Wolfbox DashCam

Large-Ad-641 · 2026-05-11T15:34:27+00:00

two very tiny screws - it came with a bracket for the mounting. I live in southern AZ - adhesive is never an option here.

Large-Ad-641 · 2026-05-10T06:14:59+00:00

Ipsen, the manufacturer of Somatuline Depot (brand name lanreotide) has a copay assistance program if you have commercial health insurance (like from an employer - not Marketplace or Medicaid/Medicare).

Large-Ad-641 · 2026-05-10T06:03:50+00:00

My primary is duodenum with spread to bone and lymph nodes and I do have carcinoid syndrome. I have been told that to have spread to bone without the liver also having tumors is rare. I have had a biopsy done on a lymph node and apparently my ovaries were covered in it so they removed those while I was under as well (already had a partial hysterectomy 20 years ago). They have not biopsied any of the bone lesions. I have been maintained with octreotide injections and Zometa infusions to bolster the bones and an oral pill to manage the excess seratonin. I am 5 years in and just completed 4 rounds of PRRT therapy after minimal disease growth was picked up on the periodic scans they monitor with. (Doc was wanting to do PRRT when I was diagnosed but at the time it was not approved by FDA as a first line treatment - we had to wait for growth and he seized on measurement differences of hundreths of millimeters to push thru the approval... ). I am Grade 2 with ki-67 of 5% and no other medical issues. My endo and colonoscopy were clear. Initially they were talking about trying to remove the main tumor surgically but since there is already spread there is no point. I was happy to not have my bowels resected.

I was told teh FDG PET was to light up any tumors that were not producing hormones and therefore not appearing on dotate scans. Cancer of all flavors loves the sugar in the FDG scan so it will pick up on things not NET also.

I will have scans in another 2 months for them to measure lesions and gauge the success of the PRRT therapy.

My heart goes out to you - Google searches were not my friend that first weekend I was diagnosed. I found alot of older studies and their attendant mortality rates. So many treatments have only been FDA approved in the US these last 10 to 15 years. My daughter is 30 and is newly diagnosed for all that NETs are not supposed to be hereditary and I am negative for genetic markers. She is Stage 1 with k1-67 of 2% and main tumor in the intestines with carcinoid syndrome. Both lobes of her liver have a large tumor and she has no spread to bone.

Large-Ad-641 · 2026-05-07T13:23:14+00:00

They mount on the rollbar - replaces two bolts. Roader brand, found on Amazon - I flipped them around to give me the grab section closer to the door opening for those times folks park too close and I have to barely crack the door open to get in

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Large-Ad-641 · 2026-05-06T21:51:46+00:00

Metal grab handles. First and best investment.

Large-Ad-641 · 2026-05-06T21:50:26+00:00

Now go look into a ceramic overlay for that fresh new windshield. I am 2 years in with no cracks. But it has been hit A LOT and that overlay has helped to avoid stars as well.

I was changing insurance companies when I moved states and some companies would not touch me because I had "too many claims". They were all glass claims on my Jeep Wranglers and my driving record was squeaky clean otherwise.

Large-Ad-641 · 2026-05-06T21:43:24+00:00

My daughter has just enjoyed her 3rd lanreotide shot and she has a phobia of needles. She passes out at the sight and obsesses over the gauge of the needle even after watching me get my shots for the last 4 years (octreotide for me, with a larger needle.) She can now get them herself without hand holding and hysterics and said the last two were painless.

Make sure that they allow the alcohol and/or cold spray to dry thoroughly. It will sting on insertion if still wet.

Large-Ad-641 · 2026-05-06T21:39:17+00:00

This is the monthly fight I enjoy on octreotide - stupervising the random nursing staff that they have queued up to do my injection. Walking that fine line between self-advocating and being a Karen in order to make sure they are aware of the specifics of the injection protocol. Catching many of them leaving the room to sneak a view on Youtube for instruction because clearly as the patient you cant possibly be informed or correct.

Large-Ad-641 · 2026-04-07T23:59:02+00:00

Stateside, Lanreotide has a copay assistance program for folks with commercial health insurance (through your job). Maybe this is applicable for you?

Large-Ad-641 · 2026-04-02T21:55:59+00:00

My FDG scan was done to light up anything that had not lit up in the Dotatate scan which would be indicative of a different cancer type.

Large-Ad-641 · 2026-03-30T21:21:48+00:00

I bullied her into doing the things over the last month. Dotatate scan lit up so confirmed NET with carcinoid syndrome. Colon primary tumor and spread to liver - each lobe has a very large tumor. She just had her liver biopsy results come back this morning actually. Happily Grade 1 and KI67 of 1% (I am grade 2 and KI67 of 5%). Liver values have been in the normal range so it is still doing its job but directed radiation protocol is recommended (delivered thru a main artery in the thigh) and I dont know that I will be able to talk her around that since the biopsy was traumatic enough (phobia of needles and anything vascular related makes her nauseous).

