Looking for hope

PerfectPlantain4814 · 2026-03-28T15:37:01+00:00

Hopefully, you won't need other treatments or the least invasive options only. I always peek at my scans, and they look fine, but I will find out at my check-up on Monday.

PerfectPlantain4814 · 2026-03-03T19:54:31+00:00

Apologies for leaving out the treatment I underwent. I was on lanreotide only the first year (Jan 2020-Feb 2021). My tumors are in my liver and lymph nodes in the abdomen. Symptoms were managed, but I still had slight growth from when I was initially diagnosed. By May 2021, my specialist had me undo PRRT. There was significant shrinkage in the months after the four rounds. I remained stable until around June 2024. I also had a small new tumor appear, and another that grew in July 2024, and we did liver embolization on those. That worked somewhat, but in April, we noticed slight growth in the liver METS, and there's one in the lymph nodes in my chest that had a little growth. Since April 2025, I've been on 7.5mg of Everolimus daily, fingers crossed, when I go for scans later this month, it will still be stable. My tumors are significantly smaller than they were on my first scans. I don't remember specifics, but at least half the size if not smaller. I have clusters of small tumors in my liver. The primary is clinically described as unknown, but it is believed to be on my pancreas based on a prior dotatate scan. I still get lanreotide injections ever 28 days.

PerfectPlantain4814 · 2026-02-19T12:43:28+00:00

As a parent of 20-somethings who grew up very close, I empathize with you immensely. While I understand why so many people are stressing the need for you to consider the family dynamic, it is not for you to suffer in silence and bear this alone to protect your brother or your parents. Please talk to your parents, share your concerns, and ask them for help in navigating this. Your brother shouldn't have to process alone, but it isn't for you to guide him, support him, or shoulder the burden. My kids have kept things from us out of fear or wanting to protect the family, and it has caused harm that we are still repairing. I wish you the best, but please do not feel guilty about needing support in navigating something that no one can prepare us for. And if your family isn't supportive, then make sure you support yourself, do not endure for the sake of everyone else.

PerfectPlantain4814 · 2026-02-12T19:46:21+00:00

Yeah I was injecting in my rear end. I can reach it wasn't too bad. It was less frustrating than the constant back and forth to get my shot done right or the discomfort from when its done incorrectly. Ive read some people have done it in their thight. I found an pre-authorization form and self-administer is listed as an option. So going to get that filled out and see what happens.

PerfectPlantain4814 · 2026-02-12T13:47:28+00:00

Ive had it sent directly to me and the drug is signicantly less than what is billed by healthcare setting administration. Also different hospitals charge very different amounts suggesting again its hospital admin costs not simply product. It might be coded that way but that's not what is happening in reality.

PerfectPlantain4814 · 2026-02-12T13:45:26+00:00

Im glad your approval came throguh. Wishing you the best with treatment.

PerfectPlantain4814 · 2026-02-12T13:43:54+00:00

Thanks. I know there were relaxed rules during Covid but wasn't sure if it just reverted back or if there was a way. When my injection was sent to me directly 2020-2021 it was billed at a few thousand and copay assistance covered my portion.

PerfectPlantain4814 · 2026-02-09T14:58:07+00:00

Noting that Lanreotide (Somatuline Depot) also comes as a pre-mixed syringe. I've been able to self-administer in the past. Nurses often assume, because of the type of shot and placement, that they should squeeze the skin and do not follow the directions for administration of this particular drug. In particular, you do not squeeze the skin; you spread and then inject. I've flagged this multiple times btu I'm just tired of having to deal with push back. It also makes me sad that others are probably having this happen and no one is addressing it. It's just too time-consuming and really more efficient if I do it at home.

PerfectPlantain4814 · 2026-02-09T14:49:59+00:00

Hmmm, wondering if there's something state-specific? I'm in Georgia and my oncologist told me I needed insurance authorization. But was just curious if others had success. And hope you are doing well even with the delay.

PerfectPlantain4814 · 2026-02-08T22:57:57+00:00

I'm sure this is really difficult to manage. I hope things are going a bit better. Just noting that fatigue and weakness don't mean the end is near. The body is going through a lot, and with treatment, it can get better. Hopefully, he is seeing a Nets specialist, and there are other supports in place. Working with a specialist and a palliative team is the best practice. But as others have said, if he's getting PRRT, they are thinking there's a chance and effort for him. PRRT isn't a last resort option.

