The following guidelines are based on “My Carcinoid 11 Point Start-Up List,” originally developed by Mary Ann Hicks. This list is updated/modified and expanded upon as more helpful tips by other “noids” become available.
1) Contact the Carcinoid Cancer Foundation – call 888-722-3132, Eastern Time, to get a list of carcinoid specialists. You will need a specialist to lead your local oncologist in your treatment because, unless you are an exception, the local doctors will not even know how to spell carcinoid. The main quality you need from your local oncologist is a willingness to follow your lead. A list of experienced physicians can be found by clicking here: http://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
2) Know that you can FIRE your local doctor if he/she is not willing to provide you with the correct treatment.
3) After you visit with the specialist, encourage your local oncologist to call him/her and discuss your condition and treatment.
4) Read all you can about carcinoid and other related neuroendocrine tumors. The first websites you may want to visit are:
- http://www.carcinoid.org the site for the Carcinoid Cancer Foundation. Read and reread the transcripts from symposiums by the specialists.
- Visit Susan Anderson’s home page which has a wealth of information and links to many other good sites http://www.carcinoidinfo.info.
5) It is important to note that a lot of the information you read on the Internet will be out-of-date, so don’t be frightened by the statistics you see. If you are newly diagnosed, the first thing you may look for are the statistics. That’s only natural when you have been diagnosed with a terminal illess. Most of the statistics you see are based on old data. Look at the dates of the reference material. New drugs and procedures have been developed over the years, which have very positive bearing on your longevity.
6) Immediately start a notebook/medical record summary to bring with you when visiting your doctors. Let your doctor know that you are going to be very proactive in your treatment. and that your treatment will be a team effort right from the start. My treatment was going to be a team effort right from the start. A sample version of a medical record template can be found below.
7) You will be having lots of tests and procedures, and you should keep an updated profile to give to your doctors, and also to keep on your person and/or in your car in case of emergencies. Also make sure to obtain copies of all tests and reports and keep them in your notebook.
8) If you have carcinoid or carcinoid syndrome, it is advisable to wear a medical alert bracelet or necklace tag indicating that you should not receive epinephrine, which could precipitate a carcinoid crisis. Octreotide (Sandostatin) will control this crisis. One exception is the administration of epinephrine in the case of an allergic anaphylactic reaction (i.e. a bee sting), so it cannot be avoided in this case, just make sure that octreotide (Sandostatin) is also available.
9) There are several online support groups which might be of interest. CLICK HERE for a list of online groups.
10) As soon as possible, attend a local support group function or a national carcinoid seminar. For a list of national support groups CLICK HERE or can be obtained by calling 888-722-3132. (Tuesday-Thursday between 9:30 am – 4:30 pm Eastern time).
11) Don’t sit around and isolate yourself. It is very easy to get depressed. Get out and work with others as much as possible.
MEDICAL RECORD TEMPLATE
Sample medical history supplied with kind permission by Susan Anderson.
Susan Anderson’s medical record template
Susan Anderson’s Homepage: http://www.carcinoidinfo.info
Diagnosis ICD Codes and Date Diagnosed
1. Carcinoid Cancer of Ileum with mets in Liver…ICD: 152.2 — 10 May 1995
2. Infiltrating Ductal Carcinoma – right breast…ICD: 174.9 — 18 June 1999
3. Hypothyroidism (under active thyroid)……….ICD: .244.9 — 29 June 2000
4. Rosacea………………………………….ICD: .695.3 — 7 Dec. 2000
5. Hyperlipidemia……………………………ICD: 272.4 — March 2001
6. Neuropathy..(started in mid – 1980’s)……….ICD: .337.0 —
7. Rectocele……………………………….. — 3 July 2002
8. Plantar Fasciitis………………………… — 23 June 2004
9. Type II Diabetes Mellitus…………………ICD: 250.02 – December 6, 2004
10. Seborrhea Blepharitis……………………..ICD: 373.02
11. Rosacea Conjunctivitus……………………ICD: 695.3
12. Tear deficiency………………………….ICD: 375.15
CURRENT MEDICATION (as of December 17, 2004):
