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Any one with Neuroendocrine tumors getting the shot once a month?
I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?
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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!
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2 ReactionsI 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?
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1 ReactionWell 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.
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3 ReactionsHello @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. 🙂
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3 ReactionsNo nets in parathyroids just non cancerous growth.
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1 ReactionI absolutely agree! The experienced nurses take 30 sec to 1 min to give the shot. It really needs to be slow.
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1 ReactionI appreciate your proactive approach, @tmneuo. We have a lot we can share with our medical team.
I agree! Over the last 13 years of getting these shots I have had to educate nurses who did not know how to: mix the sandostatin drug... and now on Lanreotide I make sure they know to give the shot slowly. I have learned to ask each month, even though some nurses do not appreciate me doing that. But it is my body and I want to get the full effect of it.
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3 ReactionsHello @michellehcapouch and welcome to the NETs support group on Mayo Connect. I see that you are new to this group. In reading your previous posts, it looks like your diagnosis occurred in 2019 and that you have had two surgeries as well as the monthly injections.
It appears that you also had two parathyroid glands removed. Were NETs also found in the parathyroid glands, or were the parathyroid glands removed because of a non-cancerous growth?