Meeting Date: October 9th, 2018
@Cedars-Sinai Medical Center
LACNETS Patient Education Seminar
Andrew Hendifar, MD, Oncology, Cedars-Sinai
Q&A with Dr. Andrew Hendifar
1. I have heard it is advised not to take a hot bath for 24 hours after a sandostatin injection. What do you think?
Dr. H: I am not aware of any issue with taking a bath.
2. Is high blood pressure (hypertension) a side effect of SSA?
Dr. H: Typically, no. It is not something we see often with SSA. It is usually related to the disease, carcinoid syndrome or other things going on in life.
3. Does SSA interact with other medications?
Dr. H: Nothing comes to mind.
4. How fast does sandostatin get into the system?
Dr. H: I’m not sure it really matters. Both work for symptom control and to control tumor progression. Looking at how the drugs work (pharmacodynamics or pharmacokinetics) not something we really need to worry about.
5. What happens if a dose is missed or skipped?
Dr. H: Forgetting a dose for a few weeks is typically okay. We don’t encourage it but it’s probably okay. For those with carcinoid syndrome, this is more of a concern.
6. What about rubbing the injection site?
Dr. H: I wouldn’t worry too much about it. There are some little intricacies to the injection and even if it doesn’t go perfectly, I wouldn’t worry too much about it.
Note about memory: One thing we do worry about is memory. I’m convinced that the tumor may have some effect on that. Also, memory may be affected by aging. If memory is becoming an issue, address it. There is neuro-psych testing that can evaluate if there are other things affecting memory that can be addressed.
7. I had an experience with an injection given very quickly which resulted in a lot of pain for 24 hours.
Dr. H: Giving any shot slowly (into the muscle) helps. Sandostatin is a large volume of medication injected in the muscle so pushing this into muscle is uncomfortable. Giving it slowly can help. Walking is often the best thing you can do for discomfort after sandostatin.
8. If you have progressive disease, would you switch to another SSA?
Dr. H: There is no research to suggest that switching SSA would help.
9. How long should the medication be given over?
Dr. H: Lanreotide is injected over 20 seconds.
10. If the medication is not given properly, does it affect the effectiveness of the medication?
Dr. H: Typically, the biggest issue is pain and not the effectiveness. If there is a concern, you should discuss this with your physician.
11. What about checking the levels of the SSA to see if we are at the optimal levels in our blood?
Dr. H: I would not encourage it. In the past, these were the only therapies available. It used to be standard practice 20-30 years ago to check levels and adjust the medication accordingly. Now, most of the formulations work very well.
Checking levels is typically not practical nor helpful. Also, checking levels requires correct timing and careful laboratory testing. It introduces a lot of uncertainty. Nowadays, there are many other therapies and it may not be worth our time and effort to check levels to guide management.
12. I had an experience where the medication wouldn’t go in and the nurse had to give the injection on the other side. Is that okay?
Dr. H: Unfortunately, that happens sometimes from the medication thickening. It is okay…nothing was wrong with the medication.
Getting the medication on the same side two months in a row is okay. Switching injection sites is mostly for comfort.
13. What is the main side effect from the shot?
Dr. H: The biggest side effect is that the medication causes the pancreas to produce not enough enzymes to digest your food. This is “EPI” == Exocrine pancreatic insufficiency. Your fat digestion isn’t as good as it should be and your diarrhea changes to a light color. It can be oily and it might float. The symptoms can worsen with certain things you eat.
You can take pancreatic enzymes (pancrelipase). There are 3 different types that need a doctor’s prescription: creon, pertzye, zenpep. They all work. Unfortunately, the co-pays can be quite high. The enzymes are porcine. When you get them over-the-counter, it is hard to say.
14. If you don’t have diarrhea, should you still take the enzymes?
Dr. H: No.
Even if you have diarrhea, if it’s a little bit, you don’t necessarily need to take it.
The biggest issue is a misunderstanding of what is going on. Patients often think that they don’t have carcinoid syndrome and then once they start getting the shot, they have carcinoid syndrome. This isn’t necessarily the case. It is often an issue with understanding what is happening, that diarrhea doesn’t mean you now have carcinoid syndrome but that there is fat malabsorption or EPI. Once you have a correct understanding of what is going on, you can work with it and go from there.
15. What can be used other than SSA? What about immunotherapy?
Dr. H: Start first with SSA, if you are a candidate for it.
If you have poorly differentiated NET, you are typically not on SSA. If you have well- differentiated, SSA is an option.
It depends on what location the tumor is coming from:
If you have pancreatic, lung, or everywhere else, everolimus is an option.
If you have the same receptors that light up on the Gallium 68 scan (somatostatin receptors), PRRT is an option. This delivers radiation to the tumor by attaching it to a radionuclide.
Immunotherapy is still under research and it depends on tumor type and location. We don’t know yet if it will work and for which patients it will work for.
If you have poorly differentiated or high grade, immunotherapy seems to have a more role. If you have a high grade lung NET, immunotherapy is approved.
There are many more studies that will be happening with immunotherapy in combination with other treatments. You want to start with treatments that are known to work before trying treatments that are not yet known to work.
16. What about taking probiotics?
Dr. H: Probiotics can be helpful with diarrhea since factors such as being in the hospital, stress, and antibiotics can affect the gut flora. I recommend you get it from yogurt (no added sugar), meaning natural sources. Taking supplements is okay too.
17. What can the patients do if there are issues with the shot?
Dr. H: Give feedback to your physician about any issues you might have and if needed, ask for more training to be provided to the nurses. The medication comes with instructions. Both pharmaceuticals have available resources and can come into the office to give training.
18. If you’ve tried creon (and on the right dose & right timing) and still have diarrhea from the SSA, can you take imodium?
Dr. H: Yes, if you take imodium short-term.
Make sure you’re on the right dose of pancreatic enzymes as it is often underdosed. The appropriate dose of pancreatic enzymes is 1,000 units per kilo per meal so for a normal person, this is 70,000 units per meal.
Make sure you’re taking pancreatic enzymes at the right time which is right before the meal and also before snacks. If you are eating over a long time (i.e. long meal), you might have to take some more enzymes.
19. Can increased nighttime urinary frequency be related to SSA?
Dr. H: It is typically not related to SSA.
It might be related to high blood sugars.
It might be related to prostate issues; you might need to talk to a urologist.
20. Some people mentioned fatigue as a side effect, have you experienced that?
Dr. H: I’ve had patients report fatigue. However, it’s hard to say what the fatigue is from. Fatigue is a commonly report side effect of any cancer.
21. Is diarrhea from carcinoid syndrome or from EPI (exocrine pancreatic insufficiency)?
Dr. H: If you didn’t have diarrhea (and stomach pain from bloating/gas) before starting SSA and then after starting, you have diarrhea (and stomach pain from bloating/gas), you do not have carcinoid syndrome. This is from EPI, exocrine pancreatic insufficiency of fat malabsorption. The most important thing is that you don’t stop the therapy. There is a good solution: pancreatic enzymes.
EPI can cause gas, bloating, stomach pain, and diarrhea that happens after you eat and is worse with eating fatty foods.
22. Should I be on octreotide during surgery?
Dr. H: If you do not have carcinoid syndrome, you don’t need to be on octreotide during surgery.
If you have carcinoid syndrome, you should be on octreotide during surgery. You should tell the anesthesiologist. It is important that your medical team is aware and prepared.
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For more resources including additional information, financial assistance, a symptom tracking app, please visit the LACNETS resources page here.