Carcinoid Digest Extracts: 7 Apr – 14 Sep 2017

NOTE: The Carcinoid Digest extracts provided below are listed below not by topic but by date (oldest first) and email threads are separated by “******************************”.  Related email threads will have the same email subject and within each email thread the more recent email(s) will be at the top of the thread.   I’ve taken the liberty to edit out some of the email text (i.e., email footers) not pertinent to the topic – sometimes represented where I’ve inserted “…”.  I have not made any edits to the email writer’s content but have enabled URL links so you can just click on it to check out the listed sit.



Date: Fri, 7 Apr 2017 10:56:10 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: some references

some resources from cURE TODAY:

For distress – esp. when newly diagnosed:

by a p-nets (panreati neuroendocrine tumor) patient: lessons learned…
Date: Mon, 8 May 2017 13:36:10 -0400
From: Rachael Harrigan <sisel@ROCKETMAIL.COM>
Subject: Cancer Concentrations

[Note: Link no longer active.  Here’s a site I found which has similar info:]

Thought this was interesting. It shows where cancer is concentrated in the US.

I think you can kayak that entire route.

Date: Wed, 10 May 2017 17:00:56 -0400
From: Ozzie Karim <gulzar746@GMAIL.COM>
Subject: Re: interesting drug discontinuation

This is the correct report:
The decision to discontinue Sandostatin 200mcg and 1000mcg is not due to manufacturing, product quality, safety, or efficacy concerns, according to the Company. Sandostatin is still available in 50mcg, 100mcg, and 500mcg strength solutions for intravenous (IV) or subcutaneous (SC) injection. A long-acting version, Sandostatin LAR Depot, is also available as 10mg, 20mg, and 30mg strength suspensions for intramuscular (IM) injection after dilution.
Date: Fri, 12 May 2017 13:54:38 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: reference on whether there really or more NETs or just better diagnoses

This ref. is about the incidence, prevalence, and survival rates for neuroendocrine tumors — main point is that the “increase” in NETs is really due to earlier and better diagnoses: (free to join

Linda s
Date: Sun, 14 May 2017 02:29:02 -0400
From: Bill Claxton <wmclaxton@GMAIL.COM>
Subject: a new standard of medical ethics

This week in Singapore, the Appeals Court decided to set a new standard for medical ethics, involving a Neuroendocrine Cancer patient named Tan Sri Clement Hii, a businessman from nearby Malaysia who was wrongly diagnosed as having pancreatic neuroendocrine tumors (NETs). Essentially, the Court decided that physicians are obliged to take into consideration the questions raised by a knowledgeable patient and respond with more complete and detailed information than they might otherwise provide. Read more here –
Date: Sat, 20 May 2017 13:21:17 -0400
From: Dina Bolshazy <westie01@VERIZON.NET>
Subject: Re: interesting drug discontinuation

I have been using “Sandostatin (Octreotide Acetate)” from Novartis since 2001. I never went to the LAR. I used it subq for 6 yrs and have been using a pump with the Sando, since 2007. I am very happy using it and have NEVER experienced any of the problems that some of the Generic versions have.

I am will be very sad if this is true. What will Hospitals use in an emergency situation with patients .. not just Carcinoid or Neuroendocrine patients, but other emergent patients… use Generic?

Dina (in Chesapeake, Va)

In today’s newsletter for patients by FDA (the Food and Drug Administration) the section on drugs being discontinued includes “octreotide acetate (Sandostatin)” — I am guessing this is the daily shot version made by Novartis (the company name was given in the report) – and the probable reason would be that almost everyone is using the cheaper generic versions made by other companies.

Are there some folks still using the Novartis brand? I understand it could be less irritating.

Linda SDate: Tue, 23 May 2017 06:30:01 -0600
From: “Merlynn D. Densley” <mddensley@COMCAST.NET>
Subject: June 2-6, 2017 American Society of Clinical Oncology (ASCO) Conference in Chicago, IL


The 53rd Annual Meeting of the American Society of Clinical Oncology (ASCO) will be held June 2-6, 2017 at McCormick Place in Chicago, IL. This conference will host over 30,000 attendees and include the presentation of 2,500 abstracts, with a surprising number of them covering NET-related topics.

Several of these abstracts present data on the benefits of lanreotide and peptide radio-labelled receptor target therapy (PRRT). Please see the following abstract which was just released: “Final progression free survival (PFS) analyses for lanreotide autogel/depot 120 mg in metastatic neuroendocrine tumors (NETs): The CLARINET extension study.” at

At the bottom of that abstract is a listing of “Other Abstracts in this Sub-Category:”, which includes a total of 24 different NET-related abstracts that are going to be presented at this conference. You can read each of these abstracts by just clicking on the title.

I am very impressed at the amount of NET-related research that is going on and very hopeful that it will soon translate to improved treatments for those in our community!