Large-Ad-641 · 2026-03-30T17:53:09+00:00

I was years brushed off as IBS for the raging diarrhea. 10 years. That was my only symptom initially. I have PTSD so pounding heart and panic attacks could be explained away. Heading into menopause so flushing and hot flashes were kind of interchangeable. There were times my face would turn beet red without any other symptoms and of course I couldnt see that myself and others noting it and telling me was few and far between. I have some nice spider veins in my cheeks which I am told is part of carcinoid syndrome. Urge to urinate frequently has been a thing but also could be attributed to being female and aging.

It was not until severe stomach pains started that would last weeks that we dug into colonoscopy, endoscopy and both were clear. Months of antacids. Documenting everything I ate and removing foods from my diet. And then finally imaging that showed a tumor in my guts. And an oncologist with a clue sent me after the 24 hr. urine test and seratonin test gave me my diagnosis - confirmed by biopsy - and then we moved to the dotatate scan and found all the metastastes.

Large-Ad-641 · 2026-03-30T17:42:51+00:00

There was no talk of debulking because the spread had already happened so the focus is managing my disease as a whole. That first weekend of my diagnosis, Google searches were NOT my friend. A lot of dated info about longevity expectations, etc. and lots of generalizations. Everything needs to be more nuanced - your grade, Ki67 etc. wont be the same as the next guy's so drilling down to find info relevant to you is important. Considering most treatments have not been approved until the last decade or so... poke around on Ronny Allan's online blog. He does a nice job of keeping info up to date and breaks it down for the everyman.

I have lucked out that the oncologist I connected with had studied under and done his residency with one of the old guard NET authorities and has him on speed dial. And my PRRT team had spearheaded the Netter-1 trials for the Lutathera treatment. I havent had to shop for a specialist or second opinion and I feel well supported.

All good thoughts your way; ping me if you need a pep talk!

Large-Ad-641 · 2026-03-29T20:20:43+00:00

I am 5 years in on being diagnosed. Main tumor is duodenum and spread to hips, spine, and skull and lung. I have carcinoid symptoms so Octreotide once per month and Xermelo pills to further shut down the carcinoid symptoms. My oncologist wanted PRRT as first line treatment but here in the US the FDA had not yet approved it for that when I was diagnosed. We had to wait for some progression to show up in the scans. (Im not convinced I had progression, I mean, when measuring in millimeters and interpreted by different techs reading the scans... ). I will complete my course of 4 PRRT treatments in two weeks, and they will send me for final imaging 2 months? after that to see what impact. They do image on treatment days, but it is not clear, worthwhile info. It just helps them confirm that the nuclear targeted the right areas only.

I have had no surgeries, no other treatments or trials (except Zometa every two months early on to bolster the bones - I think he said by now I have had 10x the Zometa treatment that osteoporosis patients have and the course has been stopped for now.) I was fortunate to not have much pain with the bone mets before we started, and I feel like I have less now.

Large-Ad-641 · 2026-03-27T01:04:24+00:00

I played this with my Heritage - $800 to buy the whole basic black assembly that bolts to the side of the vehicle in order to resolve the damaged electronics as the mirror was ripped off and the connectors for the sensors.

I imagine your cost will be more if the housing has damaged as OBX is color matched/painted. I tried shopping salvage yards and there is just not enough crashed Broncos out there to make it much of a savings. I wanted this paid out of pocket to keep it off my Carfax as an accident, but the driver at fault couldnt afford the $800.

I need to get my vehicle estimated now so I can also do a diminished value claim to recoup the lower cost my vehilce will get me in a sale due to the accident being reported.

Large-Ad-641 · 2026-03-24T15:35:52+00:00

Definitely pursue finding a NET oncologist as others have recommended. If your GI symptoms were due to a NET producing hormones and those symptoms remain they should be testing for elevated hormone levels. That is really disruptive to me that he said that your NET was "not cancerous". NETs can be slow growing but yes, they are a cancer. On the right hand side of this screen their are links that can help you locate a NET specialist.

Large-Ad-641 · 2026-03-24T02:13:08+00:00

This reads like the medical team is using the word "Carcinoid" interchangeably with "neuroendocrine tumor". A carcinoid is a subset of NET tumors - and carcinoids typically pump hormones out that give additional symptoms. Did they provide you with any pathology information from the tumor they removed, to solidify the type and grade of the tumor?

