IT IS UNDER
"Carcinoid & NET Foundation and discussion SITES & LINKS- very important."
I AM POSTING THIS INFORMATION AGAIN TO REMIND YOU OF THE INFORMATION THAT IS AVAILABLE IN THE "NET WORLD" RELATIVE TO NET/CARCINOID RESOURCES AND DISEASE MANAGEMENT. ITS IN ALPHABETICAL ORDER.
SOME SITES I REALLY LIKE, AND FIND MOST USEFUL ARE:
- CARING FOR CARINCOID FOUNDATION- GREAT FOUNDATION, BEST PEOPLE
- CARCINOID FOUNDATION- THE FIRST FOUNDATION, EXCELLENT INFO
- CCNETS CANADA- CANADA SITE, GREAT VIDEOS, GREAT PEOPLE
- CCENTS SINGAPORE- ASIA SITE, GREAT VIDEOS, GREAT PEOPLE
- ACOR-#1 CARCINOID DISCUSSION BOARD, GREAT PEOPLE
ALSO, AS NOTED MANY TIMES IN THE BLOG, ONE OF MY GOALS IS TO RAISE MONEY TO FIGHT THIS DISEASE. I HAVE SET UP A VERY EASY WAY FOR YOU TO CONTRIBUTE WITHOUT SPENDING YOUR MONEY!
IF YOU GO TO THE ADVERTISEMENT LINKS, RELATED TO CARCINOID & METS CANCER, ON THE LEFT HAND SIDE OF THE BLOG, AND YOU CLICK ON SOME OF THE EXCELLENT COMPANIES ADVERTISING (SOME ARE HOSPITALS, SOME ARE FOR TRIALS, MEDS, ETC) AND YOU BROWSE A FEW OF THESE, IT GENERATES MONEY FROM GOGGLE. THESE FUNDS ARE EARMARKED TO GO TO CARCINOID ORGANIZATIONS ABOVE DIRECTLY!
Separate topic
HOW TO BEST MANAGE YOUR DISEASE
It is very important, when diagnosed with this disease, that you research the various carcinoid sites and use the network ACOR, to start your support network quickly.
With carcinoid, most regular oncologists/MD's are not familiar with the disease. Even if you see an Onco who specializes in the disease, there will be choices as to what you will be given for treatment plan, so its important YOU have an understanding, and work in partnership with your MD's to help in managing your disease, and to ensure you get the right treatment and/or surgical plan that meets your needs and you MD's.
I did not do this initially and made mistakes along the way and choices I should not have let happen. Some of these decisions are preventing me from getting treatments I otherwise would have had, to keep me alive longer, so become an informed patient and help in developing the right plan for you and your disease. Remember, sometime I learned when I finally starting to get 2, 3 and 4th opinions on my very rare disease and treatment plan. I got different approaches from a number of MD's-- none were wrong, however, it meant there are many ways to get treated which means you need to learn what those options are and then match that up against what you know your body can tolerate, the MD and surgical team and skills and overall "gut feeling" as to what will work, what body parts are being asked to be removed, versus tumors in body, data, data, then make an informed decision and support medical team 100%. If you feel this is too much, then your most important activity is to find the right Md and team that will protect and be your partner in this battle. Then let them at it! I did both, and have now chosen the former process as my preferred method in managing my disease and remaining life.
With that in mind then, STUDY, LEARN and HELP YOUR MD MANAGE YOUR DISEASE, AND participate in making the CHOICE AS TO THE RIGHT OPTION FOR TREATMENT.
IT MAY MAKE THE DIFFERENCE BETWEEN QUALITY OF LIFE, & TIME REMAINING.
MAKE SURE YOU CHOOSE THE RIGHT MD TO HELP YOU THROUGH YOUR DISEASE. AFTER YOU FIND THE MD, FIND 1-2 OTHERS, EXPERTS IN CARCINOID, AND USE THEM FOR SECOND OPINIONS AND TREATMENT PLAN ANALYSIS. I WILL POST A LIST OF MD'S IN A LATER POST BUT BOTH CFCF AND CF HAVE AN EXTENSIVE LIST OF PRACTICING PHYSICIANS THAT SPECIALIZE OR UNDERSTAND CARINCOID/NET TUMORS BY GEOGRAPHIC AREA.
