Neuroendocrine Tumors (NETs) Support Group

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Comments (736)

Take the shots first. PRRT is in the options. Don’t go there first

https://connect.mayoclinic.org/comment/1396269/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2025

Is it inherited like MEN-1, are you candidate for PRRT treatment.

https://connect.mayoclinic.org/comment/102024/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2016

@markmark007 As your wife has completed the PRRT treatment, do you mind to let us know...

https://connect.mayoclinic.org/comment/968308/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

Endocrine tumors are difficult to diagnosed and in our opinion, difficult to treat. My husband was...

https://connect.mayoclinic.org/comment/1498542/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:36am

My wife just finished 4 PRRT treatments and are awaiting our PET scan on June 7th,...

https://connect.mayoclinic.org/comment/1048867/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2024

I'm right there with you. Third PRRT coming up in July. I do have slight cramping...

https://connect.mayoclinic.org/comment/1588058/

Discussion: Has anyone had cramping pain in left side nearing 3rd PRRT treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1 6:40am

I am waiting for PRRT to be offered in my city, fingers crossed!

https://connect.mayoclinic.org/comment/1249841/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

I received PRRT at UAB with success. The treatment works on active sites. I have inactive...

https://connect.mayoclinic.org/comment/1531566/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20 3:06pm

@colleenyoung Thanks very much. My son's PRRT treatment will start late next month, meanwhile they put...

https://connect.mayoclinic.org/comment/867854/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Alpha PRRT had a clinical trial underway - what can the participants share with us (side...

https://connect.mayoclinic.org/comment/1312868/

Discussion: Has anyone taken part in clinical trail with PRRT alpha emitter?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

A quick update for my wife is doing ok, 90 day checkup after surgery showed no...

https://connect.mayoclinic.org/comment/907311/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

At a recent meeting with those in charge of PRRT at Mayo, they have 4 rooms...

https://connect.mayoclinic.org/comment/182417/

Discussion: PRRT has been approved by the FDA Jan 26, 2018, as expected

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8, 2018

Hello @ericmitre1963, and welcome to the NETs support group on Mayo Clinic Connect. I see that...

https://connect.mayoclinic.org/comment/1534883/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25 7:57am

Hi I did 4 PRRT treatments with octreotide Did a PET scan and a MRI It...

https://connect.mayoclinic.org/comment/1303390/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2025

Hi Mark, hope PRRT worked well for your wife My son had an unsuccessful Whipple operation...

https://connect.mayoclinic.org/comment/1046188/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2024

Teresa: Yes to both parts of your question - we are very blessed to be able...

https://connect.mayoclinic.org/comment/966598/

Discussion: Questions about Blood Tests Results after PRRT treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2023

@frankwc I have to comment on the Geiger counter! I had purchased one also, and about...

https://connect.mayoclinic.org/comment/1588455/

Discussion: PRRT Treatment: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1 1:37pm

There's a good chance of you having both treatments when all is said and done. For...

https://connect.mayoclinic.org/comment/1380088/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2025

@lindabees Thanks so much for the reply and useful information. I had PRRT done two years...

https://connect.mayoclinic.org/comment/1423468/

Discussion: What are other chemo options if CAPTEM becomes resistant?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2025

Thank you so much for sharing the decision you made for PRRT. It is very helpful...

https://connect.mayoclinic.org/comment/1366032/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2025

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