Written by Lisa Yen, NP, NBC-HWC
LACNETS Program Director
September 26, 2018
It’s that time of the month again…
You receive your usual reminder for your monthly shot. Today is the day. You jump into your car and fight typical LA traffic to get to your oncologist’s office. You rush to check in on time and then wait the required 30 minutes for the medication to come to room temperature. After being escorted into the office, a blood pressure cuff squeezes your arm while you hold an ET-like probe on your forefinger and a thermometer probe under your tongue at the same time. You laugh at yourself as you awkwardly try to balance all the instruments for a minute or two. You are weighed, measured, and ushered into a sterile-appearing exam room. You wonder who will give you your shot today. Your anxiety and stress level have been rising steadily for over an hour, peaking just when an unfamiliar face enters the room with a familiar syringe in hand. Your heart sinks.
As you leave the office, you might feel a bit sore. Or, you might be floating with joy as you pass other cancer patients in the waiting and treatment areas, grateful for the ease and simplicity of your experience. You just received your once-a-month shot to treat your neuroendocrine tumor, yet you don’t feel like a cancer patient.
Why is there such a range of patient experiences with the shot?
What can be done to make my experience with the shot better?
Maybe you haven’t experienced physical discomfort with “the shot.” Maybe they don’t bother you at all. Or maybe, after a few weeks, your medical bill arrives, and you are shocked. You start calculating the amount of debt you’ll accumulate over months and years.
How can I get some help to pay for these shots?
A few months later, you’re due for your regular scan. You are bewildered when you see in your report “hypointense lesions within the subcutaneous fat within the lower abdominal wall” or “new nonspecific lesions within the subcutaneous fat” or “nonspecific nodules within the gluteal fat” or “granulomas within the subcutaneous fat.” Fear and anxiety begin bubbling up inside as you wonder if these findings are new tumors or if it means that you did not receive all of the medication from your monthly shot.
While these experiences may not be universal, they are common. The patient’s experience of somatostatin analogs (SSAs) continues to be one of the most common concerns regularly voiced at patient support group and education meetings. Here are some common questions:
WHAT ARE SOMATOSTATIN ANALOGS (SSA’s)??
Somatostatin is a hormone that is naturally produced in many parts of the body. Somatostatin analogs (lanreotide and octreotide) are synthetic versions of somatostatin that mimic its action. SSAs are considered the “first line therapy” for NET, meaning that that it is typically the initial treatment that NET patients receive.
Somatostatin analogs (octreotide/lanreotide/vapreotide) are now available in the US and other countries in three forms:
octreotide - (trade name) – Sandostatin s.c.®, and Sandostatin LAR® (given every 3-4 weeks) manufactured by Novartis
HOW DOES “THE SHOT” HELP ME?
There are two benefits of taking a SSA:
Symptom control of “carcinoid syndrome”: SSAs work by blocking the overproduction of hormones by the tumor cells that cause unpleasant symptoms such as flushing, diarrhea, and wheezing that affect the quality of life of NET patients. This may mean receiving a injection once a month. Some patients may also self inject a short-acting form of octreotide (known as a “rescue injection”) which can be given one to four times a day to help control symptoms that persist despite the monthly shots.
Tumor control: Long acting SSAs are the mainstay of NET treatment as they have been shown to slow down or even reverse the rate of tumor growth. This is supported by research from the CLARINET (lanreotide) and PROMID (octreotide) studies showing that these long acting SSAs can stop the growth of NET cells, resulting in slowing tumor progression.
WHAT CAN I DO TO MAKE “THE SHOT” LESS PHYSICALLY, EMOTIONALLY, OR FINANCIALLY STRESSFUL?
1. Educate yourself.
Attend the upcoming LACNETS meeting. To register, click here.
Here are some useful resources:
2. Keep a record.
Journal about your experience, side effects, symptoms.
Journal about your carcinoid symptoms in the period in between shots.
Keep a record of injection sites so YOU know and can inform the nurse when you arrive for the next appointment.
Talk to your physician. Share your experience with your medical team.
Communicate with the medical professional(s) who are administering your injection. Let them know what has and has not worked for you.
Talk to the patient navigator.
4. Get Help.
Ask a friend to go with you to appointments.
Talk to a representative or nurse from the manufacturer Novartis or Ipsen to ask your questions, voice your concerns, and provide feedback about your experiences. They may be able to send a nurse educator to educate the staff where you receive your injections.
Talk to your physician.
Talk to the patient navigator.
Try relaxation techniques such as mindfulness, meditation, or progressive muscle relaxation.
For financial assistance, enroll in the patient co-pay assistance program through the drug manufacturers:
For Somatuline Depot (lanreotide) www.ipsencares.com OR CALL (866) 435-5677
For Sandostatin LAR Depot (octreotide) https://www.hcp.novartis.com/products/sandostatin-lar-depot/carcinoid-syndrome/access/ or call 1-800-277-2254
WHAT QUESTIONS DO YOU HAVE ABOUT SSA’s?
Octreotide or Lanreotide? Which one should I be taking?
How often should I be taking it?
How often can I take it?
What if I have symptoms in between my shots?
Should I stop taking SSAs while I’m undergoing medical procedures (PRRT, surgery, chemotherapy, etc.)?
Will SSAs interfere with the accuracy of my Gallium-68 scan?
What are some of the possible side effects from SSAs?
What if I miss a shot?
What if I have to skip a month (for example traveling or sick)?