Merlynn D. Densley
UT NET Cancer Sup. Gp. Ldr.
Date: Wed, 24 May 2017 01:09:35 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Genetic Testing

Z tubes and lab corp required
Do not let them send blood to Cambridge labs
Must go to isi via lab corp

Sent from my iPhone
Eugene A Woltering MD

> On May 23, 2017, at 7:49 PM, Amanda Arnett <00000086d724dc06-dmarc-request@LISTSERV.ACOR.ORG> wrote:
> What tests should I get to be screened for carcinoid if my mom has it? And my insurance won’t cover the Z tubes bc I have to use a different lab. Is the 24hr urine test sufficient? And how frequently should I get screened? Yearly?
> Thanks,
> Amanda

From: “Cy Ball” <0000030dde955761-dmarc-request@LISTSERV.ACOR.ORG>
To: “The Carcinoid Cancer Online Support Group” <CARCINOID@LISTSERV.ACOR.ORG>
Sent: Sunday, June 4, 2017 11:49:00 AM
Subject: [CARCINOID] the GA-68 scan rocks!

I had the GA-68 scan last week that finally (after 6 years!) identified where my primary tumor is. It is in the pancreas and that was a big surprise I have always been told I am mid-gut. Also there are tumors in my bone in a few places and it has spread to other intestinal areas. But it’s not that bad!

I wrote this blog about it and the blog is pretty popular. 

I also wrote a blog about the scan and my experience with it. This is extremely popular among the neuroendocrine cancer online support groups and I have more web views by far than anything I have ever written. Here it is: 

I hope it helps someone here.

Thanks all,

Cy Ball

pNET with liver mets, bone mets, intestinal mets.

Date: Wed, 21 Jun 2017 04:20:23 -0400
Subject: Ongoing clinical trial in lung neuroendocrine tumors (Lung NET)

This clinical study is being conducted to evaluate an investigative treatment for Lung Neuroendocrine Tumors (Lung NETs). You may have heard of this condition being called Lung Carcinoid Tumors, Bronchial NETs, or Pulmonary NETs.

Find out more:
Date: Wed, 21 Jun 2017 13:09:07 -0700
From: Katherine Arbanasin <akathya@EARTHLINK.NET>
Subject: Re: Ongoing clinical trial in lung neuroendocrine tumors (Lung NET)

Hi Linda, and All,

I looked at this and it seems that it could be phase III of Ipsen’s SPINET study which explores lanreotide as a possible treatment for lung carcinoid:

“Efficacy and Safety of Lanreotide Autogel/ Depot 120 mg vs. Placebo in Subjects With Lung Neuroendocrine Tumors (SPINET)”

On a couple of other lists the question of whether it could be for those with MEN 1 too has come up. If that is the trial in question, it doesn’t seem to say anything specifically about MEN 1, but one of the exclusion criteria seems to be having neuroendocrine tumors that are not of lung origin. That might indirectly be a statement that those with MEN 1 are excluded.

High grade neuroendocrine tumors and having previously had other treatments as listed (any significant prior somatostatin analogue therapy, PRRT, or more than two rounds of chemo, targetted therapy or interferon) seem to be other exclusion criteria.

Kathy A.
atypical lung carcinoid
Northern California
Date: Wed, 21 Jun 2017 21:44:19 +0000
From: C Franz <cltfranz@GMAIL.COM>
Subject: Lung CT

Does anyone know if nodules in the lung can be followed properly with CT
with no contrast? Ive had contrast for 7 years and the last CT with
contrast showed slight mediastinal node enlargement and about 5 odd shaped
nodules, one of which had shrank abit but become denser. Now 6 months
latwr they want to do CT with no contrast. Are they going to be able to
see what they need to see??
Thanks, Cate


Date: Wed, 21 Jun 2017 14:59:25 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: Re: Lung CT

have you asked for an explanation of the change in procedure?

From: “C Franz” <cltfranz@GMAIL.COM>
To: “The Carcinoid Cancer Online Support Group” <CARCINOID@LISTSERV.ACOR.ORG>
Sent: Wednesday, June 21, 2017 5:44:19 PM
Subject: [CARCINOID] Lung CT

Does anyone know if nodules in the lung can be followed properly with CT with no contrast? Ive had contrast for 7 years and the last CT with contrast showed slight mediastinal node enlargement and about 5 odd shaped nodules, one of which had shrank abit but become denser. Now 6 months latwr they want to do CT with no contrast. Are they going to be able to see what they need to see??
Thanks, Cate


Date: Wed, 21 Jun 2017 18:00:30 -0400
From: arbitratormurphy <arbitratormurphy@GMAIL.COM>
Subject: Re: Lung CT

Cate, Most of the scientific/medical papers on lung nets that I’ve seen have have spoken of CT scans without contrast. I believe they see things well enough without the contrast. Murf Sent via the Samsung Galaxy S®6 active, an AT&T 4G LTE smartphone ——– Original message ——–From: C Franz <cltfranz@GMAIL.COM> Date: 6/21/17 5:44 PM (GMT-05:00) To: CARCINOID@LISTSERV.ACOR.ORG Subject: [CARCINOID] Lung CT Does anyone know if nodules in the lung can be followed properly with CT with no contrast? Ive had contrast for 7 years and the last CT with contrast showed slight mediastinal node enlargement and about 5 odd shaped nodules, one of which had shrank abit but become denser. Now 6 months latwr they want to do CT with no contrast. Are they going to be able to see what they need to see?? Thanks, Cate –
Date: Mon, 3 Jul 2017 08:32:25 -0700
From: azad Karim <gulzar746@GMAIL.COM>
Subject: Re: Fwd: [CARCINOID] Med: Sando Sub Q Help now WHAT??? Dr. Woltering – Anyone

I found this in
You might contact him for advise.

If you are a carcinoid/neuroendocrine cancer patient and you have had your
insurance denied, you can reach out to Michael Farris for guidance at
Date: Tue, 4 Jul 2017 07:44:29 -0600
From: “Merlynn D. Densley” <mddensley@COMCAST.NET>
Subject: YouTube videos of the June 24, 2017 LACNETS Conference are now available

There were (19) different presentations given at the June 24, 2017 Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) conference on many different NET topics. All of these presentations are now available on YouTube. I recommend reviewing the list of presentations and selecting those that you might find particularly interesting.
I have found both the content and presentation quality of these videos to be excellent.

I have not yet watched all of these presentations, but I have viewed the following two, both of which I found very interesting.

2017 LA NET Conf-07 PRRT: Hermann (13:43 Min) from June 24, 2017 Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS)

2017 LA NET CONF-10 Morning Q&A: ALL (34:48 Min) from June 24, 2017 Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS)

Merlynn D. Densley
Utah NET Cancer Sup. Gp. Ldr.
Date: Tue, 4 Jul 2017 23:51:19 -0500
From: Kathy Peoples <wyhtak@AOL.COM>
Subject: Re: COME ON LINDA

Yes, and syndrome seems to vary from person to person. I self inject when excessive diarrhea starts, when brain fog happens, when blood pressure starts acting up or down, not always the same symptom will trigger my self injection. Sometimes I cannot go 2 weeks with no boost…sometimes I need a boost every couple of hours. Emotion and stress make things act up. Sometimes necessary then too. If someone is not experiencing any of these issue they probably don’t need sub qu but It sure serves as a safety net when things go haywire. Kathy in Houston

Sent from my iPad

On Jul 4, 2017, at 11:19 PM, Michael Sharrock <mikesharrock01@GMAIL.COM> wrote:
> Don’t some people use a regular program of sub-cu octreotide acetate solution to try to inhibit tumor progression? Not everyone can utilize or tolerate the monthly “Depot” type of shots, either Sandostatin LAR or Somatuline (lanreotide).
>> On Tue, Jul 4, 2017 at 10:07 PM, Nancy Stone <> wrote:
>> I still don’t understand what sub q rescue shots are for when the patient doesn’t have syndrome. Linda has yet to explain this to me, although I have asked the question a few times now.
>> Nancy in NYC


Date: Wed, 5 Jul 2017 11:33:56 +0000
From: DD Freeman <beardf@HOTMAIL.COM>
Subject: SUB Q

I never ever even considered taking the SUBQ all these years because I saw no reason too .I was FINE on my 28 day LAR INJECTION ! {now every 21 days ]

The Last Year things have me off the main road of life at times and yes my “Good Doc” and I have discussed use of the SUBQ ,Its still not in me to think I need it just yet..I have diarrhea and at times it gets rough ..enough so I now will never go to work if I have a hint of diarrhea or tummy distress because the last time They didn’t want me going home early like I wanted too ! ugh!

I just had my LAR June 29th things are fine as to the Diarrhea Chronicles ,[I rarely have Flushing if at all] and I walked 3 miles yesterday morning at 6 AM ..

In my book I just don’t wish to change anything I have been doing including same amount of pain meds UNTIL I REALLY THINK I NEED TOO! I DONT THINK SO YET !

my way may not rap with others and their ways ,but for me emotionally a step up in more of anything medical is a step down in my emotional strength which is very strong at this time.

just saying

Bear Ohio LUCK going walking about now !
Date: Wed, 5 Jul 2017 14:27:53 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: some recommendations from a cancer patient — Wash. Post article

While the author is dealing with a different cancer, not a neuroendocrine tumor, I think her major points about what to do are still highly relevant:

Linda S
former noid/net caregiver, patient advocate, co-list manager
Date: Thu, 27 Jul 2017 09:48:46 -0400
From: Charles Murphy <arbitratormurphy@GMAIL.COM>
Subject: For Karyn – the lungnoid…


Your doctors haven’t been giving you good information about your

First of all there is a variant of carcinoid that affects some Lungnoids. I
believe it has been called Atypical Carcinoid Syndrome. That doesn’t mean
you have atypical (faster moving) tumors. It means you have a syndrome that
varies from the normal bowel based forms of syndrome. Your tumors may not
be producing serotonin and could be producing something else that causes
your symptoms including flushing.(Think histamine, vasopressin, ACTH,
anti-diuretic hormones and may then maybe serotonin.) Lots of things cause
flushing and other weird lungnoid symptoms. And remember that just like
your liver your lungs can and do help process things your tumors produce
and once you exceed the capacity of your lungs (and perhaps your liver
plays in here too) you will begin to have symptoms like flushing and even
in some cases diarrhea. What confounds the diagnostic process – and lab
testing efforts – is that these are all normal hormones and peptides and
the lungs and liver are processing a lot of them out of the bloodstream.
Unless the doctors somehow figure out what is happening they don’t know
that your lab results are wonky. And even then they have to try to figure
in the effects of your bronchial inhalers, anti-histamines and other
medications which can skew your lab results.

