Learn About NETs and monthly meetings

My duodenum surgery was major in 2008. I am scheduled for an advanced EDG. The plans are to take a piece for pathology. It cannot safely be removed without perforating. I am hoping the drug I am starting will stop the tumor from spreading or multiplying.

How are you doing?

I'm doing OK, now. I have had an EGD every two years. In the in-between years, I have some blood work to test for serotonin levels and a check of the Chromogranin levels.

As I also have cysts in the pancreas, I also have an MRI every two years. In the in-between years, I have blood work to check on the pancreas levels as well as liver numbers.

The cysts on the pancreas have remained the same over the years, so I shouldn't worry, but sometimes I do.

The only treatment I've had is the surgeries. I haven't required any other treatment.

As a result of the surgeries, I do have digestive problems. I take Prilosec daily and still have to watch my diet to avoid reflux. Do you have other digestive problems as a result of your surgeries?

Learning more about NETs.

There will be another Lunch with the Experts this Thursday, January 13, at noon. This will be a Facebook Live meeting (can also be accessed by Youtube). The speaker will be, Mary A. Maluccio, MD, MPH, FACS! Dr. Maluccio is a surgical oncologist, professor of surgery, and the medical director of the New Orleans Louisiana Neuroendocrine Tumor Specialists (NOLANETS) program, a strategic partnership between Louisiana State University and Ochsner Medical Center - Kenner. She runs a research lab that's focused on primary and secondary cancers of the liver. This includes a continuum of efforts of basic science projects evaluating the mechanism of inflammatory induced cancers, translational research projects investigating biomarkers of cancer in unique patient groups, bloodwork markers of response to surgical and nonsurgical cancer treatment as well as outcomes projects evaluating value-based treatment paradigms for cancer, which includes decision analysis modeling and cost analysis.

If you would like to register, here is the link,
https://www.facebook.com/Carcinoid/photos/a.434139689226/10158966942774227/

Hi I don't have facebook. How do I access via you tube? Is there a code or special link?
Lenora

Hello to all of our NETs members,

On Thursday, January 27, at noon (EST) there will be a presentation on NETs sponsored by the Carcinoid Cancer Foundation (CCF) It is a FaceBook Live presentation (also be available on Youtube).

The presenter will be "Satya (Nanu) Das, MD, MSCI, is a medical oncologist and hematologist at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. He is the lead of the NET program at VICC and is the medical oncology lead for the peptide receptor radionuclide therapy program. His research interests center on gastrointestinal cancer, with a focus on NETs and drug development. He is the principal investigator of several clinical trials in NETs.
Among Dr. Das’s research projects is designing studies for patients with NETs and NECs, utilizing the impairment of DNA damage repair to create new treatment strategies for gastrointestinal cancers, and assessing when to optimally sequence PRRT. Clinically, Dr. Das takes care of patients with advanced GI malignancies with a specific interest in those with neuroendocrine tumors and colorectal, pancreatic, and gastric adenocarcinoma. NET patients make up more than 60% of Dr. Das’s practice."
Dr. Das is a co-author on a just-published article in JAMA Open Network, “External Validation of a Clinical Score for Patients with Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy.” This article reports on a Clinical Score (CS), which is the initial prognostic score to help NET patients with well-differentiated neuroendocrine tumors to estimate the benefit from peptide receptor radionuclide therapy, PRRT.
I hope that many of you can view this presentation, especially some of our newer members of the NETs group including, @microbe1943, @dbmenger @tracyfurtiscaudle, @phoebeghostwriter, @cvb, @mfgw, @lenorahaston, @mwalum, @felo, @captain1950, @jhilbish, @rodelba, @netpatient, @tatteesmom3, @kate12345.

This presentation can be accessed as follows:

CCF’s Facebook Page, https://www.facebook.com/Carcinoid/. Just come to the page at noon and the program will begin. There is no need to register nor is there a special link.

For anyone not on Facebook, each of the presentations in the series is available on CCF’s YouTube channel, https://www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.

Here is another learning opportunity for NETs patients. This one is hosted by LACNETs Team. This webinar will be live on Friday, January 28, at 8 a.m. Pacific Time. The topic will be the latest treatment options for NETs. Here is the information:

"NET expert Dr. Pamela Kunz of Yale School of Medicine will be joining us this Friday, January 28 for an update on neuroendocrine cancer. The live webinar and Q&A begins at 8 am PACIFIC TIME,
Register here: bit.ly/LACNETS_Jan2022

What are the latest treatment options for NETs? What's on the horizon for upcoming treatments? Dr. Kunnz will address these important topics and updates.

To submit other non-case specific questions for the live Q&A, go to http://www.slido.com/LACNETS1.

The webinar will be streamed on the LACNETS website, Facebook and YouTube."

-The LACNETS Team

Hello All:

I'm really excited for you all to attend the Carcinoid Cancer Foundation's Meet the Expert on Thursday, Feb. 17, from noon to 1 p.m. EST. The reason for my excitement is that Mayo Clinic's Dr. Halfdanarson will be speaking. Many of you who have been treated at Mayo for NETs have undoubtedly met with Dr. Halfdanarson. He is an excellent speaker and well trained in NETs. This will be both a Facebook Live presentation as well as available on Youtube for those not connected with Facebook. Here is the link for more information,
https://www.facebook.com/Carcinoid/photos/a.434139689226/10159025786344227/

In a Mayo Clinic newsletter I saw an exciting article about treatment for NETs. I think you will find all of the different treatments methods used by Mayo doctors to be very encouraging. Here is a link to the article,

- Georgia man with neuroendocrine cancer gains quality of life thanks to new nuclear med therapy https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-georgia-man-with-neuroendocrine-cancer-gains-quality-of-life-thanks-to-new-nuclear-med-therapy/

@dbmenger @tracyfurtiscaudle, @phoebeghostwriter, @cvb, @mfgw, @lenorahaston, @mwalum, @felo, @captain1950, @jhilbish, @rodelba, @netpatient, @tatteesmom3, @kate12345.

Hello to everyone in the NETs/Carcinoid Discussion group including,
@microbe1943, @dbmenger @tracyfurtiscaudle, @phoebeghostwriter, @cvb, @mfgw, @lenorahaston, @mwalum, @felo, @captain1950, @jhilbish @northwoodsbarb , @rodelba, @netpatient, @tatteesmom3, @kate12345. @laurell410, @jhilbish, @amariewilkinson, @mydadhadnetpancreatictumorandwhipple, @kjstein, @pjsheridan2022, @sophiarose @jay1225 @sturns @katherinepearl350 @jadedprincess @benr
@hoochinmama @marilyn2525

I would like to remind you of the virtual support group meeting this evening via Zoom. It will begin at 5:30pm-7:00pm EST. The guest speaker will be Dr. Sean P. Cleary, MD, Surgical Oncologist, Mayo Clinic Rochester
Please register in advance for this meeting as space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi
After registering you will receive a confirmation email containing information about joining the meeting.

This is a sharing/learning group and I'm sure you will benefit by attending. See you later this evening!

@kreamks1 @marilyn2525 @benr @jadedprincess @katherinepearl350 @northwoodsbarb @sturns @jay1225 @sophiarose @pjsheridan2022 @ahtaylor @kjstein @laurell410 @kate12345 @tatteesmom3 @netpatient @rodelba @jhilbish @captain1950 @felo @mwalum @lenorahaston @mfgw @cvb @phoebeghostwriter @tracyfurtiscaudle @dbmenger @amariewilkinson @mydadhadnetpancreatictumorandwhipple @immmm @gulzar @mkmm @eileenb1022 @cu2 @stan123 @ceavce @carcinoid23462 @harley4650 @sturns @gastrogirl @markmark007

Hello All:

This Thursday, September 1, will be our virtual meeting for Mayo's NETs support group. Please join us at 5:30 EST. You will need to register in advance and after registration, you will receive the Zoom link.

Please click the link to register in advance for this meeting:
https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi
After registering, you will receive a confirmation email containing information about joining the meeting.

Location
Zoom online meeting

Contact
Candace Porter, M.S.W., L.C.S.W.
(904) 953-6831
@candacep