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

Hello @amygirl,

Often, size is not the most important factor to determine the need for the monthly injections, but carcinoid syndrome symptoms, such as having hot flashes, diarrhea, etc. Are you having a lot of these symptoms?

Also, are you currently being seen by a NET specialist, @amygirl? If not, it might be wise to have at least one consultation with one of these specialists. Mayo Clinic has NET specialists at all three of its locations. Here is a link with appointment information: http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is a listing of other NET specialists listed by state: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling? Are you maintaining your weight or losing weight? Is your appetite OK? I look forward to hearing from you again.

I had a really hard time for the first 6 months or so then it started getting a little better. I have them every 3 weeks and dread it however..........I have found that taking an ultram then I climb in bed on a heating pad. Usually if I rest I feel better the next day.

Yep, always out of the fridge for at least 12 hours before but it's not the pain of the injection so much I have learned to live with that, it is the side effects. I literally have 1 week.of feeling OK per month

So at least one is an inch or more? Do u know the size when u found out? How long from the time u found out u had NET til u started injections? Do u have fast or slow growing? Thank you

Do they warm the medicine to room temp before injection? If not than that cold fluid will be very painful going in. Most nurses warm it first, but some are in a hurry and just don't care that much.

Ask your physician for a lidocaine cream prescription. Apply a dime size amount to the injection site & cover with tape, press n seal or Saran wrap 45 minutes prior. Helps immensely!

Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of stopping as sideceffects awful. The actual injection is sooooooooooo painful too. I feel so lethargic like I cannot get out of bed. Cannot do anything as feel so weak.

Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas (head 3cm, body 3mm, tail 3mm, lymph node 4cm) …. Whipple in January ‘21, removed head of pancreas, all lymph nodes at pancreas and did “normal” Whipple stuff …. Scans and blood work every 6 months, metastasized to liver and another lymph nodes 3 years later, (4) total tumors again …. (3) on liver all @ 3cm now, lymph node tumor is @ 4.5 cm …. Started me on the Lanreotide injections once a month @ 6 months ago but last set of scans in April showed it to be not effective in slowing down the growth of the tumors have another set of scans in August …. If injections are still not working as intended then will probably get more aggressive ie. (PRRT, ablation or resection) All my care is being taken care of at The MD Anderson Cancer Center in Houston …. Perry

Hello @mballinger51 and welcome to the NETs support group on Mayo Connect. I am so glad that you found this forum and have shared your experience. NETs is a rare cancer disorder and it a good thing to find others who are walking the same path. I am happy to hear that the monthly injections have lessened so many of your symptoms.

As you are new to the group, I look forward to getting to know you. Would you share a little about your diagnosis? For example, how long ago were your diagnosed, were the symptoms that you mentioned the ones that led to the diagnosis?

What are the sizes? I was told I wouldn't be started on a shot until one or more is 1 inch.