Still losing weight: Does timing of Creon help?

Hi I’m new to this group and to Creon. My husband has been losing weight for a long time. He had to have surgery for a collapsed lung. The dr wanted his history so I told them that his pancreas was in atrophy and keeps losing weight. They put him on the Creon I was hoping for instant weight gain. Took him to the surgeon for a follow up and he had lost 3 more pounds. He now weighs 130 pounds. He was 220 pounds and 6’2. This is scaring me so much. His appetite is not the greatest. Some doctors say protein shakes. I think he needs fat. Any advice is welcome… My husband has been through a lot. Open heart surgery 11 years ago . With his collapsed lung he had to have 4 surgeries and hospitalized for over two months. The instructions on his Creon 24,000 , ate take one capsule three times daily with meals and one tablet three times a day with snacks. He is a slow eater. God bless you all and thank you in advance for any knowledge or advice you can send me. He is also a diabetic type two and he takes Levothyroxine for his thyroid that spiked just once. I read that Levothyroxine can cause weight loss. So sorry I’ll stop now. Just desperate!!!

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.

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

@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.

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??????

@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.

@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.