Clinical Trial Recruiting Neuroendocrine Tumor Patients with Pheochromocytoma or Paraganglioma

Neuroendocrine tumor patients with malignant pheochromocytoma or paraganglioma are being sought for a multi-center clinical trial conducted by Molecular Insight Pharmaceuticals, Inc. In the New York area, one of the clinical trial sites is the Mount Sinai School of MedicineDr. Richard R.P. Warner, Medical Director of the Carcinoid Cancer Foundation, Professor of Medicine at Mount Sinai School of Medicine, and one of the country’s leading carcinoid cancer and neuroendocrine tumor specialists, is a co-investigator on the clinical trial.

The purpose of the clinical trial, which is evaluating Ultratrace lobenuane I 131 (also known as AzedraTM), is to determine if the drug reduces the amount of blood pressure medication being taken as a result of these rare cancers and secondarily, to determine such things as the “effectiveness of the study drug in treating the cancer, additional safety measures and to assess if the drug helps the quality of life and use of pain medication. All subjects will receive an imaging dose with scans followed by two therapy doses that are given 3 months apart.” Ultratrace lobenuane I 131 is a form of I 131 MIBG but with higher specific activity.

The primary objective of this Phase II study, expected to enroll 75 patients ages 12 and older, is to achieve a reduction and/or discontinuation of all blood pressure medications by at least 50% for a minimum of six months.  Patients will be evaluated for the effectiveness of the medication and safety during a 12-month period, then for survival for an additional 4 years.

Pheochromocytoma is a tumor of the adrenal gland that causes it to produce too much adrenaline. Pheochromocytomas are usually benign (noncancerous), but can also present as or develop into a malignancy. They can cause dangerously high blood pressure and other symptoms, including pounding headaches, heart palpitations, flushing of the face, nausea, and vomiting. Paragangliomas are rare neuroendocrine tumors that may develop at various body sites (including the head, neck, thorax and abdomen). About 97% are benign and cured by surgical removal; the remaining 3% are malignant because they are able to produce distant metastases.

To read more about the clinical trial, including eligibility, go to , study NCT00874614, or click here:

Print Friendly
  • VA Patient


    I’m a 49-yr old male , and reside in VA, USA. I have vagal (glomus tumour) and or paraganglioma. I had a Partial recection of mass @ my skull base in 2007, much post-operative complicatiions voice, headaches, cranial facial nerve pain, etc…undergoing serial MRI. No real solution, I’m a new grandfather and do not want to die.

    Can anyone help me, pls email 24/7

    Very Respectfully,


    • Hi Tim, We wanted to let you know there are carcinoid/neuroendocrine tumor specialists in Virginia and many states in the country. Here is a link to the Carcinoid Cancer Foundation’s website, where all of the specialists are listed state by state: There are also support groups in your area that are wonderful resources: Please do not hesitate to contact us at the Foundation, 888-722-3132, Tuesday through Thursday, 9 am to 5 pm, Eastern Time, if we can help you. Our thoughts are with you. The CCF Team

  • My 70 year old husband just had a 7″ neuroendocrine paraganglioma removed from the right side. It sat between all vital organs and was beginning to attach to the vena cava vein. Surgery is considered a success and we have been told that radiation and chemo are not needed (at this time) since this type does not respond well to this type of treatment. Mass was removed. There is 1 blood test which appeared on the low side of high and he is in the “watch and wait” arena. It seemed to be removed completely but blood veins/arteries (?) were feeding it. The surprise was it was on the outside of every organ. Can you give me more specific info in layman’s terms? Thank you!

    • Hi Michele,
      Thanks for contacting us regarding your husband’s surgery. We hope he has a speedy recovery and is feeling well. Is your husband seeing a doctor who specializes in NET cancer? These are the physicians who know the most about diagnosis, treatment and follow up for NET cancers. We’d be happy to help you find one if you give us a call at 888-722-3132, Eastern Time, and to answer your questions We’re here to help!.