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258 total results

Comments (244)

Hello @gprior, I understand your interest in reading about how others have treated DIPNECH. You mentioned...

https://connect.mayoclinic.org/comment/1223548/

reading about how others have treated DIPNECH

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28 6:25am

@annie12345 After you read thru all the posts, let me know what questions you still have....

https://connect.mayoclinic.org/comment/1329039/

respiratory symptoms I’ve had lung NETs and DIPNECH

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17 10:13am

It has probably been close to 10 years since DIPNECH was suspected in me. In the...

https://connect.mayoclinic.org/comment/881201/

probably been close to 10 years since DIPNECH

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Hi @marciamiller I also have DIPNECH ... on YouTube and like his interest in DIPNECH

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Mine was found incidentally on a coronary CT, then pet scan showed malignancy in RML, along...

https://connect.mayoclinic.org/comment/1205379/

typical “ carcinoid/NET, and that I had DIPNECH

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6 1:49pm

I am so glad the Octreotide had that unexpected and positive side effect! I had to...

https://connect.mayoclinic.org/comment/863539/

Now I want to look up the NETS and DIPNECH

Discussion: Smell of rubbing alcohol brings on symptoms

Support Group: Healthy Living

Posted: May 20, 2023

Hello @jan355 and welcome to Mayo Connect. I see that @californiazebra has already posted with you....

https://connect.mayoclinic.org/comment/1221355/

one who is familiar with treating DIPNECH

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25 11:34am

That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung...

https://connect.mayoclinic.org/comment/1330481/

future if it does get bigger.Im sure DIPNECH

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19 10:02am

@jhhaas I’m curious. You listed a lot of symptoms but said you haven’t needed treatment shots...

https://connect.mayoclinic.org/comment/1205397/

effects are so much better than my DIPNECH

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6 2:18pm

@rtyrrell So scary when anything is happening in your lungs and frustrating when answers are vague....

https://connect.mayoclinic.org/comment/1324516/

tell you I have had lung NETs and DIPNECH

Discussion: Need opinions on Spiculated nodule update?

Support Group: Lung Cancer

Posted: Jun 10 5:53pm

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

thought it was asthma, but it was DIPNECH ... Typical carcinoids and DIPNECH are not ... DIPNECH is so rare that may NETs specialists ... videos on youtube including ones on DIPNECH

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 1:23pm

@hopeful33250 Hi Teresa, You are correct that they did not suggest surgery for me. The reason...

https://connect.mayoclinic.org/comment/861413/

It's the DIPNECH that causes me ... So without DIPNECH, lung NETs (typical

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

lung NETS - typical carcinoid and DIPNECH ... Advanced DIPNECH which is really rare