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Some Carcinoid Healthcare FAQs (or opinions) ***
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*** Special note: Please remember that the information posted here is not a substitute for working with a qualified physician on your care.
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The contents of this page were written by
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Linda Silversmith and Larry Chinnery
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Questions 3 & 9 were derived from materials
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written by Dr. Eugene Woltering with his permission
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Permission to deep link into the Carcinoid Cancer Foundation was given by the
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Carcinoid Cancer Foundation
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1.
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Q. How can I be proactive for my regular medical care?
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A. Keep a notebook in which you place copies of your doctors’ notes, test results, scan results, etc., and also a list of your current medications and a summary of your health history. Carry your notebook with you to appointments. Track the long-term trends of your test results.
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2.
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Q. How can I make sure hospital staff pays attention to any special instructions that I
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bring.
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A. Make copies of any medical information you particularly want to share during hospital procedures on brightly colored paper to make it more noticeable.
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3.
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Q. What precautions do I need to tell my dentist about?
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A. Here is what Dr. Eugene Woltering has said on the Yahoo and/or ACOR carcinoid e-group(s):
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- Simple dental work -- like cleaning and fillings -- doesn't usually require extensive pre-procedure intervention. The patient may wish to use a single 100-500 microgram subcutaneous dose of octreotide one hour before the planned dental procedure. The choice of dose should be made based on the presence of symptoms and their intensity.
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- In general, the use of epinephrine in local anesthetics should be avoided since epinephrine can trigger a crisis. Please ask your dental care provider to use Xylocaine "plain"(without epinephrine).
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4.
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Q. How can I carry emergency information about carcinoid cancer with me?
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A. You can get a pendant or bracelet, special watch, or thumb-size USB (computer) drive (light weight) on which medical information can be written (see ...
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Make sure the item is comfortable for you and easy to put on or fasten (esp. watch out for awkward bracelet fasteners).
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MedicAlert is a frequently mentioned source of pendants and bracelets and more. See ...
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You can search the internet for “medical alert jewelry” to find other sources.
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5.
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Q. What kind of basic information should I include on my pendant, bracelet, watch, or
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thumb driver?
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A. Depending on capacity, include your neuroendocrine tumor information and brief cautions, such as “No epi” (No epinephrine except in dire emergencies) and/or “Use Sandostatin during surgery”.
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6.
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Q. What additional details can I include if I use a USB drive with its larger capacity?
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A. You can include medical records, medication lists, health power of attorney (or The Five Wishes), descriptions of any conditions (such as what is carcinoid syndrome and what is a carcinoid crisis), information on what to avoid (such as epinephrine), information on special procedures to follow for surgery, and specific medical articles.
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7.
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Q. Where can I find the consensus report on using sandostatin for carcinoid and
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related neuroendocrine tumors?
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A. A copy of the consensus report that was published in the June 2004 Annals of Oncology is available (in .pdf format) through the Carcinoid Cancer Foundation at ...
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Click above documant to access
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Also, check the NAAPNET publications section when available at ...
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... to see if paper reprints are available for you to order.
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8.
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Q. What does the consensus report say about special preparations before, during, and
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after surgery?
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A. See the section called How should octreotide be administered during invasive procedures in Consensus report on the use of somatostatin analogs for the management ofneuroendocrine tumors of the gastroenteropancreatic system - K. Öberg*, L. Kvols, M. Caplin, G. Delle Fave, W. de Herder, G. Rindi, P. Ruszniewski, E.A. Woltering & B. Wiedenmann Annals of Oncology 15: 966-973, 2004 , available at the Carcinoid Cancer Foundation website ...
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9.
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Q. Are there alternative procedures that can prepare patient with carcinoid or certain
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other neuroendocrine tumors for surgery?
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A. The following information was provided on 1/31/05 by Dr. Eugene Woltering on the yahoo and/or ACOR carcinoid e-group(s). This is a procedure that he uses.
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Special note: This applies to all invasive procedures. These are only suggestions. Please confer with your healthcare provider before undergoing any invasive procedure. Proper planning can help ensure your safety.
Caution: Even though the patient does not exhibit symptoms of carcinoid syndrome, a crisis can occur. These can be unexpected events- even in previously asymptomatic patients.
Actions you can take: Tell your physician or dental provider that you might experience a crisis and that you have printed out a copy of the crisis managing procedure for their use if this occurs.
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