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May 19 2014

Generous doctors help NET patients afford treatment

Daniel Parsons of Colorado Springs USA has pancreatic neuroendocrine cancer with extensive liver metastases.  He and his caregiver wife Susan have encountered many setbacks in their medical journey, but they recently have new hope after discovering that one of the top physicians treating neuroendocrine patients in the US works only 50 miles from their home.

Their new physician is Dr. Charles Nutting, an interventional radiologist specializing in performing minimally invasive image-guided procedures to treat liver cancer including neuroendocrine tumor metastases.  Dr Nutting practices at Radiology Imaging Associates (RIA) in Denver Colorada, USA.  How the Parsons’ were referred to Dr Nutting by a support group in their area, how they got in touch with Nutting via social media, and how they worked with him to accomodate their financial challenges is a very inspiring story.

Daniel was first diagnosed as having a pancreatic neuroendocrine primary tumor (pNET) in November of 2010.  Initially he was given a stent to open his bile duct, but after two failed stents, surgeons proposed a  pancreatic resection.  Daniel underwent a Whipple procedure in June of 2011, an expensive and invasive procedure which requires several weeks of recovery.

It was planned that Daniel would undergo a liver resection after recovering from the Whipple.  However, by the time follow up imaging was done in early 2012, it was determined that the metastatic liver lesions has progressed and involved both lobes.  Surgery was ruled out and Daniel was referred to an oncologist near home in Colorado Springs.  The oncologist recommended a wait-and-see approach, to be followed up with biologic treatments in the event of progression.

Daniel was started on Sunitinib (Sutent) in summer 2013, but there was continued disease progression in the liver.  So the oncologist switched regimens and started him on a course of Everolimus (Afinitor), again without success.  There seemed to be no benefit from these biologic therapies.

In April 2014, Daniel was referred to a local interventional radiologist (IR) for liver-directed therapy.  The IR specialist suggested trans-arterial radio-embolization using Yttrium 90 microspheres, also known as ‘Y90 embolization’.   Although not a specialist in pNETs, this physician had performed a few Y90 ebolization treatments, and he offered to try to get it authorized for coverage by the Parsons’  insurance.

It was while waiting for this authorization that Daniel’s wife Susan was contacted by Chris Nashville who is a member of the Facebook group Carcinoid Cancer Cafe, which Susan had been contacting to seek guidance from the patient community.  Chris noted that this emobolisation requires very specialised angio-graphic skills to assure the radioisotope is deposited in the right place, and recommended consulting Dr Nutting, describing him as one of the country’s best NET specialists performing inverventional radiology.  And he was literally in the Parson’s own backyard, practicing in nearby Denver.

Susan reached out to Dr. Nutting via Facebook and he replied right away, scheduling a consult to review Daniel’s case.  Dr Nutting said that he would be happy to perform a Y90 embolization and had done many such procedures for NETs cancer patients like Daniel.  This was good news indeed!

But Daniel’s insurance is Medicaid (which is the government insurance for Colorado).  Medicaid will cover the pre-treatment diagnostics, the hepatic embolisation and the hospitalisation costs, but not the Y90 beads which have an estimated cost of USD $16,000.  The material is expensive because it is specially engineered for biological use and contains Yttrium radioisotope.  The Parsons’ informed Dr Nutting that they could not afford this.

After a few exchanges, Dr Nutting informed Susan and Daniel that the manufacturer of the Y90 beads and the hospital had agreed to a reduced rate which they could pay via installments over the next two years.  This savings and the ability to pay make reasonable monthly payments was all the result of Dr Nutting’s lobbying on behalf of the Parsons, and his commitment to get them this potentially life-saving therapy.

In mid-May, Susan wrote back to Chris and the rest of the Facebook group to share the good news.  She said: “[thanks to Dr Nutting] Daniel will be able to move forward and have the Y-90 procedure as planned!  I cried for two hours at the amazing blessing that we have been given.”  This story demonstrates again how fortunate the NETs community is to have committed specialists like Dr Charles Nutting.  He’s a NET hero!

This article was submitted by CNETs Singapore.

daniel parsons