Updating about My Lanreotide Injections & CT Scan

@pavlina60 You have no idea how much your encouragement and monitoring of my health means to me! Your experience and willingness to share with the rest of us are over & above!! 🤗🦓😍

My husband was switched from Octreotide to Lanreoride 4 mos. ago & he said he has a decreased appetite since bring on this shot

Good morning, NET group. My saga continues with the introduction of a new med protocol, Temozolomide. My last scan showed significant growth in my liver tumor, so the lanreotide was NOT working. Last week was the toughest week I have had since my diagnosis & I have to repeat it every 3 weeks then a CT scan will be done in about 3-4 mos to determine its effectiveness. Has anyone heard that fasting before chemo makes it more effective? Since I’m struggling to avoid weight loss, that would seem counterproductive.
Side note: I purchased a wig because I’m told my hair loss will be significant by the next round & my granddaughter’s wedding is June 1st. Her dress code is black & white, so my zebra look will be right on point! 🦓🤣

I am also taking Temozolomide as part of the CapTem treatment. It is really important not to eat 3to 4 hours prior to taking the pill and take Zofran 60 to 30 minutes before the pill to avoid nausea. It worked for me. Good luck!

My experience:
After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to the liver (5 large tumors) by Aug. /2023 I was put on Lanreotide Then, in Nov. I had Bland Embolization on the largest (which worked to stabilize and shrink a little bit). Then, by Jan/2024 put onto PRRT (Lutathera) in Jan/2024. for 2 sessions and found that my tumors had aggressively grown. My Oncologist now wants to try the Captem (chemo) route, but, the talk is that it works better for Pancreatic cancers, so I am scheduled to have the new Histotripsy. I will report back if that works. Re: my jacket (below). I did get to wear it 2 times.

My dear! Hugs and strength to you is my wish! I cannot say about fasting before chemo, but I definitely felt better without food before my Lanreotide injection! And a tablet of Zofran about 10 min before. Then I had crackers and swiss cheese after.
I like your attitude - true zebra!🦓💜💜 Hugs and love!
P.s. my son' s wedding is next June, I hope I could be there for them 🤞

My husband is 81, and had to give up a trial of both meds as he was losing so much weight after just 3 months it was scary, he’s always been tall and slim so he couldn’t afford to keep losing the weight, he was eating well too, but the shots just seemed to exacerbate his diarrhea instead of helping it.
And his vitamin levels dropped precipitously.

I’m so sorry this happened to him. I guess it is proof that each person may react differently. Although, I did lose weight initially it leveled out & I was able to maintain once I got the diet restrictions figured out. Also, I tended to experience constipation rather than diarrhea. I hope he can find something that works for him.

Greeting from Canada. So pleased to see that you folks are sharing your life on NETs. I have nicknamed it NUTS! I am a 78 yr old male that was diagnosed with NETs at age 65. Since then, I have been on a form of Lanreotide called Somatuline Autogel. Every 4 weeks I self inject 120mg subcutaneously with a very long needle . The somatuline is packed in a disposable syringe, is pre mixed, and is very easy to use. It is delivered to my neighborhood pharmacy for pick up. This has been a real help to me since I do not have to see a doctor or a nurse for the injection. As well, with proper refrigeration (ice packs), I can take my medication with me if I happen to be going on a trip. Have hope all. I have survived 13 years with NETs. Still going strong.

Helpful, @orseijas, thank you. Do you experience any other side effects besides nausea? How are you doing?