A MD once told me, an refreshing remark when I posed a question in March. This physician is one of the leading carcinoid experts in the USA. I asked him about the "multiple & different options one receives relative to treatments on this disease, even from carincoid experts. why? He noted "STEVE, NONE OF US HAS THE ANSWER AS TO HOW TO REALLY TREAT OR CURE THIS DISEASE, EXACTLY. THEREFOR IS NO REAL STANDARD APPROACH, SO; YOU WILL RECEIVE INFORMATION FROM THE MD THAT IS TREATING YOU AS TO WHAT HE PREFERS, BELIEVES IN and FEELS COMFORTABLE WITH. YOU WILL ALSO ONLY BE AS GOOD AS THE PLACE YOU ARE AT. BY THAT, ONE PLACE MAY HAVE A NEW EXPERIMENTAL DRUG THAT OTHERS DO NOT, OR ANOTHER HAVE SKILLED SURGEONS AND TOOLS WHEN OPERATING."
fFrom a positive perspective, there are a lot of excellent CARCINOID DOCTORS AND SURGEONS IN THE USA AND THE WORLD! YOU HAVE TO FIND THEM and FIND THE ONE THAT MEET YOUR CRITERIA. THAT MAY MEAN YOU WILL NEED TO TRAVEL TO GET THERE....ITS WORTH IT!
As an example ON DIFFERENCES ON TREATMENT MODALITIES IN MY JOURNEY, there is a very well known MD I visited that does not believe in Sandostain as a tumor inhibitor or treatment, unless you have the syndrome! That is in contrast to the literature and by other MD's on the benefits on SANDO in fighting this cancer. "SO", STUDY, LEARN AND CHOOSE YOUR MD TEAM WISELY!
AND FINALLY, AS AN EXAMPLE OF THE IMPORTANCE OF THE INTERNET AS A TOOL TO LEVERAGE TO SURVIVE THIS DISEASE:
IN FEBRUARY 2009 I WAS TAKEN OFF THE EXPERIMENTAL DRUG AT MDANDERSON CC.
I WAS GIVEN A REFERENCE TO SEE ANOTHER MD IN WISCONSIN FOR ANOTHER EXPERIMENTAL TREATMENT (DR CHEN) , WITH NO OTHER OPTIONS. I VISITED THE MD, AND DECLINED, AFTER I STUDIED, AND ASKED OTHER MD'S ABOUT THEIR TREATMENT PLAN.
IN MY DESPAIR FOR A TREATMENT (MY INSURANCE COMPANY WOULD NOT COVER ME TO VISIT A NEARBY CARINCOID MD DUE TO THE FACT THEY STATED MY CONDITION WAS "NOT CRITICAL OR LIFE THREATENING"!
I SEARCHED THE INTERNET FOR A MIRACLE AND FOUND ONE! I SAW A VIDEO, FILMED IN SINGAPORE DURING A CONFERENCE. HIS PRESENTATION WAS ON PRRT TREATMENTS AND KIDNEY PROTECTION PROTOCOL (UP TO THAT TIME i THOUGHT i COULD NOT HAVE PRRT DUE TO MY ONE, NOT SO GOOD KIDNEY). THE PRESENTATION WAS FROM DR RICHARD BAUM, AT THE BAD BERKA CLINIC IN GERMANY (I HAVE THAT VIDEO LINK POSTED, A FEW ENTRIES BELOW).
AFTER I SAW THE VIDEO A COUPLE OF TIME, I WROTE BILL CLAXTON, OF THE SINGAPORE CHAPTER OF THE CARCINOID AND NET TUMOR ORGANIZATION (CNETS SINGAPORE), AND ASKED HIM FOR INFORMATION ON DR BAUM. HE WROTE ME BACK IN ONE HOUR OR LESS WITH HIS CONTACT INFO! I THEN WROTE DR BAUM, ON A SUNDAY AT 9PM, WHO RESPONDED TO MY EMAIL. PLEA FOR HELP, IN 45 MINUTES!!!!
WE SET UP AN PATIENT TELEPHONE CALL FOR THE FOLLOWING MONDAY. I SUPPLIED HIM WITH ALL THE INFORMATION HE REQUESTED VIA EMAIL ( THIS IS VERY IMPORTANT, KEEP ALL YOUR RECORDS, ESPECIALLY PATHOLOGY OF YOUR TUMORS, CURRENT BLOOD WORK AND LATEST SCANS AND MD REPORT. ALSO TRY TO SUMMARIZE A HISTORY OF YOUR TREATMENTS ON A ONE PAGER. I HAVE AN EXAMPLE ON MY SECOND AND THIRD POST ON THIS BLOG).
DR BAUM WAS GRACIOUS ENOUGH TO ACCEPT ME AS A PATIENT, SET UP AN APPOINTMENT QUICKLY TO BAD BERKA FOR TESTS AND TREATMENT (PRRT) DUE TO THE SERIOUSNESS OF MY CASE. THIS IS WHAT HAPPENED NEXT:
-- MAY 18, 2009 TESTED AND ON MAY 25 I RECEIVED "LIFE SAVING TREATMENT" W/PRRT (LU177).
TODAY I AM FEELING THE BEST I HAVE FELT IN 3 YEARS, AND MUCH REDUCED EDEMA TO BOOT! TO BE CLEAR, I AM STILL COVERED WITH TUMORS AND THE TREATMENT JOURNEY HAS JUST BEGUN, AND THE RESULTS ARE TEMPORARY, BUT ITS SOMETHING, RIGHT?
THIS HAPPENED DUE TO MY SELF INITIATIVE TO STUDY, UTILIZING RESOURCES AND FRIENDS ON THE NET, INTERNET, AND DR BAUM'S WILLINGNESS TO TALK TO ME AND TREAT ME SO QUICKLY. (ALSO, I RECEIVED WONDERFUL SUPPORT FROM MY LOCAL MD'S AND THEIR PA'S IN THE US- DR BOTHA, DR NUESS (ARLEEN) & DR SHAH (DARIA) TO MY REQUESTS FOR MEDS, 2ND AND 3RD OPINIONS, AND INFORMATION! NET, I CONISDER THIS SOMETHING SHORT OF A MIRACLE AS MY CONDITION ON MAY 14, 2009 WAS AT ITS WORSE AND HAD NO WHERE TO RUN. AFTER I SAW MY SCANS AT BAD BERKA, AND THE EXTENT OF MY DISEASE-- LIVER FULLY COVERED, METS IN LYMPH NODES IN BELLY, AROUND VENA CAVA, AORTA AND UP TO THE KIDNEY VESSEL AND AN OMINOUS LESION IN THE BONE, IN THE BASE OF MY SPINE, HEADED STRAIGHT FOR THE NERVES! I DID NOT HAVE MUCH TIME LEFT, EVEN IF I REMAINED ALIVE, I WAS HEADED FOR A DROP IN QUALITY WITH THE SPINE LESION!
BECAUSE OF TH I IS TREATMENT, I AM STILL ALIVE TODAY AND KICKING TODAY! I AM FEELING BETTER WITH MY LIFE AND QUALITY OF LIFE FOR A LONG TIME. AND I FEEL THAT I HAVE THE RIGHT TEAM OF MD'S SUPPORTING ME IN MY FIGHT AND MANAGEMENT OF MY KIDNEY.
SO THERE YOU HAVE IT.....MY ROAD MAP FOR SUCCESS! (AS NOTED, i WILL POST THE MD'S ON LATER POST. ALSO, WILL POST PRRT CENTERS AND "HOW TO GET THERE").
SO FOR THE MOMENT, HERE ARE THE CARCINOID WEB SITE INFORMATION-- THE LINKS ARE ON THE LEFT HAND SIDE, DOWN, ON THE BLOG (SORRY, BUT I AM NOT MAKING IT THAT EASY).
GOOD LUCK AND GOOD HEALTH!!!! (PLEASE, IF YOU HAVE A STORY TO SHARE ON SOMETHING SIMILAR, OR HAVE A QUESTION THAT I CAN HELP, CONTACT ME THROUGH EMAIL).
WEB SITES AND DESCRIPTIONS
* ACOR DISCUSSION AND WEB SITE CARCINOID DISCUSSION BOARD#1- SIGN UP NOW!
* Cancer Net
* Carcinoid Cancer Awareness Network- great for online conferences webinaire!
* Carcinoid Cancer Foundation- the "mother of all" sites for carcinoid, original carcinoid site, run by Mrs Warner, spouse of Dr Richard Warner, oldest site-excellent and my blog is on the site!
* Carcinoid-NeuroEndocrine Tumour Society Canada
* Caring for Carcinod Foundation- great site & GET IN SHAPE, good fund raising program & fantastic site for individual survivor stories including my blog on the site!
* MDAnderson- my appointment calender for schedules test etc
* NANETS- North American Neuroendocrine Tumor Society- new site, purpose is to improve neuroendocrine tumor (NET) disease management through increased research & educational oppts. managed by key USA MD's.
* National Comprehensive Cancer Network
* Neuroendocrine Clinic in NOLA...,my last hope with some the of the best most knowledgeable doctors and staff around!
* Rare cancer forum....good site to talk our wild and crazy disease
* Singapore NETS Org- good information, videos, carcinoid battle from Singapore! Globalization at its best...
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