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Posts (13)

Mar 30, 2017 · The role of Tumor Marker Labs in Neuroendocrine Tumors (NETs)

I am scheduled for my first Gallium-68 today (another Pancreastatin test came back high and symptoms increasing). Hoping they find actual tumors. If not, my doc still plans to start me on Lanreotide next week. Aetna is being helpful as ever (NOT!) in trying to deny the preauth for the scan since Gallium plus PET scan doesn’t make sense to their protocols. This is such a frustrating disease!

Mar 4, 2017 · Panel Discussion on NETs/Carcinoids in Neuroendocrine Tumors (NETs)

Curious what the rest of you thought about this webinar? I learned a LOT and was surprised to find that my doctor was actually one of the panelist! (Gene Woltering) I’m even more excited about the newer Galium 68 scan, and that they confirmed some of what you all said about starting treatment to address symptoms in case where tumor hasn’t yet shown up on scans. In case you missed the live panel, you can watch the recording here: https://streaming.biocom.arizona.edu/event/?id=27103&play=1&format=hd

Feb 15, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

Sorry to ask for more specifics, but when you say right sided abdominal pain, is it in the upper quadrant (like under/behind the upper ribs), like the gallbladder/liver area? or more in the side/stomach area? I’m asking, because my upper right quadrant pain is one of the severe symptoms that we still aren’t sure is related or not. I’ve had many gallbladder scans, including two HIDA scans and the only thing they found was a higher than usual ejection fraction rate (mine runs from 82-89% whereas normal is closer to 35-65%), so that rate might explain the pain, but nothing conclusive. Definitely not gallstones.

Feb 14, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually these symptoms that prompted me to get MANY tests that ultimately found my first tumor in my Ilium colon. I was having SEVERE watery diarrhea. I had always had IBS my entire life, but this was different. All blood and fecal tests and scans negative, so demanded the colonoscopy where they luckily found the little guy hiding. Carcinoid syndrome is different for everyone. Right now, I’m not having so much of the watery diarrhea, but am having severe flushing episodes where my chest and face/ears turn red and I have dry heat (no sweating). Foods and emotions mainly trigger it for me, and I had a very bad scare at dental office few weeks ago where they gave me novacaine with Epinephrine in it. It sent my blood pressure through the roof, very red flushing and literally thought I was having a heart attack. This is known as Carcinoid Crisis, which I was NOT aware of until speaking with my doctor last week. Turns out Epinephrine is VERY bad for Carcinoid patients as it has contraindications to usual patients. Say NO EPI when docs ask what drugs you are allergic to!

Feb 14, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

@heidilynn4 I am in a similar situation, with only surgery so far and fearful other small tumors are being missed as I’m having Carcinoid syndrome and recent tumor markers came back positive but all scans are negative. I live in Texas but my doc in Kenner, Louisiana specializes in Carcinoid and has just began doing the Gallium 68. It’s hard to get scheduled due to low availability of the machine, so I’m not getting that scan until end of march at earliest. It was this group here who gave me that knowledge of the new scan, which is supposed to be better at detecting smaller tumors. Waiting to find more is the worse feeling. I would rather find it and address it head on! Hang in there! I suppose if they are too small to be found, then they are too small to be deadly, so that is a positive hope to hold on to.

Feb 1, 2017 · The role of Tumor Marker Labs in Neuroendocrine Tumors (NETs)

@wordnoid , thank you SO much! This is extremely helpful! I’ve been reading on the Gallium-68 and do think I will push for it. Was also wondering if they ever do trial of the meds to see if it helps, so glad to hear some do and that it helped you. I will be following up asap!

Jan 27, 2017 · The role of Tumor Marker Labs in Neuroendocrine Tumors (NETs)

It’s been 5 years since my Carcinoid was removed from my colon (Ilium). At that time, they found it had also spread to 2 of the 19 lymph nodes. My only symptoms then was severe watery diarrhea and occasional flushing. About 9 months ago, I started having frequent flushing and some diarrhea. The flushing has gotten very bad (multiple episodes a day) and my fatigue is severe last 3 months. All of my scans are normal. Tumor markers go up a little, but had been still within normal limits (other than occasional very minor high result for Chromogranin-A due to GERD PPI meds) until this last draw. This time, my Chromogranin-A was very high at 1410 and my Pancreastatin was high at 155. My local oncologist said could be an anomaly with the lab, but it seems too odd that 2 are so high, especially with my symptoms. My other oncologist said that often these tumor markers show up way before anything reveals itself on scans, so it is a wait and see game. Has anyone else experienced this? It’s so emotionally draining. Any recommendations on how to get through this without over reacting would be much appreciated. My tumor was classified as “Well-differentiated” with pathologic stage of: T2 N1 M0. it surprised all of my docs that it spread even though low grad and well-differentiated, which is why I worry something is being missed.

Jan 25, 2017 · Treatment for chronic epstein barr in Infectious Diseases

Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven’t started it yet due to other GI issues, but I’m planning to try soon. It’s all natural supplements, so I’m comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.

Chronic Epstein Barr Virus Infection:
– This is a reactivation of an old EBV viral infection and is not contagious.
– Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.

– Vitamin C is a cofactor in the viral immune system – can take as much as 900-1000 mg once-twice daily.

– Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily

– N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily

NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.

– To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html – can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.

– Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.

@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson