New and concerned about my wife.

Hi Chaplain Dan,
Your wife’s initial case is similar in many ways to mine… 12 years ago I had surgery for a lime size blockage/mass near my terminal ileum; they resected part of my intestines, and I was left with mesenteric tumors, cancerous lymph nodes, and liver nets. My NETS are well differentiated and grade 1 - slow growing. I have been on monthly Octreotide (Lanreotide) shots for the past 12 years, and thankfully my tumors continue to be stable. I am monitored every 8 months with an MRI at the Moffitt Cancer Center in Tampa.
Your wife has more going on than my case for sure. You said she is under the care of a specialized team and that is great as this cancer can be very tricky and no two cases are the same. You asked if this was unusual for new growth to be noticed so quickly, and I have no answer to that question other than each case seems to be different and since hers is grade 2 there is more activity. I am glad her care seems to be very proactive.
Tim

I found this info on the internet. Might be useful to understand these drugs.

Octreotide is made by Novartis. Lanreotide is manufactured by Ipsen.
Octreotide has been around for much longer.
The long-acting versions are made and absorbed very differently. Octreotide has a complex polymer and must be injected into the muscle to absorb properly. Lanreotide instead uses has a novel nanotube structure and is water-based (click here to see a video of how this works). It is injected deep-subcutaneously and is, therefore, easier to absorb and is not greatly impacted if accidentally injected into muscle.

Their delivery systems are mainly via injections but are fundamentally different. Octreotide long-acting requires a pre-mix, whilst Lanreotide comes pre-filled. Please note that Ipsen is rolling out a new Lanreotide delivery system. You can read a review entitled “An International Simulated Use Study (PRESTO) to Evaluate Nurse Preferences Between the Lanreotide Autogel New Syringe and Octreotide Long-Acting Release Syringe” – click here.
The long-acting versions are 60, 90 and 120 mg for Lanreotide and 10, 20 and 30 mg for Octreotide.
Octreotide also has a daily version (or rescue shot) which is administered subcutaneously. Dosages range from 100-500 micrograms. A rescue shot is essentially a top-up to tackle breakthrough symptoms as quickly as possible (I have heard of some Lanreotide users also taking Octreotide rescue shots).
You can also ‘pump’ Octreotide using a switched on/off continuous infusion subcutaneously.
Other than for lab/trial use, to the best of my knowledge, there is no daily injection, rescue shot or ‘pump’ for Lanreotide that is indicated for patient use.
Whilst both have anti-tumour effects via studies (see below), there are differences in US FDA approval: Octreotide (Sandostatin) is approved for symptom control (not anti-tumor) whereas Lanreotide (Somatuline) is approved for tumour control. However, the US FDA added a supplemental approval for Lanreotide syndrome control on the basis that it is proven to reduce the need for short-acting somatostatin analogues use – read more here. This supplementary approval followed the ELECT trial – results here. Read more about Lanreotide clinical trials here. The study confirming the anti-tumour benefits of Octreotide can be found here.
Octreotide has had many variants or ‘generics’ deployed over the years, Lanreotide variants only turned up in late 2021.

Hi, my husband has very similar diagnosis in Feb. Has had 1 injection, 120mg. of Lanreotide. 2 more and then re assessment. As far as we can tell no side effects.

Thank you all so much for your help and support. We are indeed very pleased with her team, they do everything they can for all of us. She had her first infusion yesterday and so far, she seems okay. Thank you for the information on the Somatostatin Analogs, I am mistaken, my wife is receiving Lanreotide and that information was so helpful. She is also receiving the 120mg. Each of you are in my thoughts as well. Thank you again.

Hello @chaplaindan and welcome to the NETs support group on Mayo Connect. It looks like you have received a lot of helpful posts already. This is a great forum to get support, encouragement, and information.

I appreciate your seeking to learn as much as you can about this rare cancer. It is difficult to face the unknown, however, gathering as much information and education is important.

My first comment would be to seek at least one consultation with a NETs specialist. After an initial consultation, a NET specialist, will often work with your local oncologist to direct the best care possible for your wife. Mayo Clinic has NET specialists in all of the three Mayo locations. If you would like to consult at Mayo, here is a link with appointment information, http://mayocl.in/1mtmR63

If, for any reason, you cannot get a Mayo appointment, the Carcinoid Cancer Foundation has a listing of NET specialists throughout the U.S. and perhaps you can obtain a virtual appointment if there is no one nearby, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I would also invite @kim1965 and @tomewilson to this discussion as their wives also have NETs and are active in their care.

What symptoms led to your wife's diagnosis?

Hello Teresa and thank you so much for the warm welcome and wisdom. We are very blessed to have one of our states leading NET specialists so close to us along with an entire team dedicated to the needs specific to NET care. After my wife's surgery, her doctor had recommend this and the NEC team are taking care of all of the needs. They have been a blessing. Thank you again for all of the help as I am so grateful for all of the support on this difficult road ahead.

It is a difficult road, @chaplaindan. I am glad you found a good medical team and also Mayo Connect. Connect has many members who have taken this NETs journey and are more than willing to share their experiences with others.

I have had three surgeries for NETs and I understand the feelings and anxieties that it creates.

Will you continue to post your questions?

Hello Teresa, thank you again to you and to all for your support. I absolutely will continue to post. I am so encouraged to read of the many stories and experiences of others, which most assuredly helps in my wife's and my daily walk. We have an incredible team for the medical and even for the emotional concerns but to be able to walk alongside others who know and understand by experience is priceless.

Hello Teresa, Curious to know what surgeries you had? Any involving the liver or pancreas?

@billbo

I have had three surgeries. The first two were invasive surgeries (resections of the duodenal bulb). I was hospitalized for 5 -6 days each time. When I needed the third surgery, I consulted with a university medical school where they had a doctor who did surgeries of this type using an endoscopic procedure. I was in the hospital for 4 hours total. It was a good decision!

I have not had any involvement with the pancreas or liver at this point.