Welcome to the NETs Group! Come say hi.

Hello @lagunagrl
If you want to see the most recent posts, here is how to do it. If you look underneath the first post (in any discussion) you will see an icon that says,"Oldest to Newest," If you click on the drop-down arrow you can change it to "Newest to Oldest" That way you will have the most current posts.

Also, if there is someone you want to respond to you need to click on "Reply" and then post or use their user name (as I did in this post where I typed @lagunagrl). Always using the "@" before the name.

I hope this helps.

This post is from 2017. Anything more recent from you? Thanks.

Upcoming virtual support group for all NET patients:
Support Group Meeting
Thursday, February 6, 2025, from 5:30 pm-7:00 pm EST
With Guest Speaker:

Dr. Heidi Connolly, Mayo Clinic Cardiologist
Presenting on Carcinoid Heart Disease
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-7266
Loriell Grossling, LCSW, OSW-C, MSW
Oncology Social Work, Section of Social Work
Phone: 904-953-7266; Fax: 507-422-0920
Email: Grossling.loriell@mayo.edu

@rachismarie
Sorry to hear about all you’re going thru. I understand how scary it can all be. What type of lung cancer do you have? DIPNECH can lead to lung NETs (neuroendocrine cancer) so is that what you have? I have lung NETs (typical carcinoids), breast cancer and DIPNECH. My DIPNECH is treated with monthly octreotide injections for 3.5 years now. Octreotide eliminated my 30 year long chronic cough, constant mucous and helped shortness of breath when walking. Felt like a miracle! It also can slow tumor growth. Mine were already growing do slowly it’s hard to tell about that. My story is all over the DIPNECH threads. Once you read through them, let me know if you have any specific questions for me. Prayers for you.

@sophiarose
I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it lowered my BP and heart rate. I had to reduce my atenolol (per my cardiologist) to almost nothing because my heart rate was in the 40s — scary since it had always been high. BP was too low so I felt faint when standing up. I’d go off atenolol altogether but it helps the muscle cramps and fasciculations from my rare neuropathy. My cardiologist told me he wants my BP at a minimum of 100/60 or my brain and organs are not getting sufficient oxygen. I’m not suggesting you change anything without doctor approval. Just sharing my experience. Octreotide has really controlled my respiratory symptoms so I stay on it. I hope things improve for you.

Thank you for responding
I have tried switching times
Right now till I can get an answer I am only taking the Nebivolol when my pressure goes up lay down till it goes down because if I take it daily my pressures goes down to 90/50 and I won’t take it
Yes I will post when I get an answer
Again
Thank you

Hello @rachismarie,

I'm glad that you found Mayo Connect. We have a number of members who have dealt with DIPNECH and tumorlets. When you have a rare disorder, it is good to connect with others who have had a similar experience.
Here are links to those discussions:

--Dipnech on lungs - does anyone have
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
--Carcinoid tumorlets neuroendocrine tumor cell hyperplasia dipnech
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
In these discussions you will meet members like @californiazebra @hollywood817 and others who will be able to share their experiences with you.

As this is your first post, please share what symptoms led to this diagnosis. Were you having a chronic cough or shortness of breath?

Hi @sophiarose

I'm sorry to hear about your blood pressure/heart rate problems after the injection. It makes it more difficult when the specialists don't agree on the cause.

Have you considered changing the time of day when you take the Nebivolol? I see that this is classified as a beta blocker. You might talk with your cardiologist and ask if you can take it at night and see if that reduces the symptoms during the day when you are up and about.

Will you post again and let me know how you are doing?

Sophiarose Hope your thanksgiving was good. I’ve been on Ocreotide for 18 months, it does control my carcinoid syndrome. I haven’t experienced what you described. I have a respiratory reaction when I receive the shots. Were you on Ocreotide prior to the PRRT Treatments, or has this started since the treatments.. I have my first PRRT treatment Thursday, with my ocreotide shots to follow, I’ll let you know if I experience the same.. It is a crazy journey…

Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving