NET symptoms despite follow-up lab work ok

Posted by pippa05 @pippa05, Jul 3, 2023

Has anyone experienced NET symptoms ie diarrhea, morning vomiting, nausea, headaches while lab work is all within normal range? I had net in ileum diagnosed 8/2021 which was removed by endoscopy. My lab work was fine and CT scan fine a week prior to finding NET. Every 6 mos my oncologist says "your lab work is fine" to which I reply "I wish I felt as good as my lab results" and his response is "see you in 6 mos." I had my one year endoscopy in 2022, which was fine and this year's is scheduled in Sept. I know I am lucky when I read what all of you are suffering thru. My company is allowing me to work from home because I am too sick to commute, I need immediate access to bathroom. I am not complaining, but I am curious as to whether or not anyone is experiencing the same thing? I take anti anxiety medicine because my anxiety has GI side effects, my primary doctor just increased the dosage. I've seen an assortment of doctors to determine if anything other than NET is going on, my nutrition is very good but symptoms are getting worse.
I keep all of you in my prayers, God bless.

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

tinerobison | @tinerobison | Dec 13, 2023

In reply to @lindabees "Thorvardur Halfdanarson is at Mayo Rochester and is one of the top specialists in the country." + (show)

We were hoping see him instead saw Dr. vege, now we’re discouraged we don’t want to go back there!

lindabees | @lindabees | Dec 13, 2023

In reply to @tinerobison "We were hoping see him instead saw Dr. vege, now we’re discouraged we don’t want to..." + (show)

Dr Thor used to be in Phoenix Mayo. He left shortly before we started going there. I understand your hesitancy, but he’s truly one of the best, if you were ever to reconsider. You’ve got an excellent resource and you owe it to yourself to get the possible care available to you. We’ve seen some of the top net specialists in the country over the last 15 years, LA, Stanford, San Francisco and now Mayo Phoenix. The Mayo system is very impressive and we’re really happy with the coordination of care.

Turkey | @tomrennie | Dec 14, 2023

In reply to @tinerobison "We were hoping see him instead saw Dr. vege, now we’re discouraged we don’t want to..." + (show)

Can you sign up for a video conference with Dr. Thor?

kjstein | @kjstein | Dec 14, 2023

In reply to @terlato "I totally know how he and you feel. At least you are there to confirm it...." + (show)

Have you considered Mayo in Phoenix? There is a terrific NET specialist there (Dr. Sonbol) and linked into the whole Mayo Net team. I commute there for my NET scans, care plan any specialized treatments not available locally ( which has been excellent), and coordinate the Mayo Net expertise and leadership with a local oncologist for routine care locally. It all works and is so worth the 7 hour drive!

lindabees | @lindabees | Dec 15, 2023

In reply to @tomrennie "Can you sign up for a video conference with Dr. Thor?" + (show)

I don’t know the answer to that

Turkey | @tomrennie | Dec 15, 2023

In reply to @lindabees "I don’t know the answer to that" + (show)

Dr. Sonbol and his team saved my life. So, I am biased. By the time that I finally got to him, I was in pretty bad shape. Looking back, I didn't really realize it. I was on CAPTEM for 12 months and now just the Cap part for three months. I have put on 50 pounds after losing 120. My primary in my pancreas was 8x6cm. It is now 3x2cm. My liver lesions, too many to count, are practically gone. I am in maintenance mode now. I live an hour away from Mayo Phoenix. I usually drive there in the morning for my bloodwork and scans, then drive home. My wife and I will have a video meeting with Dr. Sonbol, or a member of his team, later that afternoon to review the results and plan our next treatment steps. It took a little while to work out the logistics, but this is now working for all of us. Here is the best part of Dr. Sonbol and his team: We trust them. They are great people that happen to be amazing medical professionals. They are NET experts, so we don't have to be. I can just be a patient. I do what they tell me to do. I can find examples on line to contradict everything that my care team tells me. I make it a choice not to. I am not a doctor nor a medical professional. They are. I can just be a patient.

lindabees | @lindabees | Dec 15, 2023

In reply to @tomrennie "Dr. Sonbol and his team saved my life. So, I am biased. By the time that..." + (show)

My husband also sees Dr. Sonbal and we couldn't agree more! He was also on CapTem for 14 months with very good results and was just taken off the temodar; now just on maintenance with the cap. I'm curious - have you had a scan yet after being on just capecitabine? We were wondering how well that works on its own. I'm so glad you've done well!

pippa05 | @pippa05 | Dec 15, 2023

I am so happy for you, you have no idea how encouraging it is to hear from a patient that has good results and an incredible medical team. My Dana Farber oncologist also treats neuroendcrine patients. He encourages me to continue my research using Mayo Clinic resources as well as others - I'm not second guessing him, but it enables me to understand what is going on with this cancer and enables me to ask some relevant questions during our appointments. He has said right from the beginning this is a treatable cancer with many varied options if my cancer spreads. Yes some of these treatments are brutal, but in the field of cancer, there are always new treatments & medicines. God bless your medical team, and God bless you for what you are enduring. There is always hope.

terlato | @terlato | Dec 15, 2023

In reply to @kjstein "Have you considered Mayo in Phoenix? There is a terrific NET specialist there (Dr. Sonbol) and..." + (show)

I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I was told they don’t take Medicare at all and do not take cash paying patients. So you have to have a great insurance they can use for all consultations and test. I wish they would post that on their site!

kjstein | @kjstein | Dec 15, 2023

In reply to @terlato "I tried getting an appointment with the Mayo Clinic. They don’t take my Medicare plan. I..." + (show)

Sorry to hear about your experience. I know Mayo is not included in some (maybe many) advantage plan networks but they absolutely do take Medicare. All my costs have been covered by Medicare and my traditional supplemental medicare plan. Insurers need to be more honest about how few specialty providers are included in their advantage plans!