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@caringwife

my husband is the person who is having trouble getting answers. He was diagnosed with MALT Lymphoma in 2018, in the duodenum. After 2 rounds of Chemotherapy (Rituxin alone, then with 2nd round (when it returned in the ileum) Rituxin and Bendamustine. His PET scans have been clear, last one was 12/2021) He has had gallbladder removed and was feeling pretty good for a while. Then the pains returned! He has had numerous sinus infections, an endoscopic sinus surgery and ear surgery! He has had CTs of chest abd and pelvis, plain abdominal films, CT enterography twice. His WBCs are high, his RBCs are low, his iron is low, he is tired all the time. He rarely feels like eating. CTs progress from5/2021 diverticula, 6/2021 mild inflammation of mesentery mild adenopathy LUQ no nodes. to 9/2021 mid abd misty mesentery numerous Lymph nodes to 10/2021 to wall thickening jejunum and inflammatory changes, prominent bowel loops, prominent retroperitoneal lymph nodes, prominent bowel loops, misty mesentery. He received antibiotics in Sept. they gave him antibiotics which did help. In Oct. he got prednisone 20mg one for 3 days. This helps to cut the abdominal pain and sleepless nights, but comes back every 2 to 3 weeks. He has had to call for refills, which they arent happy about giving him. AND they say there is nothing they can find is wrong. Something is wrong. Was this caused by the lymphoma? Was this caused by Chemo? We were told in communication from MAYO that he is not a candidate to be seen there. WHAT and HOW do we proceed? I feel sorry for him and we dont know what to do and which practice locally to request referral to............

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Replies to "my husband is the person who is having trouble getting answers. He was diagnosed with MALT..."

Oh my goodness, @caringwife, your concern is tangible. You're clearly worried and at your wit's end.
While Mayo Clinic is a remarkable place, it is not the only place. Did you apply for an appointment at Mayo Clinic in Florida? Has your husband been seen at a large medical facility? May I ask what state you're in?