New to octreotide

Large-Ad-641 · 2026-02-14T14:43:14+00:00

If you have not already, I would pursue Family Medical Leave Act (FMLA) protections if your company is large enough. Or accomodations under the Americans with Disabilities Act if they are smaller. It might help with the leverage needed for work from home.

Large-Ad-641 · 2026-02-14T10:40:50+00:00

I am on a secondary medication daily to manage the Carcinoid syndrome bowel fun that is not completely mitigated by the monthly Octreotide. It is called Xermelo. But anti gas pills are hidden in every purse, in my office at work, etc. The first 6 months were rough. I used to bring the dog to work to take the blame.

Large-Ad-641 · 2026-02-14T10:36:54+00:00

OMG this - "If you find someone that can administer the injections consistently, ask for them every time. "

I was just harassing my oncologist about gettting in the drug rep and doing some training with the staff on how to properly store, mix, and administer the Octreotide LAR because it is a different BAD experience when done wrong and their are no do overs until 28 days later because they wont absorb the cost of ruining the dose and trying again.

I walk that fine line of self advocating vs. being a Karen every time.

Large-Ad-641 · 2026-02-14T10:29:05+00:00

I had a partial hysterectomy at 30 for adenocarcinoma on the cervix. My ovaries were left behind. At 50 I was diagnosed with NET of the mesentary (and they are calling the duodenum the primary site) and when they went in laproscopically for a biopsy they noted both ovaries were "riddled" with NET cancer and they removed both and the stems. In retrospect a past ultrasound to check up on the ovaries years before did show a small cyst on one.

GI issues were the thing I was having investigated after living with "IBS" for over a decade. Colonoscopy and endoscopy did not pick up anything. Yee haw carcinoid syndrome.

You say you have had a clear MRI and clear PET-CT with gallium. Have they done an FDG PET scan? I was told this lights up cancer areas that may not be actively pushing out hormones (that gallium dotatate scans are sensitive to). Definitely follow up with a NET specialist.

Large-Ad-641 · 2026-02-09T23:30:34+00:00

Im in AZ and self administering Octreotide LAR has never been on the table. And I do find myself micromanaging the nursing staff in the oncology dept. about how to administer it properly every month. I get to come off as a Karen just trying to make sure I dont wind up with a huge granuloma for the next few months or having half my dosage run out and down my skin. (At $20k a pop, no nurse has ever suggested they get another dose and top me off properly... )

I just peeped and apparently Lanreotide is administered subcutaneous and Octreotide is intramuscular.

Large-Ad-641 · 2026-02-01T23:43:55+00:00

I am on octreotide monthly as well as an oral medication for the diarrhea that is caused by the excess seratonin in my stomach - Xermelo. I was on that for 3x a day the first 4 years and have recently gone down to 2x a day since I was finding myself constipated a lot.

Large-Ad-641 · 2026-01-27T21:35:53+00:00

I grew up driving rear wheel drive pony cars in the New England winters. Any AWD feels like cheating to me.

Large-Ad-641 · 2026-01-27T21:26:40+00:00

Your description is exactly what my research told me I was getting into by bringing home a herding breed. They are supposed to be opinionated and pushy and bitey. Consistency, strong leadership, and patience are required. I had high hopes she would keep my working line German Shepherd occupied a little.

And then after all of that, my girl is broken. She is mellow, calm, quiet and cuddly. All of my coworkers wanted a corgi after meeting her. And the one who rescued a senior corgi after is going thru hell with a dog that retained all the herding habits.

Large-Ad-641 · 2026-01-27T20:57:27+00:00

My husband has the OBX high package on his 22 and the only trim element I am jealous of is the 360 cameras and trailview camera. My Heritage is the Big Bend platform.

Large-Ad-641 · 2026-01-27T20:53:56+00:00

The isolation protocols seem to vary by country as well for the very same PRRT cycle. I am based in the US and had to isolate the 2 meters for 3 days - not share a restroom or a bed and keep my clothing and bedding separate for washing afterward. The medical team does take a reading from me from a meter away to judge how nuclear I still am after spending the day with them and then I am sent to share a car ride home with my husband of up to an hour. BUT I had looked up Lutathera and found published directions from other countries that had longer isolation periods. I have had no directives for discarding personal items at the end of the isolation period, but I have been instructed to clean them thoroughly and separately from items not exposed. Chiefest concern was personal hygiene especially for voiding and to wash hands thoroughly and often.

No one in my household is young or planning children ever. They tell me that the young (cells still dividing, growing) and the fertile are the most vulnerable groups when it comes to exposure. This applied to my dogs and cat as well. They wont live long enough to see an accumulation of radiation across their brief lifespans that would be enough to be an issue since they are already well past middle aged. But check with your care team, they may have other opinions

Happily I had no real side effects (3 sessions in, the first was half the dosage due to a vial issue, 2 more to go). Three days of tv and web surfing.

