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146 total results

Comments (141)

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

I have both DIPNECH and typical lung ... The BC and DIPNECH meds do cause some ... lumpectomy revealed both breast cancer and DIPNECH ... mir123 also has breast NET but not DIPNECH ... They do consider my DIPNECH to be advanced

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi @sadair20 -- I can see why you are frustrated and worn out. I coughed constantly...

https://connect.mayoclinic.org/comment/840172/

lung biopsy and was diagnosed with DIPNECH ... People with DIPNECH usually have a long

Discussion: Constant Coughing

Support Group: MAC & Bronchiectasis

Posted: Apr 9, 2023

Hello Teresa, If I had a minimal uptake 2.1 SUV 1cm tumor (multiple other had no...

https://connect.mayoclinic.org/comment/1024566/

The doctors say I have Dipnech and DPM

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28 7:12pm

@netnan I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both...

https://connect.mayoclinic.org/comment/1107096/

lung NETs (atypical carcinoids) and DIPNECH

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17 10:46am

Wow hats off to you on your journey what an experience you learned from and handled...

https://connect.mayoclinic.org/comment/821372/

Also have Dipnech which are multiple

Discussion: NETs: Competing Pathologies--how to sort it all out?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

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 @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

still considered stage 1 although my DIPNECH ... have multiple nodules/tumors then DIPNECH ... I have both DIPNECH and lung NETs (typical

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28 2:27pm

Hello @marciamiller and welcome to Mayo Connect. I am glad that you found this forum. DIPNECH...

https://connect.mayoclinic.org/comment/1163824/

DIPNECH is a rare form of cancer and

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28 6:31am

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

@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

Hi Jake! Sure I'll explain. California because that's where I live. Zebra is because people with...

https://connect.mayoclinic.org/comment/837201/

DIPNECH (only a couple hundred documented

Discussion: Let’s Go Walking! Join me for a virtual walking support group

Support Group: Just Want to Talk

Posted: Apr 3, 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

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Hi @phylrose1taubezin I have primary neuroendocrine lung cancer and unrelated stage 4 breast cancer. It's sooo...

https://connect.mayoclinic.org/comment/875145/

cancers) in the setting of advanced DIPNECH ... None of them had heard of DIPNECH. ... The bottom line is stage 1 lung NETS/DIPNECH

Discussion: Did anyone ever get a surprise primary lung cancer finding?

Support Group: Breast Cancer

Posted: Jun 8, 2023

@ginny100 Regarding a lung biopsy: Did they tell you how your biopsy would be performed? With...

https://connect.mayoclinic.org/comment/1122951/

have an even rarer condition called DIPNECH ... The DIPNECH is why 20 doctors over 12 ... I have advanced DIPNECH, but after all

Discussion: Starting on targeted breast cancer meds.

Support Group: Breast Cancer

Posted: Aug 13 1:30pm

Hi - I’m new here. But I saw your question. I was diagnosed this summer with...

https://connect.mayoclinic.org/comment/974003/

typical carcinoid, and that I have DIPNECH

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2023

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1...

https://connect.mayoclinic.org/comment/1143500/

I has dx’d with DIPNECH last fall after

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18 11:34am

Hi @peggymariejackson as I mentioned in another one of your posts, I have lung NETs --...

https://connect.mayoclinic.org/comment/861009/

lung NETs -- typical carcinoids plus DIPNECH

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Sorry your going through this. Thanks for your response. If you do not mind, I would...

https://connect.mayoclinic.org/comment/1055029/

They said it would not cause DIPNECH

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22 4:43am

@woundedwarrior1969 Your philosophy certainly may be true for some disorders. In the case of DIPNECH the...

https://connect.mayoclinic.org/comment/965985/

In the case of DIPNECH the symptoms

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

I’m cautious about taking any herbs without consulting with doctors. Having said that, congrats to those...

https://connect.mayoclinic.org/comment/1007180/

I have DIPNECH and bronchiectasis.

Discussion: Bronchiectasis and diet

Support Group: MAC & Bronchiectasis

Posted: Jan 31 10:23am