1. < Pancreatic Cancer

Still losing weight: Does timing of Creon help?

Posted by howleegirl @howleegirl, May 15, 2023

Husband is still losing weght....too much!!!! We got his Creon dialed in correctly....wondering if he took the Creon after he ate if this would help him gain weight. I think I read on here that it helped someone to do this?

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pendesk8 | @pendesk8 | May 17, 2023
In reply to @markymarkfl "@howleegirl , 5 creons might be a bit much, especially depending on the size (content) of..." + (show)
@markymarkfl

@howleegirl , 5 creons might be a bit much, especially depending on the size (content) of the capsule. I started off with the 24000-unit capsules, but upped that to the larger 36000-unit ones. So 3 of those is a lot, unless it's a really big meal. Unfortunately for me, I live on a mostly meat diet, which means I really have to manage digesting fat carefully. I had to give up the heavy cream in my daily coffee, which has made things easier for me. Very fortunately, I haven't had any serious issues with weight management. For perspective, with heavy whipping cream in my coffee, I was getting about 400 calories from each cup, and drinking 2 or 3 per day.

@pendesk8 , I've talked to 3 centers of excellence plus one hometown oncologist, and none of them could recommend a study for me outside their own center/institution. https://pancan.org/ and another site linked here recently (can't find it now) can be very helpful in doing a nationwide search tailored to your specific cancer, stage, mutations, location, etc.

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national cancer institute in Bethesda,md has been the most helpful.They are getting ready to start a trial specific to the ATM gene mutation which i have,So trying to get in this trial. They have 2 other trials they are running also if your close.I'm only 80 miles away so not too bad.

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markymarkfl | @markymarkfl | May 17, 2023

@pendesk8 , Can you provide any more info/links about those 3 trials in Bethesda? I am also ATM-positive, and have a relative I could stay with not too far from there. MD Anderson also has several trials targeting ATM and related mutations.

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2 replies
pendesk8 | @pendesk8 | May 17, 2023
In reply to @markymarkfl "@pendesk8 , Can you provide any more info/links about those 3 trials in Bethesda? I am..." + (show)
@markymarkfl

@pendesk8 , Can you provide any more info/links about those 3 trials in Bethesda? I am also ATM-positive, and have a relative I could stay with not too far from there. MD Anderson also has several trials targeting ATM and related mutations.

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christine muir is the one I was working with.Sloan is also running the atm trials but that is 4 hrs from here.christine.muir@nih.gov

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gardenlady1116 | @gardenlady1116 | May 17, 2023
In reply to @howleegirl "After reading on here what people are taking it does sound low....My worry is he is..." + (show)
@howleegirl

After reading on here what people are taking it does sound low....My worry is he is still losing weight!?!?!?!!? He was doing great for awhile then he lost 10lbs in a a-week! He is eating well. Had at PET scan done and it was clear. They said he is a "mystery" to them. I think they need to try to solve this mystery!!!!!! Could he be losing the weight because he's not getting enough enzymes??????

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Yes. It took some help from the surgeon and the hepatobiliary dietician I see at MSKCC get me on the right track. I went from the initial of 24,000 which helped with symptoms but wasn't enough to stabilize weight. Currently taking 36,000 + 24,000 with each meal. The dosing is 500 to 2000 units per kilo body weight (2.2 kilos to lb body weight conversion. I have been able to stabilize my weight anyway.

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lvtexas | @lvtexas | May 17, 2023

Check his blood sugars, do you know - what are they fasting?

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pendesk8 | @pendesk8 | May 18, 2023
In reply to @markymarkfl "@pendesk8 , Can you provide any more info/links about those 3 trials in Bethesda? I am..." + (show)
@markymarkfl

@pendesk8 , Can you provide any more info/links about those 3 trials in Bethesda? I am also ATM-positive, and have a relative I could stay with not too far from there. MD Anderson also has several trials targeting ATM and related mutations.

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Bethesda contacted me for a screening appointment in June.Good luck to you too.

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pendesk8 | @pendesk8 | May 18, 2023
In reply to @howleegirl "We know the feeling......and it's just not right!!!!" + (show)
@howleegirl

We know the feeling......and it's just not right!!!!

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I got an email today for a screening app at bethesda nat.cancer inst.in june.Say a prayer for me.

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bethf | @bethf | May 18, 2023
In reply to @pendesk8 "I've had the same problem with my oncologist.I've been looking for a clinical trial for almost..." + (show)
@pendesk8

I've had the same problem with my oncologist.I've been looking for a clinical trial for almost a year now.Every place asks me if my oncologist is helping me,the answer is NO,I'm going at it alone.I've lost weight and she has given me NOTHING for it.I feel like she doesn't really care.

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check with cancercommons.org or PCAN for clinical trial information. Stageivsurvivor put these ideas in another thread. Best wishes, Beth

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