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Carcinoid FAQs

 

 

 

 Whoa!

 

Look at all that ...

Carcinoid FAQs

 

Some Carcinoid Healthcare FAQs (or opinions) ***

 

 

*** Special note: Please remember that the information posted here is not a substitute for working with a qualified physician on your care. 

 

 

The contents of this page were written by

Linda Silversmith and Larry Chinnery

 

Questions 3 & 9 were derived from materials 

written by Dr. Eugene Woltering with his permission

 

Permission to deep link into the Carcinoid Cancer Foundation was given by the  

Carcinoid Cancer Foundation

 

 

 

1.

Q. How can I be proactive for my regular medical care?

 

 

 

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.

 

 

 

 

 

 

 

2.

Q. How can I make sure hospital staff pays attention to any special instructions that I

 

 bring.

 

 

 

A. Make copies of any medical information you particularly want to share during hospital procedures on brightly colored paper to make it more noticeable.

 

 

 

 

 

 

 

3.

Q. What precautions do I need to tell my dentist about?

 

 

 

A. Here is what Dr. Eugene Woltering has said on the Yahoo and/or ACOR carcinoid e-group(s):

 

 

 

  • 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.

 

 

 

 

 

 

  • 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).

 

 

 

 

 

 

 

4.

Q. How can I carry emergency information about carcinoid cancer with me?

 

 

 

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 ...   

 

 

 

 

 

 

Make sure the item is comfortable for you and easy to put on or fasten (esp. watch out for awkward bracelet fasteners).

 

 

 

MedicAlert is a frequently mentioned source of pendants and bracelets and more. See ...   

 

 

 

 

 

 

You can search the internet for “medical alert jewelry” to find other sources.

 

 

 

 

5.

Q. What kind of basic information should I include on my pendant, bracelet, watch, or

 

 thumb driver?

 

 

 

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”.

 

 

 

 

6.

Q. What additional details can I include if I use a  USB drive with its larger capacity?

 

 

 

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. 

 

 

 

 

7.

Q. Where can I find the consensus report on using Sandostatin for carcinoid and

 

related neuroendocrine tumors?

 

 

 

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 ...

 

 

 

 

Click above document to access

 

 

 

 

 

 

 

... to see if paper reprints are available for you to order.

 

 

 

 

8.

Q. What does the consensus report say about  special preparations before, during, and

 

after surgery?

 

 

 

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 of neuroendocrine 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 ...

 

 

 

 

 

 

 

9.

Q. Are there alternative procedures that can prepare patient with carcinoid or certain

 

 other neuroendocrine tumors for surgery?

 

 

 

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.

 

 

 

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.
 

 

Steps for all patients undergoing invasive procedures:

 

 

 

  • 500 micrograms of octreotide acetate should be given IV push one hour prior to surgery.

 

 

 

  • Begin a 100-microgram/hour IV infusion of octreotide acetate. Use this infusion before, during, and for at least 12 hours post surgery. The infusion can be continued as long as necessary if the patient experiences mild symptoms like flushing or wheezing during the procedure.

 

 

 

If the patient gets in trouble during the procedure ...

 

 

 

  • Give 1000 micrograms of octreotide IV push and increase the octreotide infusion to 500 micrograms per hour.

 

 

 

  • Repeat 1000 microgram bolus doses as needed and increase the drip to 1000 micrograms/hour if the patient continues to be hypotensive or has evidence of ongoing crisis.

 

 

 

 

10.

Q. What is Sandostatin®?

 

 

 

A. Sandostatin® or octreotide is a medicine similar to a naturally occurring hormone in the body called somatostatin. Somatostatin is produced in various parts of the body such as the brain, gut and pancreas. It acts by preventing the release of other hormones found in the body, including growth hormone and insulin.

 

 

 

Click on the picture to see details ...

 

 

 

 

 

 

 

11.

Q. What is Sandostatin LAR® Depot?

 

 

 

A. Sandostatin LAR® Depot is a long-acting depot dosage form, consisting of micro-spheres of a biodegradable polymer containing octreotide acetate which allows injection once every 28 days. It exhibits all of the clinical and pharmacologic characteristics of the immediate dosage form of Sandostatin Injection with the added feature of slow release. This reduces the need for frequent administration.

 

 

 

Click on the picture to see details ...

 

 

 

 

 

 

 

12.

Q. How is Sandostatin LAR® Depot to be correctly administered?

 

 

 

A. Mixing and Administering Sandostatin LAR® Depot is done in a specific prescribed manner. The procedures must be followed exactly to prevent various kinds of problems.

 

 

 

Click on the picture to see directions ...

 

 

 

 

 

 

 

13.

Q. How do I find out about carcinoid clinical trials?

 

 

 

A. Select this link with your mouse ...

 

 

 

 

Clinical Trials

 

 

 

*** Special note: Please remember that the information posted here is not a substitute for working with a qualified physician on your care. 

 

 

 

This page was last updated June 25 2005

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