New NET in liver and small intestine

Posted by djchambers @djchambers, Oct 19 2:24pm

‘Im a 74 yr old woman.
A NET tumor in my small intestine was removed about 18 months ago.
This month a CT found two new masses. One at site of previous surgery and a second in liver.
Liver biopsy confirms grade 3, well differentiated NET.
I’m still reeling.
Last week I had a regular PET scan (mistakenly ordered instead of PET for NET. Dr’s office now wants me to repeat PET with correct radioactive tracer this week.
I’m concerned about another PET so soon.
I consulted with Mayo in 2024 before my surgery in Louisville KY. All drs agreed on surgery as best strategy.
I have many questions:
1) Is it possible to have Mayo look at my test results and offer treatment input?
2) Is another PET so close in time to previous PET and CT a good idea and necessary?
3) My oncologist says medication is probable next step. What are likely meds and what do they cost? Also, does anyone have input on side effects and likely results from various meds? I’m on Medicare and med supp plan F. It’s open enrollment. Is there one or more prescription plans that are better at covering the costs of meds. I’ve heard they are expensive. Are some treatments covered by Medicare and Medicare supplements?
4) What about cutting off blood supply to tumor on liver? I’ve read about ablation. Anyone has that?
5) I still feel pretty good but thought there was something wrong due to deep fatigue. Last time I was extremely anemic. This time my hemoglobin is very good and blood work so far normal. Is that common?
Thanks you all!
Dorothy

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Turkey, Volunteer Mentor | @tomrennie | Oct 27 9:47am

In reply to @djchambers "@dbamos1945 Thanks so much!" + (show)

@djchambers How are things going?

djchambers | @djchambers | Oct 27 10:43am

In reply to @tomrennie "@djchambers How are things going?" + (show)

@tomrennie
I’m at Mayo. I’ll see the oncologist here tomorrow.
The test results so far do not look great to me but I’ll know more after I see the dr. I’ll update then.
Thanks for checking in .

Turkey, Volunteer Mentor | @tomrennie | Oct 27 11:20am

In reply to @djchambers "@tomrennie I’m at Mayo. I’ll see the oncologist here tomorrow. The test results so far do..." + (show)

@djchambers OK. Good luck with everything.

djchambers | @djchambers | Oct 28 9:26pm

In reply to @tomrennie "@djchambers How are things going?" + (show)

@tomrennie
I saw Dr. Hobday today. He’s very encouraging about treatment possibilities. He thinks I likely should start with 2 chemo pills. They may shrink tumors. If that is the case and I can tolerate possible side effects it will be a good plan. But there are other possibilities as well. He also ran some labs and wants my biopsy specimen further tested. Definitely worth coming to Mayo.
Thanks you all for support!!!!

Turkey, Volunteer Mentor | @tomrennie | Oct 29 7:55am

In reply to @djchambers "@tomrennie I saw Dr. Hobday today. He’s very encouraging about treatment possibilities. He thinks I likely..." + (show)

@djchambers It sounds like a plan of attack is in place. That sounds great. Do you know what chemo pills he is recommending?

tjstaufr | @tjstaufr | Nov 2 6:17pm

I have stage 4 with primary in Duednhm and went through liver ablation treatment last November. By March, tumor was still growing. Have now started PRRT therapy and have had 2 treatments so far. Fingers crossed

Turkey, Volunteer Mentor | @tomrennie | Nov 3 8:50am

In reply to @tjstaufr "I have stage 4 with primary in Duednhm and went through liver ablation treatment last November...." + (show)

@tjstaufr How are you handling the PRRT so far?

tjstaufr | @tjstaufr | Nov 3 6:45pm

In reply to @tomrennie "@tjstaufr How are you handling the PRRT so far?" + (show)

@tomrennie doing okay. Main issue is near exhaustion at end of day. I could tell a difference between round 1 & 2. Hoping this doesn't get worse after round 3.

Turkey, Volunteer Mentor | @tomrennie | Nov 4 9:09am

In reply to @tjstaufr "@tomrennie doing okay. Main issue is near exhaustion at end of day. I could tell a..." + (show)

@tjstaufr Allow yourself the opportunity to rest. It helps the body recover. Do you schedule extra time for rest and recovery?

djchambers | @djchambers | Nov 7 12:19pm

In reply to @tomrennie "@tjstaufr How are you handling the PRRT so far?" + (show)

@tomrennie
After seeing Dr. Hobday at the Mayo Clinic he recommended I take two chemo meds instead of the PRRT treatment.

I think this was because of what the pet scans and liver biopsy had shown.

These drugs are capitatabine and temozolomide.

I’ve seen my oncologist Dr Doug Nelson in the Norton system in Louisville, Kentucky, who concurred with Dr. Hobday..

Dr Nelson then sent this info to the Norton specialty pharmacy which is supposed to be coordinating my getting me these medications.

I’m supposed to start taking the two chemo meds next week.

I have a prescription plan under Medicare called Wellcare.

It seems Wellcare does not really care about me.

I had a disturbing call from the Wellcare representative yesterday who claimed neither of these drugs are covered.

My Nortons doctor’s office had informed me that these are both available in generic form and are almost always covered by insurance companies.

But the Wellcare representative with whom I spent well over an hour on the phone, claim these medications that I will take at home should be covered by Medicare part B.

She also said I can start an expedited appeal process.

That involve dher asking me multiple times the same questions (I had no answers to:
such as who is a prescribing physician from the Norton specialty pharmacy.
And what dosage would I be taking. And how did I do when I took this drug before.
And then she asked me the same questions at least five or 10 more times in the course of the conversation. She was polite, but did not seem to have any idea what she was talking about. Or to understood the facts I had told her. Very frustrating and disturbing.