My beloved spice had problems like yours – for years. And despite the fact
that she had what her doctors thought she had asthma or at times bronchitis
or severe allergies and problems with chemical smells and scents it turned
out that she also had a 3 cm bronchial mass(which eventually put her into
heart failure and the heart failure led to the discovery of her {ta-da}
lung tumor). So all this is to say doctors that tell you lungnoids don’t
cause syndromes are ill informed. (Not their fault perhaps – that’s what
they were told in medical school.)

Your capacity for exercise may be limited by your medications – or by your
surgery. But either way you should take a go-slow approach and continue to
exercise. But let the dog walk – don’t carry it. And start out slow and
stay slow. Do it but do very slowly. And remember noids react/respond to
stress and exertion. (It happened to my wife twice. One week she had
tachycardia which resulted from walking and she ended up with a 5 day
hospitalization. The next week she had brachycardia and an overnight
hospitalization. It was exercise that kicked her off kilter.

You may also have a heart issue that hasn’t been identified yet. If you
have an undiscovered or untreated arrhythmia you could be put in danger as
a result of the unanticipated combination of these issues. (Read that to
mean you need to see a cardiologist to get checked out.’noid and NET
patients should have a cardiologist anyway. (Nets and noids are known to
cause heart valve issues. )

And yes, Sandostatin will help control some of these issues. But
Sandostatin isn’t a panacea. Your dosages need to be adequate to the
chemical challenge your body faces. And that requires monitoring –
something lots of MDs aren’t smart enough to realize. The real specialists
will but you gotta get to a real specialist to get that class of
treatment. And it sounds like the well meaning folks you’re dealing with
right now aren’t up to speed. But like Jan Jackson says – do the break-in
Octreotide shots first.

My advise is to get to someone like (doctors) Eric Liu Lowell Anthony, Gene
Woltering, Tom O’Dorisio. With this disease you’re either paying your money
to go see them or you’re taking the chance of paying for a lower standard
of care. (Pay the money – or take your chances.)

Noid/NET patients are indeed Zebras. But lungnoid patients are like red
headed, left handed, green eyed Zebras. And so are the doctors who know how
to treat them.

Date: Thu, 3 Aug 2017 11:10:36 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: MIBG scan – what says about it

MIBG(scintiscan) (Iodine 131 metaiodobenzylguanidine)
October 17, 2015
An iodine radioisotope (MIBG, iodine-131-meta-iodobenzylguanidine) is another type of a radionuclear scan using a substance called MIBG. MIBG is very similar to the hormone dopamine or the hormone adrenaline, which are secreted by many of the neuroendocrine tumors.MIBG is particularly useful in localization of the primary tumors or metastatic lesions in pheochromocytoma and related tumors of the autonomic nervous syetem such as paraganglioma, and can also be used to find a rarer type of tumor like medullary carcinoma of the thyroid. How good is the MIBG? It has a very high specificity. How does MIBG scan compare with OctreoScan in carcinoid patients? For most carcinoid tumors MIBG is not as good but it is used in some patients where OctreoScan is unavailable or is negative.

—– Original Message —–
From: “Nancy Calhoun” <Nancy@CLAYCALHOUN.COM>
To: “The Carcinoid Cancer Online Support Group” <CARCINOID@LISTSERV.ACOR.ORG>
Sent: Thursday, August 3, 2017 1:54:44 PM
Subject: [CARCINOID] MIBG scan

Has anybody had the MIBG scan? Is anyone using it for treatment or therapy? Thank you for your input as I try to decide if this something I should try. It is difficult to get much information on it either from my Doctors office or on the internet.
Date: Mon, 7 Aug 2017 16:43:15 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: webinar series on carcinoid syndrome

Perhaps I missed any previous announcements — is everyone aware of this series that is being promoted by the Carcinoid Cancer Foundation? Two talks already were held on July 30 and as per below, the next one is on Aug. 23. + CCF is planning an additional website just for carcinoid syndrome (go to and search the term carcinoid syndrome)

New Carcinoid Syndrome Web Series: Education, Testing and Nutrition
July 30, 2017

[ ]

The neuroendocrine tumor (NET) community is invited to attend a new national webinar series on carcinoid syndrome , beginning on Wednesday, August 23, 2017 with a presentation by Eric [ http://https// ] H. Liu, MD, neuroendocrine surgeon at the Rocky Mountain Cancer…[more details at]

Linda S

former noid/net caregiver/patient advocate
Date: Thu, 10 Aug 2017 14:12:44 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: study for lung noids

I saw a reminder today in the NET Research Foundation e-newsletter about this study:

Lanreotide was approved in the US by FDA for gastrointestinal neuroendocrine tumors. This study is to see how well LAN works on lung NETs.
Date: Thu, 10 Aug 2017 23:09:05 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Insurance approval for GA-68 Netspot scan

Blue cross has turned me down 100% of the time
I have wasted hours on trying to educate them
Peer to peer discussions have failed miserably
Looking to change my personal insurance based on their response

Sent from my iPhone
Eugene A Woltering MD

> On Aug 10, 2017, at 5:32 PM, Elaine LaToza <e2006latoza@COMCAST.NET> wrote:
> Well, I tried to get the newly FDA-approved GA-68 (commercial name is Netspot) scan and failed. My local oncologist ordered it and my medical insurance denied it, saying ‘a PET scan for breast cancer must follow another scan with unclear results’. They obviously got the type of cancer wrong and the scan sounded wrong, too, so I asked my oncologist to appeal it, but she said she didn’t want her staff spending the time on an appeal.
> So I went to my Carcinoid Expert doctor, who is directing my care. He ordered it, it was denied, and this time they said, “This test should be used to look for certain types of cancers and when certain conditions are met. Your doctor did not tell us that you are having this test for this purpose.” When I contacted my doctor, he said all Netspot scans are being denied and he did not want to spent any more of his staff’s time on appeals, since they were all being turned down.
> When I talked with my insurance company, they said a PET scan must be pre-authorized, but the “add-on code” to make it a GA-68 scan does not need pre-authorization. So they only look at it as a PET scan.
> How do we get insurance to start paying for the Netspot scan??
> Elaine
> near Seattle
Date: Wed, 16 Aug 2017 20:53:45 -0600
From: Gary Pack <garyinbaileyco@GMAIL.COM>
Subject: Clevland Clinic Paper on Flushing

Hi. This Clevland Clinic Paper on Flushing (June 2012) is one of the most
informative I have read. GaryP
Date: Thu, 17 Aug 2017 14:36:36 -0400
From: Jennifer Ziegenhirt <jsugrin@YAHOO.COM>
Subject: Re: Insurance approval for GA-68 Netspot scan (Success with CIGNA)

I had my Gallium scan (at UCSF) a few weeks ago.
It was summarily denied by my insurance and the medical assistant said my doc just wanted me to have the Octreo instead. I pushed back firmly, because I suspected a sneaky weasel was hiding that had not been found by Octreo. I asked them to specify that due to the higher level of sensitivity shown in the Gallium Scan Dr. was requesting approval because of inability to local source of issues.
Appeal was approved.

I have CIGNA insurance so if anyone else has the same and needs to use our approval to help their process I’m happy to share whatever info your Dr.’s office would want (names, dates, ??? ). And hopefully some of you folks with BCBS will help them see the light quickly.

Not only did we find the weasel the Gallium Scan found 2 MAJOR areas that had never shown up previously. One is a tiny bugger in the pancreas that was suspected but small enough it’s reasonable the Octreo did find it but I also have 2 tumors in the HEART, one about 1cm and the other 1.2 X 1.5CM (there is always that off chance it’s an aytypical and wasn’t there on my last Octreo but I’m 33 years in this game with hundreds of tumors and have never had an aytypical so I suspect it’s been there awhile).
Date: Fri, 18 Aug 2017 10:43:49 -0400
From: Susan Aronson <saronson2661@COMCAST.NET>
Subject: Insurance and Gallium 68 PET scan

Here are some thoughts for those seeking GA68 approval from their Insurance Company.

The guiding document for the claimant will be their Summary Plan Description ( SPD). This is a legally binding document which outlines critical terms and conditions of your coverage. Key terms to familiarize yourself with are the definition of medical necessity as well as the section on Exclusions.

When appealing a denial always reference your SPD and use the same language that is within your SPD.

Each Insurance Company has a system in place which outlines in very specific terms the clinical guidelines for determining medical necessity of any diagnostic procedure or treatment. You can locate this information on the internet in most cases. The information will help you formulate your appeal.

Make sure you supply the Insurance Company with the Medicare Code for GA-68. Supply them with this code even if you do not have Medicare because Insurance Companies will take that information into consideration.

If you work for a corporation and have a group insurance plan and have not had success with obtaining approval with the claim office of Ins Co. consider contacting your Human Resources department to ask for their assistance on your behalf. All Insurance Companies have a “contract exceptions department” where claim exceptions can be approved that are outside current contractual norms. It helps to have a company that will strongly advocate on your behalf.

If you have tried all the normal channels of appeal including peer to peer review by your physician and still have not gotten anywhere there are still avenues available you may want to consider. If you have a true insurance policy ( not self-funded coverage) you can contact your State Insurance Department. If you have coverage with an Employer via a self-funded or Administrative Service Contract you can contact the Department of Labor ( DOL) for assistance. All of that information should be shown in your SPD ( usually at the back of it) in the section on Appeals).

Additionally write letters to your state representatives and ask them to intervene on your behalf.