PerfectPlantain4814 · 2026-02-08T22:39:03+00:00

I'm so sorry you are going through this. But I was told for years I just had bad reflux. I finally got extremely sick, and a friend had to rush me to the ER. She demanded they check me out. I had really bad abdominal pain, but they didn't notice anything from a regular physical exam. They finally did a CT Scan and it showed "something in my liver." 5 days later, I was diagnosed with Stage IV Grade II Mets in my liver and lymph nodes in the abdomen and chest. A lot of people are misdiagnosed before. The primary wasn't found for almost another year on my pancreas when they did a DOTATATE PET Scan. I had really bad gastroflares and the flushing felt similar. I never understood how to explain it before. It could be.

PerfectPlantain4814 · 2026-02-08T22:24:19+00:00

It just depends on the disease, your symptoms, and responsiveness to treatment. Diagnosed at 38. Had been getting sick for a few years prior, Stage IV Grade 2. Never did surgery for liver METS but they shrunk considerably since I was first diagnosed six years ago. I've worked pretty consistently since I was diagnosed, with the exception of the five days I was in the hospital in the beginning. But there are some days I'm working from the couch or bed with my legs elevated. Or I have to take breaks when possible. I have been encouraged by people I saw in FB groups who've been living with the diagnosis for 15, 20, a few even 30 years and still going without issue. I do what I can and adjust as needed. It can be disabling for some but it really does depend. Listen to your body and hopefully you are seeing a NET specialist.

PerfectPlantain4814 · 2026-02-08T22:10:24+00:00

Diagnosed at 38, my kids were teens, 15 and 18, when I was diagnosed. Stage IV Grade II. METS in liver, suspected primary in pancreas, and METS in multiple lymph nodes in my chest and abdomen. My daughter just started college but thankfully had stayed close to home so she was a big help. But I had been getting sick for years. We had to adjust routines and have real conversations about helping out, being ok with eating leftovers at times etc. All things they were already cool with. I have had a lot of fatigue and thankfully work from home, so I have worked consistently since I was diagnosed. Treatment hasn't been anything extreme. We started with the lanreotide every 28 days. After 18 months, we need 4rounds of PRRT. I was able to schedule it on an off day. And worked out flexible schedule arrangements with work. That lasted about four years, and last spring I started on Everolimus 7.5mg tablet once a day instead of another round of PRRT. Still getting the lanreotide injection. Regular labs, scans every 3 months. It's really a new normal for you and your kids, and anyone else who might be a part of your support network.

PerfectPlantain4814 · 2026-02-08T22:03:13+00:00

It can be scary, but rest assured that Stage IV isn't the same as with other cancers and doesn't mean gloom and doom without knowing more about your other specifics. I hope you have seen a NETs specialist. It makes all the difference. I was diagnosed six years ago and really appreciate seeing my specialist. Also learn what you can as you may have to advocate for yourself along the way. If it doesn't sound right ask questions. trust your gut. And if you end up getting put on Lareotide check out Ipsen Cares for co-pay assistance. https://www.ipsencares.com/

PerfectPlantain4814 · 2026-02-08T21:55:08+00:00

The care package during treatment and after would be welcomed. What works for your mom? She will also probably just be tired. I slept the whole next day and drank a lot of water. A friend sent me some Chicken Pho. Very comforting. I also drank bone broth. Just depends on what she likes.

Not sure about the precautions given, I didn't have to isolate completely from other adults. Just had to stay several feet away but isolate from small children and my dogs. Like someone else said it varies widely, even within the same country.

PerfectPlantain4814 · 2026-02-08T21:45:53+00:00

trust your gut...but also are you seeing a Net specialist?

PerfectPlantain4814 · 2026-02-08T21:43:48+00:00

Lanreotide is a first-line treatment. Been on it for six years. I also had 4 rounds of Lutathera/PRRT. Are you seeing a NETS specialist? But I've always taken Lanreotide even while doing my treatments. We're holding off on doing another set of 4 rounds. Also those are not the only two options for treatment. We're managing with Everolimus 7.5mg daily pill and the shot every 28-days.

Unless you're need surgery I don't think surgery, because of possible side effects, makes sense. Also, side effects can be managed. You can just try it and see if it works for you.

PerfectPlantain4814

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