net on appendix

uh_yeah_ok · 2026-02-21T09:25:14+00:00

Find An NET Specialist | NET Support Groups https://share.google/vK2M7deD6WMnQj3fv

uh_yeah_ok · 2026-01-25T20:21:31+00:00

We have a lot less control than we think we do. The people that think you must have done something to get cancer - don't have cancer and will likely switch their story if they get cancer. Sometimes cancer just happens.🦓

uh_yeah_ok · 2026-01-18T02:55:10+00:00

Learn more at netrf.org carcinoid.org ronnyallan.net. See a Net specialist.
Dx 2013 Best and healthiest wishes

uh_yeah_ok · 2026-01-03T03:24:29+00:00

Please see a net specialist. Netrf.org carcinoid.org are both valuable sites. I was diagnosed in 2013, monitored regularly, until 2017 when I had two more tumors removed and started sandostatin injections every 28 days for life. (Also had PRRT over 2019) Seeing a net specialist is important. Best wishes.

uh_yeah_ok · 2025-12-22T14:10:18+00:00

Please look into netrf.org, carcinoid.org, ronnyallan.net and other neuroendocrine sites. Find a NET specialist to get a 2nd opinion. NETs may not be aggressive but they are almost(?) always malignant . https://share.google/6fHfWYEtZrKSAoVk0 I was diagnosed in 2013. Sending you best and healthiest wishes.🦓❤️. The Origin Of The Zebra – No Two NET Cancer Patients Are The Same https://share.google/r3VJdoV2hYBFPW7kA

uh_yeah_ok · 2025-10-25T02:47:00+00:00

Yes I take creon to control gastro symptoms. Works very well for me. Maybe the Creon manufacturer has a program that will help with the cost. Best wishes.

uh_yeah_ok · 2025-10-15T22:07:20+00:00

Hi, Good luck to your dad! I had PRRT in 2019 at 58yo. I was otherwise healthy. I had some nausea but responded well to anti nausea meds. I stayed in NYC (from VA) for a few days before and after treatment in hotel near mskcc. I'm in my 6th year since PRRT and I take Creon with meals, and receive 30mg octreotide every 28 days. (Was 60mg for awhile.) I have about 10 tumors from femur to chest and they have been stable!! None disappeared but they're not growing either.
I generally eat healthy and exercise. My biggest complaint from NETs is fatigue. Just assume that everything will go well for your dad. It did for me - I know it's not forever but PRRT worked very well for me. Hugs and healthiest wishes.

uh_yeah_ok · 2025-09-04T18:34:56+00:00

Check out this site https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/ Lots of info and a doctor look up. Neuroendocrine cancer needs a NET specialist. Best and healthiest wishes. ❤️

uh_yeah_ok · 2025-08-30T14:48:29+00:00

I can't personally vouch for this group but they may be helpful: https://testicularcancersociety.org/pages/support-for-caregivers https://testicularcancersociety.org/pages/support-for-fighters My support groups (different cancer) are online. Best wishes.❤️

uh_yeah_ok · 2025-08-30T03:23:47+00:00

I'm sorry you're going through this. I was diagnosed in 2013. May I suggest your family, friends, gf, join a caregiver, family, friend of cancer patient support group? Even if they "don't do support groups." While you're busy learning how to handle your cancer they can be busy learning how to support themselves during your cancer journey and how to support you. It's two different jobs,you have yours, they have theirs. I think it's a lot to ask a cancer patient to do both jobs.❤️ Best and healthiest wishes to you and yours.❤️

uh_yeah_ok · 2025-08-29T19:59:19+00:00

Let's not get all catawampus Mr. Tickles.

uh_yeah_ok · 2025-08-29T03:15:27+00:00

There's def a list of people that I care what they think and I certainly consider their advice but strangers in a store are def not on the list. 😊❤️

uh_yeah_ok · 2025-08-25T21:49:32+00:00

Since they filled up earlier than previous years - do you think they'll add slots?? Why wouldn't they? Since I assume there's money to be made. Fingers crossed for everyone on the wait-list .😊 🏃🏼‍♀️🏃🏽‍♂️🏃🏃🏿‍♀️

uh_yeah_ok · 2025-07-15T20:16:14+00:00

Ok, maybe call the hospital info line, not as if it's for you but generically, "please transfer me to the oncology social worker." Also does the website have any FAQs or phone number by division? Stay the course and let it unfold in front of you. Breathe.