I am familiar with policies from AETNA as that is where I worked ( I’m retired). Their policies are listed on internet under Clinical Policy Bulletins on their web site.

In most instances for cancer related diagnoses AETNA considered the FDG-PET as medically necessary in very specific terms depending on the type of cancer for diagnoses, staging, or restaging. The guidelines for Gallium 68 PET scan will no doubt be similar. In almost all circumstances the “MONITORING” of tumor response during a course of therapy is not considered medically necessary ( exception is made for breast cancer). It is important when discussing appeals with Insurance Company to use the terms in ways they have defined. The use of PET scans will rarely be authorized when used as an initial scan for the purpose of diagnosis unless it can be proven to assist in avoiding an invasive diagnostic procedure.
If a tissue biopsy has already confirmed the diagnosis of the cancer then the Term ” Diagnosis” is no longer part of the argument. The key words are “staging” or “restaging”. PET scans would be considered medically necessary in those situations in which clinical management of patient would differ depending on STAGE of cancer and if the stage of cancer remains in doubt AFTER completion of standard diagnostic work-up ( includes conventional scans) or if it can be proven that the PET could replace conventional scans ( because conventional scan does not provide sufficient data to allow for clinical management of patient).

When discussing RESTAGING- this is typically defined as occurring after completion of treatment for the purpose of detecting residual disease or recurrence or extent of recurrence in those patients with symptoms or signs of recurrence. NOTE: PET for post treatment SURVEILLANCE is considered experimental and investigational. Surveillance means use of PET scan post treatment on a patient in the absence of any signs or symptoms of cancer progression or recurrence in order to predict/ detect progression.

I hope the above information may help us all to get coverage approval.
Date: Sun, 20 Aug 2017 19:57:10 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: better survivorship

Some of us get the e-newsletters of the Neuroendocrine Tumor Research Foundation.

One article in the mid-July newsletter has particularly good advice for improving how you live with cancer — as per
Date: Mon, 21 Aug 2017 19:18:13 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Antidepressants


Sent from my iPhone
Eugene A Woltering MD

> On Aug 21, 2017, at 12:57 PM, Amanda Arnett <00000086d724dc06-dmarc-request@LISTSERV.ACOR.ORG> wrote:
> I came across some information on serotonin syndrome and it can be caused from taking triptans (migraine meds) with selective serotonin reuptake inhibitors (Prozac, Zoloft). I’m not sure if there are precautions for carcinoid patients taking the Prozac or Zoloft or if there is no real concern. But something to ask about.
> Amanda
>> On Aug 21, 2017, at 12:22 PM, Terry Stegeman <000000ed361cc4d2-dmarc-request@LISTSERV.ACOR.ORG> wrote:
>> I have not posted in several years or been on the site. I do not know if there are any new changes/developments in regard to taking antidepressants with carcinoid. Are there certain ones that are better to use with a history of carcinoid? Thanks.
>> Terry
———- Forwarded message ———-
From: Robert Ramirez <>
Date: Mon, Aug 21, 2017 at 8:44 AM
Subject: RE: [CARCINOID]

*Please post I’m in too much pain to recall details of posting*
To: “Woltering, Eugene” <>, Michael Sharrock <>

This is confusing. Is there a diagnosis? Happy to see if there is a
diagnosis of carcinoid and we can develop a treatment plan.


*Robert Ramirez, DO, FACP*

Thoracic, neuroendocrine and general oncology

Ochsner Medical Center

Gayle & Tom Benson Cancer Center

1514 Jefferson Highway, New Orleans, LA 70121

504-842-3910 <(504)%20842-3910> phone *􀀀* 504-842-4533 <(504)%20842-4533>

Neuroendocrine Tumor Program

200 W. Esplanade, Ste 200, Kenner, LA 70065

504-464-8500 <(504)%20464-8500> phone *􀀀* 504-464-8525fax

www.ochsner.orgDate: Mon, 21 Aug 2017 14:12:47 -0700

From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: Antidepressants

the choice of antidepressants is an individual thing — and NO, you don’t have to worry about the selective serotonin reuptake inhibitor ones — but it can take a while to find the right one for you — usually it takes about 3 weeks to see if an antidepressant is working for you (this is true for folks without NETs as well as folks with Neuroendocrine tumors.

Linda S
former patient caregiver

From: “Amanda Arnett” <00000086d724dc06-dmarc-request@LISTSERV.ACOR.ORG>
To: “The Carcinoid Cancer Online Support Group” <CARCINOID@LISTSERV.ACOR.ORG>
Sent: Monday, August 21, 2017 12:57:00 PM
Subject: Re: [CARCINOID] Antidepressants

I came across some information on serotonin syndrome and it can be caused from taking triptans (migraine meds) with selective serotonin reuptake inhibitors (Prozac, Zoloft). I’m not sure if there are precautions for carcinoid patients taking the Prozac or Zoloft or if there is no real concern. But something to ask about.

