Anyone have side effects after Lanreotide injection?

@maeve115 thank you for your encouraging comments!

@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?

@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?

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

@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?

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?

@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.

Both an answer and a update: after yesterday's ending visit with the PRRT oncologist, she (as was my surgeon Wednesday) are pleased with the results showing both diminished and stablized cells. But, to counter my usual diarrhea effects of my lanreotide, she is prescribing Creon to counteract that. And also is referring me to a nephrologist since the treatments and contrast scans necessary for the NETs seem to have hurt my kidney functions. How does anyone handle all the diet limit ationsfor lanreotide, diabetes, and kidney health which seem to conflict with each other?

@micahnes
That is a list of side effects. I am so sorry that you are experiencing all of this. This list seems to be worthy of reporting to your Doctor.. You deserve an explanation and reassurance. Hopefully you will get answers, monitoring and some solutions too.

@vinnie694
Vinnie, I suspect that fatigue is the most reported side effect of the shot. I get it too. Adding a needed Benadryl certainly could increase the usual shot fatigue. I use a four hour short acting Benadryl substitute which is over the counter and purchased through Walgreens. It is potent just enough to get me over the hump. Some folks can do the full strength Benadryl but I would be out like a light. My Doctor has agreed on this. Fortunately on the third day after the shot, I rise again to my regular NET tiredness!! Wishing we all feel energized in some inexplicable way !