← Return to Anyone living long-term with DIPNECH on lungs?
DiscussionAnyone living long-term with DIPNECH on lungs?
Neuroendocrine Tumors (NETs) | Last Active: May 13 7:20pm | Replies (77)Comment receiving replies
Replies to "@californiazebra do you have any side effects from the Octreotide? I knew it helps the cough,..."
Connect

@jhhaas
Yes, it has side effects. I believe my throat clearing was because every time I coughed which was all day long, clear mucus (no infection) would be generated so I went through 100 tissues a day spitting out mucus. For me the side effects are worth it because the cough and mucus were life ruining for decades and a real social/work issue. The octreotide stopped both of those and improved my shortness of breath.
For you, it may not be worth it. It causes blood sugar spikes when I eat so I really have to watch my diet and should be on meds for diabetes, but those trigger my rare neuropathy. I already had fatigue, some hair thinning, low blood pressure from two breast cancer meds I had started two months earlier, but feel octreotide added to those issues. It can cause a slow heart rate which is does for me. Everyone's body reacts differently.
I'll never stop taking Octreotide so long as it keeps my cough away. It also slows down lung nodule growth even though they are already slow growing. There has been no significant growth in my 50+ nodules in the 5 years I've been on Octreotide. All I can say it that if you don't like the side effects, you can just stop taking the injections. My endocrinologist told me when another patient he had stopped the injections, his blood sugar went right back to normal. I say no to meds all the time because I can't stand side effects, but in this case it's worth it.
GOOD side effects for me: I was very chemically sensitive to fragrances, cleaning products, etc. and highly allergic to all animals all triggering more coughing and breathing issues. Octreotide reduced my chemical sensitivity (social issue) by 80-90% so I'm no longer allergic to people and their fragrant homes. My friends and family all commented on the change. I can also now pet animals that I love for the first time in my adult life. I'm 67. That has been amazing!!!