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

Depending where in Illinois. I go to Carbone Cancer Center at U.W. Madison,Wi.

Where at in IL? I also live in IL & would be happy to share my NETS Specialist with you.

Hello @sadragliz,

I can understand your feelings when you say, "...did not realize this would be an ongoing illness." NETs, as well as other cancers, tend to be chronic illnesses. We all wish it were a one-time event, but unfortunately, that is not the case for most of us.

Now your question about a NET team in your area. If the Mayo Clinic in Rochester, Minnesota, is a comfortable drive for you, I recommend that you have at least one consultation with a Mayo NET specialist. This consultation might help set the course of your future treatment and give you a better understanding of this new occurrence.

If an appointment at Mayo is not possible, here is a list of NET specialists by state and by country. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. As I glanced at the list for Illinois, I saw several in the Chicago area.

Yes, please stay positive. Our attitude is the only thing we can control. Has the thyroid tumor been determined to be NETs?

Seeing Oncologist on Tuesday CT showed a 10mm at my thyroid, First lung tumor removed (NET) Now this, did not realize this would be an ongoing illness. Need to adjust my mentality with this. I may also need to find a NET team in my area. Do not have one now. I am in Illinois. Staying positive!!

Hollywood said " I just chomp down on a piece of leather and do a shot of whiskey". That's funny. Try that shot of cold spray. You'll like it. 🙂

I get the shot (Lanreotide) every 21 days and had my 41st injection yesterday. Fatigue is the only side effect and it doesn't occur regularly. No cold spray. I just chomp down on a piece of leather and do a shot of whiskey...no, I just deal with it and have learned any pain is short lived. good luck with your treatments and stay positive!

I appreciate your update, @michellehcapouch. You thought, "...but always ready, you just never know with NETS."

Whenever there is a NETs (or any cancer diagnosis), I have found it is best to look at it as a chronic illness that will always need attention, follow-up, and the possibility for new treatments and procedures.

Are you feeling better since the removal of the stones and the placement of the stent?

Well I had two amazing weeks after 2 enlarged parathyroid glands were removed. (Not NETS) just overgrowth. Back to ER Gull bladder has decided it needs a turn. Two stones removed from my bile duct yesterday and two stints placed. Gull bladder removal next but they are waiting to consult with Mayo.

When you think you’re good there are always surprise's. Be positive always but always ready you just never know with NETS.

Hello @perryleeoneal and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your journey with NETs. I am glad that you found this forum. It is a good place to share your experiences and to also learn from the experiences of others.

Here are some other discussion groups that you might find helpful,

--Diagnosed with Stage 4 Pnet metastasized to the liver
https://connect.mayoclinic.org/discussion/diagnosed-with-stage-4-pnet-metastasized-to-liver/
--Son, 48, just diagnosed with Pnet
https://connect.mayoclinic.org/discussion/son-48-just-diagnosed-with-pnet-pancreatic-cancer-8cm-tail-and-in-spl/
How are you feeling? Have you had much weight loss or loss of appetite? Has your blood sugar been affected by the surgeries to the pancreas?

The nurses where I go for this shot always have cold spray available and I always get that! About a 3 second shot of that cold spray and I don't feel the needle (which is the second largest one used by the infusion clinic where I go. I also remind the nurse to take her time giving it. It's the little things. 🙂