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Late detection

almostaranch123 profile image
7 Replies

Hi there my friends,

2 years ago I was feeling gird pain and I’ve been on Pepcid, and omeprozole for 20 years off and on.

So 2 years ago my bloodwork came back with very high B-12, 1500. Dr said that she was concerned but didn’t really go into advanced research. I researched it and found that several opinions were that there were organ issues that could have been looked into. That’s when I felt that an ultrasound should have been performed and if the B-12 count remained high then a CT scan should have followed. To find out I have a very large tumor on the pancreas and 6 large tumors on my liver, stage four, What happened to early detection???

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ICE187 profile image
ICE187

Look into Autoimmune Pancreatitis. IgG4 blood test. This mimicks cancer. If you have any other Autoimmune diseases, definitely think of Autoimmune Pancreatitis. It often gets misdiagnosed as Pancreatic Cancer. On scans, it appears as masses. The pancreas will often have a sausage like appearance with AIP. My doctors thought I had cancer. Masses on my liver, pancreas and lungs. Severe weight loss, elevated wbc. It took a knowledgeable Rheumatologist with AIP experience to figure it out. I was being prepared for the whipple. I told the Rheumatologist that I took some prednisone that I got from a friend and my symptoms went away. AIP responds to steroids. This helped in my diagnosis. Taking prednisone is dangerous. I am hypothyroid with sjogrens, vitiligo and AIP type 1.

Jackie1947 profile image
Jackie1947 in reply to ICE187

As I have Rhuemtoid Arthritis and recently been diagnosed with Pancreas problems I had a IgG4 test which came back negative.

ICE187 profile image
ICE187 in reply to Jackie1947

Negative can also be Autoimmune Pancreatitis. I was told before my bloods came back to not freak out if my IgG4 was negative. They would then run an Rheumatoid Factor test. Pancreatic cancer will have elevated IgG4 levels, but below the range for AIP. I had the hallmarks for cancer and was scared to death. I'd be curious what the imaging of your pancreas looks like by a ct scan. Definitely get a 2nd and 3rd opinion and ask if they have experience in autoimmune pancreatitis. Was a biopsy done on your pancreas? Something else that made a major difference was diet. I gave up gluten, sugar, dairy and now added the low FODMAP diet. I think the low FODMAP helped more aggressively. I was put on 60mg of prednisone for a month and had another ct scan. My masses shrunk big time. I was then put on lower doses for several more months. I had a flare recently that made all of my symptoms come back. This is when I got on the low FODMAP diet and the symptoms went away. If I have any gluten, fats, sugars or dairy, I have flares. I take a product called Pancreatin 8x before every meal or snack. It helps as well. Once we have 1 autoimmune disease, our lives change. Most foods are inflammatory. We seem to be prone to getting more autoimmune diseases.

Jackie1947 profile image
Jackie1947 in reply to ICE187

Well that has cheered me up 😀 I already have Rhuemtoid arthritis. I've not had an appointment to see a Gastroenterologist. Creon was prescribed for chronic pancreas enzyme deficiency diagnosed by a stool test. I'm allergic to pork so off that b Could be the biological drug I inject weekly for RA who knows. I'm waiting also to see a dietician. I've put myself on a low fat diet and no alcohol but I rarely had a drink anyway .

ICE187 profile image
ICE187 in reply to Jackie1947

Pork is bad for pancreatic problems. I was a total fast food cheesy eaten, greasy oozing lover. I had to give it all up. It sucks, but so does weeks of serious pain lol. I enjoy the weight loss. I needed it.

Jackie1947 profile image
Jackie1947 in reply to ICE187

The prescription enzymes contain pork! I don't eat fast food which is good

ICE187 profile image
ICE187 in reply to Jackie1947

Look into Pancreatin 8x or Pancreatin 2000. Both can be found on Amazon and Ebay. I eat baked fish in olive oil and seasoned with oregano. Baked chicken with the same oil and seasoning. Pinto beans, lima beans, low fat beef, yellow rice and salads. That is pretty much all I eat now. No processed foods.

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