Any one with Neuroendocrine tumors getting the shot once a month?

Hello @elainekb4 and welcome to Mayo Connect. I appreciate you sharing your NETs journey. Your story points out that NETs is a different journey for each person.

What treatments are being discussed for the current tumors in your bone?

I am 57 oops. Thank u

I was 39 when the first tumor was discovered in between my small and large intestine. Surgery removed it. 10 years later a couple showed up in my breast. Since then in the past 16 years all was pretty quiet then I developed a tumor in my back, my leg, and now activity is showing something in a couple of bones. It is hard to find a neuroendocrine specialist. But do find one as they are more aware of this type of cancer. I am now 66 and still feel good. And still learning. You have this.❤️ Just make sure you keep informed and if you can, go to Mayo if you ever want a second opinion. They are amazing!

Hello @amygirl,

As with all cancer treatments, including those for NETs, each person will respond differently to the same treatment. Many people who take the monthly injections do have a reduction in the size of their tumors and others might have a reduction in the symptoms of carcinoid syndrome. Others might respond better to another type of treatment. There is not a "one-size fits all" treatment for NETs as the NETs are all different.

Even among NETs, there are differences in the type of tumor and its response to treatment depending on many variables such as whether it produces hormones, etc. I suppose there is no way to know why one treatment might work for one person's NETs and not another. As @dbamos1945 said, the most important thing you can do for yourself is to connect with a NETs specialist. Not all oncologists are well versed in this type of cancer. A NET specialist can look at your biopsy reports, scans, blood work, etc. and advise you on the best treatment plan.

Will you consider a consultation with a NET specialist?

@amygirl: If you have a NET diagnosis and biopsy has revealed K67 stain “Stage & Grade”, then you would benefit from a treatment consultation from a NET Oncologist Expert to determine your best treatment route. NET cancer has drastically different growth rates, usually slower growth and we aim for stable growth patterns. It is not like any other types of cancer.
At your young age you must educate yourself on this type of cancer and understand that you need to be proactive with controlling tumor growth and cancer metastases to give you best prognosis (I am 80 but have found ways to enjoy a good quality of life).
There are many successful reports from NET treatments. The first is usually the Lanreotide 28 day shot that offers symptom control and relief. This is an effective tool as well as regular blood tests and scans to help your Oncologist with additional treatments when necessary.
I encourage you to join virtual NET support groups that will prove to be allies offering answers to your questions, recommendations from patients, and new researched treatments available. Expert Oncologist’s lectures are available on a zillion related topics that will expose you to the “lingo” that docs and patients will use. The HOPE is contagious and YOU are not alone on this road of Neuroendocrine Cancer. My best thoughts are with you! dbamos1945

I was under the impression the shot was suppose to keep them from growing and i would think not get new ones but u have new ones? What did they say about why your getting new ones? Where? Could I ask your age? I am 37 with tumors in my liver. Not taking shot yet. Thank you good luck.

I have been getting the shots for 4 years. I can't say for sure if I have had any side effects. I am always tired, blood sugar has raised a bit and so has my blood pressure. Are these from the shot? I think so but cannot with 100% certainty, blame it on the shot. It has stabilized my tumors mostly, but since being on it, I also have had tumors show up elsewhere. I was told that if I wasn't taking it, I would be having a lot of symptoms! Good luck!!

I hope you will post updates, @rkklinger, about your husband's journey with NETs. If you have any questions or would like to share, please use Connect as a place to get support.

No. He doesn't seem to have any pain from the tumors. He experiences pain in his left side back after eating at times. He has to lay on that side and take Gas=X. It usually subsides within 20 minutes especially if he is able to lay down.

Hello @rkklinger and welcome to Mayo Connect. I really appreciate your post. Your husband's level of activity is encouraging to us all! It does show how NETs is a chronic disease and one that can be lived with for many years. To those in our group who are newly diagnosed this can be good news. You also demonstrate the importance of maintaining regular follow-up appointments.

Do the tumors in the skull cause him much discomfort?