– Sandostatin LAR 30 mg, injection every 28 days (began 11 March 1999) Before LAR, I injected 300 mcg, 3x day, began Feb. 1998
– Vitamin B12, 1000 units 1M, injected monthly (began 28 June 2001)
– INTERFERON ALFA 2b: Inject 3.0 million units 3x week (began 21 May 1999) stopped & changed to –>
– Peg Intron-A 0.3mL changed to 1X @ week on Jan. 22, 2003
– Synthroid, 1x day 0.05 mg 7/31/00; some adjustments now .112 mg
– Neurontin, 100 mg, 1 cap 3 x a day (began 20 August 2004)
– Vit B6 400 mcg 1x day
– Vit B3 (Niacinamide) 500mg 1x day
– Multi Vitamin, 1x day
– Omega-3 Fish Oil 1000 mg 1x day (hit and miss)
– Multi mineral, 1 x day (hit and miss)
– Estrace, (cream) little “dab” as needed (began 2 June 2000)
– Tetracycline, 1x day (250 MG),(started 7 December 2000) (or as needed for Rosacea)
– Metro Cream 0.75%, 2x day, thin film on face (started 7 December 2000)
– Stopped: Tamoxifen 20 mg, 1x day (6 July 1999 through 2 August 2004)
– Stopped: Bellaspas Tablets(Bellergal-S),1x day 2 Jan.2000 thru July 2004)
– Stopped: Lipitor, 20 mg,1x day(Began 3-27-01-Stopped 11-9-03) Muscle damage, ankles, feet, legs, pain, weakness
– Stopped: Glucosamine Sulfate 500 mg 3x daily (began 24 March 2002) (did not continue)
– Stopped: Crestor 10 mg, Began Apr 24, 2004,last June 22, 2004 (trial)
– Mefloquine 250 mg 1 x week for 6 weeks, March 5 — April 9, 2004
– tPA (tissue plasminogen activator) infused 40 CCs:
June 24, 2002, March 31, 2004
– Cortisone injection (for plantar fasciitis) 23 June 2004, 17 Sept. 2004
– Neupogen, 400 mcg, Aug. 12-15; Oct. 22-24, Nov. 1, 4; Dec. 2-5, 2004
July 24, 25, 28, 2003 ONLY
– Diflucan 150 mg, Jan. 22 & 23, April 7, 2002 ONLY
– As needed: – Acyclovir 400 mg,- Codeine Sulf 30mg or – Percocet 5mg/325mg
-Metformin, 500 mg, began December 6, 2004, 1 capsule 2xday; changed on December 15, 2004 to 2 caps 2xday
-Neurontin, 100 mg, 1 4x day (8/20/04); Changed on December 13, 2004 to 300 mg 1 cap 3x day.
Allergic to Sulfa – Avoid Morphine – DO NOT USE EPINEPHRINE
—————————————————————————-> -> Use Hueber needle to access Groshon “port”
(Groshon “Port” in left breast)
CARCINOID SYNDROME MAKES A CARCINOID CRISIS POSSIBLE:
— Treat LOW blood pressure with: sandostatin (octreotide) and hydrocortison
— Treat HIGH blood pressure with: nitroglycerine and verapamil
– DO NOT USE EPINEPHRINE
Chemo we have used for Carcinoid:
– Late Feb. 1998 through end of May 1998 (Once a week for 12 weeks)
— Leucovorin 35 mg/m2; — 5-FU 400mg/2m; — Streptozotocin 350mg/m2
– Sept. 1998 through March 1999 (Every four weeks for 7 months)
— 20 mg Decadrom & 5 mg Zofran followed by — 650 mg/m2 Dacarbazine (DTIC) diluted
HRT: Fall 1987 -> June 1999: Premarin 0.9 mg, 1x day (for years)
RADIATION: July 19 – Sept. 14, 1999: 33 radiation treatments for breast cancer (IDC)
1944 May – tonsillectomy
1954 – no surgery, BUT mononucleosis AND Hepatitis
1973 Sep – hysterectomy (left both ovaries)
1994 Jun – gall bladder removed
1995 May – small bowel resection (85 cm) and six lymph nodes – Carcinoid diagnosis
1998 Oct – left subclavian Groshon central line implanted with subcutaneous port
1999 Apr electro cauterization inside left side of nose
1999 Jun – surgical biopsy right breast
1999 Jul 19 – Sept. 14 – RADIATION – 33 radiation treatments for breast cancer (IDC)
1999 Oct – Partial liver resection of segments 5 & 6; full exploratory laparotomy; lysis of adhesions involving the omentum, small bowel, large bowel & bilateral adnexa; right ureterolysis; bilateral salpingo-oophorectomy; removed nodules from descending colon, bladder serosa & cul-de-sac pertioneum.
2002 Nov. 5 – Four posts implanted in lower jaw, preparing for full dental implants
2002 Dec. 6 – Remove old Groshon central line & implant new Groshon central line
Dr. Richard R. P. Warner, M.D., Mt. Sinai Medical Center, New York City Phone: 212-241-4299– FAX: 212-426-5099
Dr. Jack R. Cavalcant, M.D., ph: 480-969-3637, FAX: 480-969-6568
Dr. Matthew Borst, M.D., ph: 602-253-5300, FAX: 602-253-4400
Dr. Sandra Levitt, M.D., ph: 480-820-1133, FAX: 480-820-2175
Dr. David A. Suber, M.D., ph: 480-838-1000, FAX: 480-491-6894
Dr. J. Greg Rula, M.D., ph: 480-969-4138, FAX: 480-969-0630
Dr. David B. Leff, D.O., ph: 480-834-0771
Dr. Bruce W. Krell, DPM, ph: 480-807-8532, FAX: 480-807-0420
(Please note the above phone numbers are not necessarily current)
NOTE: It is with great sorrow that we report the passing of Mary Ann Hicks on November 9, 2004. Mary Ann will be remembered for the invaluable contribution of her “11 Point Start-Up List”.