← Return to NET symptoms despite follow-up lab work ok

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@tomrennie

Dr. Sonbol and his team saved my life. So, I am biased. By the time that I finally got to him, I was in pretty bad shape. Looking back, I didn't really realize it. I was on CAPTEM for 12 months and now just the Cap part for three months. I have put on 50 pounds after losing 120. My primary in my pancreas was 8x6cm. It is now 3x2cm. My liver lesions, too many to count, are practically gone. I am in maintenance mode now. I live an hour away from Mayo Phoenix. I usually drive there in the morning for my bloodwork and scans, then drive home. My wife and I will have a video meeting with Dr. Sonbol, or a member of his team, later that afternoon to review the results and plan our next treatment steps. It took a little while to work out the logistics, but this is now working for all of us. Here is the best part of Dr. Sonbol and his team: We trust them. They are great people that happen to be amazing medical professionals. They are NET experts, so we don't have to be. I can just be a patient. I do what they tell me to do. I can find examples on line to contradict everything that my care team tells me. I make it a choice not to. I am not a doctor nor a medical professional. They are. I can just be a patient.

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Replies to "Dr. Sonbol and his team saved my life. So, I am biased. By the time that..."

My husband also sees Dr. Sonbal and we couldn't agree more! He was also on CapTem for 14 months with very good results and was just taken off the temodar; now just on maintenance with the cap. I'm curious - have you had a scan yet after being on just capecitabine? We were wondering how well that works on its own. I'm so glad you've done well!