Anyone have side effects after Lanreotide injection?

@brucegs
It is good to read about your PRRT success. At the same time I am sorry that things are complicated by the co-morbids and need additional medical assistance. The diet limitations are such a challenge. I found help with a nutritionist who was willing to consider a range of ideas and a plan to help keep me on track. Palliative Care might also be a resource in coordination. Am so hoping you find the support needed to deal with all of this so that it can become less work to decipher and monitor. I am impressed with your Doctors that they caught the blood work and acted to find you a nephrologist.. and impressed with your questioning and concern. We are all learning self advocacy better and finding resources and solidarity together.

Hello @brucegs,

You do have several different medical issues that affect your eating. As @maeve115 suggested, I would also recommend asking for a referral to a registered dietitian. Your oncologist or PCP should be able to provide a referral. I have had three surgeries for NETs, and I have met with a hospital dietitian several times; they are unsung heroes in medicine. They are quite capable of helping you develop an eating plan for different health issues.

Have you begun using Creon yet? If so, has it helped?

@micahnes Hi and welcome to Mayo Connect. I have been living with a pNET for four years. I do not get the lanreotide shot. I can't attribute any the symptoms that you described to my pNET. Are you still having them?

@reinmac Have you had your first shot yet? How are you feeling?

@tomrennie hi and thanks for your interest. I stopped Lanreotide after only one month. Symptoms were significant. Most concerning to my oncologist were the slow heart rate, daily at rest 42-46 and dipped to 39 during sleep. My oncologist hypothesizes that all symptoms may be related to the heart rate. Additionally, my heart rate was low (50 resting and 45 in sleep) even before the injection. This may in some way be linked to the pNET. The lanreotide seemed to amplify this. My PET scan showed that my tumor was highly hyperactive in somostatin, while lanreotide is a synthetic somostatin. Does this make sense to anyone?

@micahnes I am unaware of a low heart rate being caused by a pNET. I am not saying that it isn't possible. Somatostatin receptors are usually overexpressed on the surface of well-differentiated neuroendocrine tumors. That's how lanreotide, and other NET treatments, frequently work. They seek out those receptors and attach to the NETs treating them. So, it makes sense that your tumor was active in somatostatin. Do you know what grade your pNET is? Has it spread anywhere? Are you seeing a NET specialist?

@maeve115 thank you for your encouraging comments!

@tomrennie Thanks again! It is Grade 1. My Oncologist is not a pNet specialist but my surgeon is. I am trying figure this out if my symptoms are caused by the tumor to determine if I should get surgery in hopes of stopping these symptoms. Clearly the lanreotide exacerbated these symptoms (that are not typically linked to pNet). But it was like kicking a beehive. So my thought process is that my tumor is doing something that the lanreotide amplified. I saw the link to somatostatin and drew that conclusion. The outward manifestation of these symptoms are tingling and extreme chills. No blood tests or neurological tests show a root cause. The symptoms appeared about a year prior to finding the pNet and have remained. All doctors and specialists are baffled (Cardio, Neuro, Sleep, Primary Care). The general opinion is that based on the time concurrent with the tumor it is likely related - - have the surgery and hopefully that resolves it. So I am looking for anything that can confirm the link to the tumor. Anyone else find the heart rate (last night 38 bpm) concerning? Or anyone see a link of the symptoms to the tumor?