Date: Mon, 21 Aug 2017 17:54:32 -0400
From: Beth Mcgivern <bethr.mcgivern@GMAIL.COM>
Subject: Re: Antidepressants

I’m not sure about the antidepressants and NETs but there is a relatively new test by a company called Genesight that involves taking a saliva sample and the results are a report that can narrow down the anti-depressants that might work for you based on your genetic profile. I believe it is covered by insurance. It was much more helpful and quick for my husband than trial and error with many anti-depressants. Ask your doctor to take a look at doing this if you don’t know what might work for you.
Date: Tue, 22 Aug 2017 00:34:03 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Antidepressants


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Eugene A Woltering MD

On Aug 21, 2017, at 8:32 PM, Betsy Gray <betsygray@GMAIL.COM<mailto:betsygray@GMAIL.COM>> wrote:

Very helpful info!

On Aug 21, 2017 7:54 PM, “Terry Stegeman” <<>> wrote:
Thank you for all the replies. This all came up recently in a discussion about antidepressants with my doctor. She is of the mind that you can’t take them if you have had carcinoid but way back when I was on the listserv before it seems like this was discussed and decided that they didn’t cross the blood brain barrier. Did I remember that right? Testing to see which one is right for you seems like the way to go.

Date: Wed, 23 Aug 2017 16:58:38 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Dr. W – asking for tests

Lanreotide drug level in plasma

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Eugene A Woltering MD

> On Aug 23, 2017, at 11:54 AM, Denise Rugato <denise@BOTHWELLCORP.COM> wrote:
> What is the name of the test I need to request to find out if I have the appropriate level of Lanreotide in my system? I was on Sandostatin for seven years and never had the level in my body tested. I’ve seen it discussed on here, but don’t have any idea what it’s called. Having my second NetSpot scan next week after six months on Lanreotide. Was supposed to get the shot on Monday, but was requested to hold off until after the scan.
> Thank you all!
Date: Sat, 2 Sep 2017 11:14:59 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: a second endpoint from the everolimus clinical trial

There’s a new paper out on this – and below is a brief summary. This looks at what is called a secondary endpoint of the clinical trial.

Linda S

This study of the prespecified secondary endpoint of RADIANT-4 reports data on health-related quality of life (HRQOL) in 302 patients treated with everolimus vs placebo for advanced, well-differentiated, nonfunctional neuroendocrine tumors of gastrointestinal or lung origin. Patients receiving everolimus exhibited similar median time to definitive deterioration compared with patients receiving placebo (11.27 vs 9.23 months; P = .31).
In addition to improvement in progression-free survival (previously reported), the patients receiving everolimus experienced equivalent HRQOL scores to those met by the participants on placebo, suggesting that everolimus improves progression-free survival while maintaining HRQOL.
– Neil Majithia, MD

In the phase 3 RADIANT-4 trial, everolimus increased progression-free survival compared with placebo in patients with advanced, progressive, non-functional, well-differentiated gastrointestinal or lung neuroendocrine tumours (NETs). We now report the health-related quality of life (HRQOL) secondary endpoint.
RADIANT-4 is a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial done in 97 centres in 25 countries worldwide. Adults (aged ≥18 years) were eligible for the study if they had pathologically confirmed, advanced (unresectable or metastatic), non-functional, well-differentiated (grade 1 or 2) NETs of lung or gastrointestinal origin. Patients were randomly allocated (2:1) using block randomisation (block size of three) by an interactive voice response system to receive oral everolimus (10 mg per day) or placebo, both with best supportive care, with stratification by tumour origin, WHO performance status, and previous somatostatin analogue treatment. HRQOL was assessed with the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire at baseline (visit 2, day 1), every 8 weeks (± 1 week) during the study for the first 12 months after randomisation, and every 12 weeks thereafter until study drug discontinuation. The primary endpoint, reported previously, was progression-free survival assessed by central review; HRQOL was a prespecified secondary endpoint. The prespecified secondary outcome measure was time to definitive deterioration (≥7 points) in FACT-G total score. Analyses were done on the full analysis set, consisting of all randomised patients, by intention to treat. Only data obtained while receiving the randomly allocated treatment were included in this analysis.

Between April 3, 2012, and Aug 23, 2013, 302 patients were enrolled; 205 were randomly allocated everolimus and 97 were assigned placebo. At baseline, 193 (94%) of 205 patients assigned everolimus and 95 (98%) of 97 allocated placebo had completed either fully or partly the FACT-G questionnaire; at week 48, 70 (83%) of 84 patients assigned everolimus and 22 (85%) of 26 allocated placebo completed FACT-G. Median time to definitive deterioration in FACT-G total score was 11·27 months (95% CI 9·27-19·35) with everolimus and 9·23 months (5·52-not estimable) with placebo (adjusted hazard ratio 0·81, 95% CI 0·55-1·21; log-rank p=0·31).

