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New DIPNECH diagnosis, need advice on doctors
Neuroendocrine Tumors (NETs) | Last Active: Nov 17 7:33am | Replies (39)Comment receiving replies
Hi! I was recently… finally diagnosed with DIPNECH. I am 69 and probably have had this condition for more than 20 years. Three years ago my cough became unrelenting . I have been to National Jewish Hospital for a week and have seen countless Dr’s who were of no help. I was finally diagnosed in Atlanta at Emory University Hospital. I travelled to see Dr. Ramirez at Vanderbilt. He has recommended lanreotide monthly injections. What side effects have you experienced on octreotide. Please advise as I have not yet decided what to do. My Emory pulmonologist says do nothing and monitor. My cough is SO debilitating that I’m not sure I can monitor and not take injections. I have 20 tumorlets on both lungs. Please advise on side effects. Thanks! Marcia
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I also responded to you on another thread about fatigue, hair thinning, blood sugar spikes and low heart rate/BP caused by Octreotide. Since I’m also on breast cancer meds that have some of the same side effects it’s hard to tell how much Octreotide is contributing. Not as bad as it sounds and well worth the trade off for stopping my chronic cough that was not only miserable but a social issue. I did remember one other thing. In the beginning it suppressed my appetite. I lost weight then gained the same amount back. My hair still covers my head. It’s just thin and no body now instead of thick with lots of body as it was before. Again, I take 3 different cancer meds that all cause hair thinning. Good luck with your decision.