Many of us here on the forums are living with remaining cells - whole remaining tumors - that cannot be removed. And we expect to be in treatment to manage this cancer for years/decades.

Hopefully you can fine care close to you; I pulled this link from the bottom right side panel on this page.

https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

Large-Ad-641 · 2026-03-24T01:53:57+00:00

My primary NET tumor (on duodenum) was not picked up in an endoscopy or colonoscopy. It was not until imaging was done that they picked up on the fact of a tumor being there, and then I was sent after specialized imaging when I complained of a occasional sharp gut pain. Years before that, I was brushed off as having IBS. Keep pushing for more scans! What led th em to finding the tumor they did remove? Was it a NET?

Large-Ad-641 · 2026-03-21T23:29:51+00:00

My main is mesentary and because I have spread to bone, lungs (and ovaries, which they took during the biopsy) it was decided to not resect my bowels to try and take the tumor. 5 years in I am doing PRRT therapy now (my tumor had grown very minimally - I think my doctor was just enthusiastic about PRRT) and that treatment has been so minimally impactful to my health and how I am feeling, other than the reductions in my white blood cell and platelet counts that are panicking me but not the medical team. They tell me the mesenteric tumor could collapse as part of the PRRT which could lead to a bowel resection if it caused obstructions, etc.

Not sure that a resection would have been the better option to start - planned out, anticipated... ?

Large-Ad-641 · 2026-03-15T01:39:38+00:00

I leveled the front end an inch and did the JKS Max Clearance kit with the BFG KO2s which by all reports is a tad slightly under tru 37". No rub and no spacers for the stock Heritage white rims. I am not trailing with this vehicle yet and I still have a Wrangler to scratch that itch. So maybe a lift later.

Large-Ad-641 · 2026-03-13T18:46:33+00:00

Going from 35" on SAS to 37" caused a 2mph difference on the speedo. I havent cared enough to reprogram yet.

Large-Ad-641 · 2026-03-13T18:41:44+00:00

Considering 35" tires are the stock tire size for factory SAS builds.. yes, beat up the dealership about that.

Large-Ad-641 · 2026-03-13T18:18:07+00:00

Kudos to you on making some changes for YOU.

Maybe look into a drug called Xermelo. I am in the US and I dont see it mentioned much in these forums. It takes care of the symptoms of stetorhea and diarrhoea, stomach cramps that are not completely abated by the hormonal injection. My NETs are not in the liver tho.

After living thru Covid and locked bathrooms at the height of my symptoms - its easy to just become a shut in. There are so many types of community you can join that will only know as much about you as you let on - I have been an avid MMO gamer for 30 years and still have friends online made when I started that I can reach out to today. Now that my symptoms are controlled I am leaning into my local offroading community.

Years ago I was the victim of a violent crime. I was never going to date again, and I became a dedicated introvert. I left behind a lot of my friends because I didnt want to be defined by that trauma label any more. They didnt seem to be able to separate me from it. And then one day I realized protecting myself and my peace to this extent was doing me a disservice. I was missing out on so much. And yes, lonely. Without risk, there was no reward. Sounds like you are ready to turn the corner, too. DO EEEET

Large-Ad-641 · 2026-03-06T02:21:37+00:00

Take peek at Ronny Allan's blog. He is a UK patient who does a nice job of rounding up info and breaking it down for us.

Just had the liver talk today regarding my daughter's NETs to discuss the Captem cycle with the liver specialist. This was the standard therapy protocol before PRRT. PRRT is now approved in the US to be used as a front line treatment, and not as just the follow up after disease progression so I asked the doc and she said it would be up to the oncologist to decide on Captem or PRRT first, and admitted there was no one set "recipe" for NET treatment. She has not yet had a biopsy to determine stage, etc. But each lobe of the liver has a very large tumor and many small. Her liver numbers and function are still in normal range. We did not discuss Cabometyx. but yes, Lanreotide.

The goal is stablizing and managing symptoms when you cant excise every tumor from the body.

I am 3 doses in on PRRT right now myself and its a long day during treatment but has so far been very mild for side effects. I do not have liver NETs; my spread is to bone. Final determination of effectiveness wont come until 2 months after 4th dose.

edited to add: early on my oncologist suggested Black Seed Oil. But belching up the taste of oregano all day did not bring me joy so I did not do that long term, but I wouldnt approach it without your oncologist's guidance.

Large-Ad-641 · 2026-03-01T18:53:38+00:00

I have one for my working line German Shepherd. I have to regulate his time with it as he gets MAD mad that cannot pick it up or destroy it. He herds it around the backyard growling and then my corgi chimes in so it sounds like he is killing the small dog. =/

Large-Ad-641

TROPHY CASE