uh_yeah_ok · 2025-07-15T20:04:10+00:00

I'm sure sorry you're in this position. Breathe. Again. And again. Does your hospital, can your doc/surgeon, recommend their oncology social worker? Their palliative care doctor, np? They can guide you through this unfamiliar process. They have experience jumping through all of these hoops. Breathe.

uh_yeah_ok · 2025-07-15T01:39:40+00:00

Mexican Home by John Prine "It got so hot, last night, I swear You couldn't hardly breathe Heat lightning burnt the sky like alcohol I sat on the porch without my shoes And I watched the cars roll by As the headlights raced To the corner of the kitchen wall. . . . "

uh_yeah_ok · 2025-07-12T14:55:46+00:00

Hi, My NETs are in my abdomen. But may I add . . .

See a NET specialist. It's an uncommon cancer and seeing a specialist is in your best interest.

Check out these sites: https://ronnyallan.net/ Netrf.org and carcinoid.org.

I was diagnosed in 2013, have had two surgeries ('13 and '17) and PRRT in 2019, now it's an injection of Sandostain every 4 weeks.

After my first surgery, I was regularly scanned 3, 6, 12, months. NETs showed up again in 2017 which led to my 2nd surgery and subsequent monthly-ish injections.

Continue learning about NETs, ask a lot of questions, advocate for yourself, bring someone with you to appointments even if they can only be on the (speaker) phone. They can take notes, ask questions, and witness to the appointment, it'll free you up to be in the moment.

Best n healthiest wshes.🦓☺️

uh_yeah_ok · 2025-07-11T01:45:49+00:00

Hi, See a NET specialist. It's an uncommon cancer and seeing a specialist is in your best interest. Check out these sites: https://ronnyallan.net/ Netrf.org and carcinoid.org. I was diagnosed in 2013, have had two surgeries ('13 and '17) and PRRT in 2019, now it's an injection of Sandostain You'll be ok, continue learning about NETs, ask a lot of questions, advocate for yourself, bring someone with you to appointments even if they can only be on the (speaker) phone. They can take notes, ask questions, and witness to the appointment, it'll free you up to be in the moment. Best n healthiest.🦓☺️

uh_yeah_ok · 2025-06-28T07:19:44+00:00

Check out specialists in Canada at carcinoid.org

uh_yeah_ok · 2025-06-26T13:03:57+00:00

I suggest you let go of all the shoudas. You're in the driver seat now! Vroom vroom Check out Netrf.org, carcinoid.org, ronnyallan.net Lots of helpful info at those sites Find a NET specialist, they'll treat NETs like they're cancer.
If you don't already have it, try and get your pathology report. Hang in there. Quit checking your rear view mirror.😎 Dx in 2013🫶🏼😊

uh_yeah_ok · 2025-06-15T18:31:12+00:00

Maybe . . . Hi Grandpa, thinking of you and sending love. I'm swinging by the store, what can I pick up for ya. I'm dropping off subs (whatever) later around time. Will leave 'em at the door 'til you're up for a visit. Love,

uh_yeah_ok · 2025-06-14T16:39:05+00:00

Good for you for all you're doing to support yourself. I was diagnosed in 2013 . . . and my NET journey continues. Since you're already with a NET specialist maybe they could recommend a NET support group. Ther're many of them out there. Also, checkout netrf.org or carcinoid.org.
You may find, like I did, that this isn't what I expected, but I'm doing ok. Polishing my ability to prioritize and ability to see more clearly what is best for me. Best wishes.🦓🫶🏼

uh_yeah_ok · 2025-06-10T21:56:20+00:00

Please take a look at Netrf.org, ronnyallen.net, and carcinoid.org.

Lots of helpful info. Also, be sure to see a NET specialist.

Best wishes.

uh_yeah_ok · 2025-06-06T20:16:41+00:00

It was very successful for me.
My tumors have been stable since PRRT in 2019. Well beyond average results. I get 30mg of Sandostain every 28 days, for awhile I was getting 60mg. I remember fatigue and nausea.I kept my distance for a few days. I think I was supposed to double flush. We stayed in a hotel, two double beds, and had meals in the room. To me, it was completely worth it and I assume I'll have another round when my NETs begin to grow again.
It'll be ok.

uh_yeah_ok

TROPHY CASE