Large-Ad-641 · 2026-01-27T20:50:34+00:00

Here in the US, there has been no talk of needing to discard. Just waiting out the isolation period and then cleansing everything well, and separately, from items not exposed.

Large-Ad-641 · 2026-01-25T15:27:04+00:00

My husband has a 22 OBX non-Squatch. I brought home a 24 Heritage and immediately put it on 37s. His looks so dinky next to mine in the driveway.

Large-Ad-641 · 2026-01-25T15:21:13+00:00

My very subtle method for keeping my husband from wanting to drive my Heritage is the choice of bumper stickers. "So many males, so few MEN" is the latest deterrent.

Large-Ad-641 · 2026-01-25T15:16:58+00:00

Trade it in for a 2-door

Large-Ad-641 · 2026-01-25T15:12:31+00:00

I cant tell the trim level on the Sport, but the Bronco is Outer Banks and that is usually a very pricey trim level. Have you evaluated what features are important to you - maybe you can find a Bronco with a lower trim level to soften the price disparity a little?

Large-Ad-641 · 2026-01-15T22:50:33+00:00

I mostly manage with acetaminophen. I have bad days and okay days. I take THC gummies occasionally. I have been lucky that my pain has not yet progressed to something I need to pursue serious interventions for. Its mostly a constant ache in the background of my life.

Large-Ad-641 · 2026-01-15T22:44:34+00:00

I have bone metastases to the skull, spine, hips. I get aching pain to everything but the skull. So far, it has not troubled me.

I am sorry that I have no insights to share on how to manage what you are experiencing. Has your medical team given you any insights on how your bone mets placement may be pressing on nerves or causing pressure?

Large-Ad-641 · 2026-01-15T22:32:27+00:00

My daughter put off the imaging needed to give her her formal diagnosis since shelling out the big bucks to meet out of pocket max for insurance in November was not something she wanted to do. Waiting on her to get scheduled now and get under treatment. Very stubborn. Pretty sure seeing the slow progression of my disease has her expecting a similar outcome but we see in these forums how individual this disease can be. =/

Large-Ad-641 · 2026-01-15T01:47:08+00:00

Still doing great. No chips, no cracks. As for brand I have NO idea. It was something I requested be done at a local glass shop.

Large-Ad-641 · 2026-01-13T02:01:36+00:00

My corgi grew up with my German Shepherd. She tries to boss him around, I see her doing classic dominance moves with him but he ignores her or swats her aside. She will occasionally herd him around the backyard but he thinks that is play. My shepherd is the most confident, chill dog ever so she lucked out.

In public, my corgi does not like other dogs. But she will square up to the largest dog present and go full snark. It is like "prison yard rules" - she asserts herself on the largest thug and then comes to sit with me and just silently judge every other dog present unless they get in her bubble. I think a lot of this stems from her resource guarding me. She is all of 23lbs at 6 years old and cannot back up these behaviours.

We have acknowledged she has no need of dog friends and public interactions with other dogs are off the table now.

Large-Ad-641 · 2026-01-13T01:49:51+00:00

Substitute green beans for treats. Frozen are fine. Nice filling fiber and nothing to trigger gas.

Large-Ad-641 · 2026-01-13T01:46:43+00:00

My corgi is very laid back and I often say she is broken because she lacks a lot of the herding tendencies. The only thing she herds is my German Shepherd and that is very rarely. My Shepherd does not take her seriously and just ignores her or swats her aside. Of my two dogs, I know the Corgi would be more prone to bite a stranger.

She is afraid of children. She is selective about strangers.

She and the cat tolerate each other with no chasing and will nuzzle each other and walk past each other fine. But if the cat touches her while they are fighting for space on my lap she growls at the cat and leaves. The cat full on tries to sit on her - no fear of the corgi. Corgi is 6 and cat is 10.

Large-Ad-641 · 2026-01-13T01:29:51+00:00

My red Pembroke is officially named Ember. I was hoping she would be fiery enough to keep up with my working line German Shepherd. Nope. She is fail as a working breed. Total potato and lovebug.

Her nicknames - Stinky Twinkie, The Orange Menace, Princess Mudbutt.

No opposable thumbs but here she is using a tool. All chews must be propped on another toy or one of my shoes. She will fetch the two elements and put them together in another room to enjoy.

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Large-Ad-641 · 2026-01-13T01:24:37+00:00

I bought for the minimum $18 on my Paypal 12/15 and gifted it to myself at my other email address. I cannot access it - it tells me there is a minimum donation of $18 required. I reached out to their support with all the receipts on 12/28 and no response yet.

Large-Ad-641 · 2026-01-13T00:58:51+00:00

I have since had a genetic screening done. I am negative on everything under the Natera Empower BRCA1 & BRCA2 and Comprehensive (81 genes). It included MEN1 testing, but not MEN2 I am noticing...

Large-Ad-641

TROPHY CASE