiation which I had last spring. Even though I am currently in remission with low CA19 I've been having some stomach pain.

@stillaround
Do your doctors think that the stomach pain is related to the radiation treatment?

@stillaround I had 15 sessions of IMRT in Aug. Intensity modulated radiation therapy. I was warned beforehand by the rad. oncologist that I may experience some stomach discomfort. I did and it was considerable. He told me after the pain started at approx. 8 sessions, that the reason the pain was occurring was that the rad. beam had to be brought very close to my stomach in order to hit the pancreatic tumor. There were 2: pancreas and liver. Now, in Oct., the stomach pain has faded considerably and he called it "inflammation". I won't have the results of the PET scan and MRI until late next week and am hoping/praying for the best. Have patience @stillaround. I think your stomach pain will dissipate over time.