HRQOL was maintained for patients with advanced, non-functional, gastrointestinal or lung NETs, with no relevant differences noted between the everolimus and placebo groups. In view of the previous RADIANT-4 findings of longer progression-free survival with everolimus, our findings suggest that everolimus delays disease progression while preserving overall HRQOL, even with the usual toxic effects related to active targeted drug treatment for cancer.
Date: Fri, 8 Sep 2017 06:56:32 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Dr: Dr Woltering – blood work

Every three months
For midgut tumors
Use pancreastatin plasma 5 hiaa
Neurokinin a

Sent from my iPhone
Eugene A Woltering MD

> On Sep 8, 2017, at 1:08 AM, Vickie Arney <00000216cdaf0255-dmarc-request@LISTSERV.ACOR.ORG> wrote:
> How often should blood work be taken to monitor our cancer? Are there indicators in the blood work that you monitor?
Date: Fri, 8 Sep 2017 09:57:10 -0700
From: Katherine Arbanasin <akathya@EARTHLINK.NET>
Subject: Re: CAR-T cells and NETs?

There are different types of immunotherapy that under investigation to fight cancer.

I think that what Chip mentioned Dr. Kunz at Stanford was embarking on a couple of years ago and the work at Rutgers that Cate mentioned involve checkpoint inhibitor immunotherapy for NETs.

As I understand it, this type of immunotherapy is aimed at blocking specific molecules that can be present on the cancer cells that send a “Don’t kill me” signal to the immune system when it otherwise recognizes the cancer cells as foreign bodies to attack. The checkpoint inhibitor drugs are designed to bind to specific “Don’t kill me” signal molecules to allow the immune system killer cells to recognize what marks the cancer cells as foreign but not have the attack stopped or checked by the cancer cells “Don’t kill me” signals. See the video from a NETRF conference at Stanford in the link Chip provided:

In starting this thread, Jeff was asking about another type of immunotherapy under investigation for NETs: CAR T-cell immunotherapy. In that type of therapy, as I understand it, some of a patient’s T cells (immune system cells that attack what is foreign) are removed from the body and then modified to recognize something on the patient’s cancer cells to mark them specifically for attack. The modified T cells are then put back in the patient’s body to kill the cancer cells. The only investigation of CAR T-Cell immunotherapy for NETS that I’ve heard of or that I’ve seen anyone mention here is that which Jeff mentioned: Dr. Metz’s research in collaboration with Dr. Carl June at the University of Pennsylvania.

About a third of the way into in the NETRF conference video mentioned above, Stanford’s Dr. Fisher briefly mentions the CAR T-cell work at Penn. He indicates that sst-2 receptors on NETs cells is what the Penn researchers were potentially aiming for the T-cells to target. He also mentions a problem with a lot of cancer therapies — some normal cells in the body can also get harmed because they have what the cancer cells have that the therapy is targetting. For example, he mentioned that the kids with blood cancers who got cured with Dr. June’s CAR T-cell therapy have no B cells (a type of white blood cell) and that no one yet knows how that will play out in their lives.

Sst-2 receptors are present in some normal body tissue cells — like the pituitary. Potentially then CAR T-cell therapy aimed at killing cells with sst-2 receptors could damage not just the NET cancer cells but also normal tissue like the pituitary.

Have any of those who have had PRRT run into this issue with the pituitary? If so, have you had to go on hormone replacement therapy?

Anyway, perhaps we haven’t heard much about the CAR T-cells since the initial announcements because maybe they are just doing the rsearch and have nothing to announce yet. I worked in research at university teaching hospitals for a little while. It seems to me that it can take a lot of time, work, resources, etc. before news comes from something like this. Hopefully news of something that will help us will eventually come of it.

Kathy A.
atypical lung carcinoid, Northern California
Date: Sat, 9 Sep 2017 11:26:47 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Dr: Dr Woltering – blood work

Pancreatic polypeptide
If diarrhea


Sent from my iPhone
Eugene A Woltering MD

> On Sep 8, 2017, at 11:43 PM, Vickie Arney <00000216cdaf0255-dmarc-request@LISTSERV.ACOR.ORG> wrote:
> What about PNets with liver mets, what markers do you watch?
Date: Sat, 9 Sep 2017 20:07:12 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Dr: Dr Woltering – blood work

News flash
New book for docs
This is the American Joint Commission on Cancers staging manual
It is an excerpt from the staging book
These are completely new chapters
I chaired a group of about 20 docs who put this together
Write to isi and have them send one to your doc
This book is being produced and will be ready to send your doc in 6-8 weeks
Limited number of books available
Remember these books are for docs thus the limited numbers being produced

Sent from my iPhone
Eugene A Woltering MD
Date: Thu, 14 Sep 2017 19:20:52 -0700
From: Linda Silversmith <linsil@USERMAIL.COM>
Subject: a resource plus following up re immunotherapies

As many of you know, when the first approval of CAR T-cells was announced about a week ago, there was discussion on this egroup about applying the approach to NETs since a couple of the researchers involved had received a NETs (neuroendocrine tumors) research grant.

Here is a link to a newsletter that talks about the state of immunotherapy progress for NETs:

This is from the NET Research Foundation – the other major foundation active concerning carcinoid/NET tumors besides the Carcinoid Cancer Foundation.

Linda S
co-list-manager and former noid caregiver