Today is Worldwide Carcinoid NET Cancer Awareness Day and in recognition of this, I would like to share how this horrid disease has affected my life and the life of my beloved wife – Jackie. I almost lost Jackie on July 5th, 2013, she was 47 years old. We were moved to a private room where the Oncologist told her there was nothing that could be done, they would make her comfortable and she would succumb to this. Jackie asked, “How long do I have?” The Oncologist answered, “Weeks, maybe a month.” We held each other and wept in that surreal moment. Then we called our families. Jackie was diagnosed with Carcinoid Cancer in 2009. A very rare neuro-endocrine cancer and we were told it was very slow growing. Her condition was monitored with a combination of blood markers and octreotide scans – the accepted method of scanning for Carcinoid. For a period of four years, the octreotide scans were always negative, yet her blood markers increased exponentially. Jackie received no treatments and had no other considerations, right up to the moment she was deemed terminal and inoperable. We did NOT give up and within 24 hours, we had appointments with the world-renowned expert Dr. Richard Warner and his surgical oncologist Dr. Michail Shafir at Mount Sinai Medical Center. We met with these Carcinoid specialists and Jackie was fast-tracked to surgery in less than 5 days. At the first appointment, Dr. Shafir stated, “This is NOT over.” These Specialists are amazing Doctors. They saved her life and continue to actively monitor her. So much has happened since then. It seems like a lifetime has gone by. Jackie had a successful surgery but her tumor could not be removed. She endured her recovery followed by six months of chemotherapy treatments and constant doctors’ appointments, tests and follow-ups. The past six months have been a well deserved break but treatments have resumed with a rise in her markers. Jackie started a new chemotherapy on October 26, 2014. If she is responsive, she will stay on this treatment indefinitely. Jackie has a chronic condition that will need treatment for the rest of her life. Jackie is in this situation because of 20 year old methodologies and outdated scans used, to follow and treat her very rare cancer. The key to Jackie’s future is the Gallium68 Dotatate scanner. This scanner has been used extensively in Europe and is now in clinical trials here in the United States. It has been proven to be highly effective, non-invasive, safe and 10 times more sensitive than Octreotide scans. The results from this new scanner are so impressive, the FDA is fast-tracking their approval. Jackie played a part in this, as she was selected for the National Institutes of Health clinical study of the Gallium68 Dotatate scanner. In July of 2014, just after the 1 year anniversary of being told she was terminal, she was in Bethesda MD at the NIH. The Gallium68 scan clearly showed disease in many places previously unknown. This scan will make all the difference for Jackie in the accurate measuring of the disease which is necessary for effectively treating the disease. The Gallium68 scan has also allowed her to become a candidate for the highly effective PRRT (Peptide Receptor Radionuclide Therapy) treatment. With her negative response to the Octeotide scan, she was previously not a candidate for this treatment. All Large academic medical centers, like Mount Sinai, are not-for-profit. Governmental subsidies, grants and the earnings from patient care help to cover operating costs. New procedures for rare diseases are never profitable and rarely pursued because the numbers of such patients are low in comparison to those with more common conditions. Support for such new initiatives must be generated by philanthropic or research grant sources. Mount Sinai Medical Center has finished the approval process for their Gallium68 Dotatate Scanning Center. They need to raise $250,000.00 to open the Center. My hope and intent is to collect a large portion of the money needed. My dream is to name the Center at Mount Sinai in honor of Jackie. I almost lost Jackie to Carcinoid Cancer. I would give my life for hers and I will do anything to help her see another day. Jeff Please note – your donation will bypass all typical avenues of fundraising. Your contribution should be made to “Mount Sinai Hospital” and sent directly to Dr. Richard Warner. Please include an additional note stating; - This contribution is in honor of Jacqueline H. Gregory for the Gallium68 scanner. - The entire amount of this contribution is to be used for that purpose with no percentage being taken for overhead or withheld for other institutional projects. Please mail contributions to; Richard R. P. Warner, M.D. Director Center for Carcinoid and Neuroendocrine Tumors Professor of Medicine 5 East 98th Street 11th Floor New York, NY 10029 How do I make a gift in honor of a friend or loved one? Tell us whom you wish to honor when you make your gift. If you would like us to notify the person(s) or their family of your gift, please provide us with the appropriate contact information. Please note that we do not disclose gift amounts when notifying the honoree or family members and friends of the person for which a gift has been made. What are the tax benefits of making a contribution? Both the Icahn School of Medicine at Mount Sinai and The Mount Sinai Hospital are exempt under section 501(c)(3) of the Internal Revenue Code. Any gift for which you do not receive goods or services is fully tax-deductible. Giving appreciated securities that you have owned for more than a year entitles you to capital gains tax savings, and selling depreciated securities entitles you to claim capital loss. Since the tax benefits of different types of gifts can vary, we urge you to consult your financial and legal advisors for specific tax information. Icahn School of Medicine at Mount Sinai’s Federal Identification Number is 13-6171197 and The Mount Sinai Hospital’s Federal Identification Number is 13-1624096.
Posted on: Tue, 11 Nov 2014 01:20:23 +0000
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