ACOR.ORG

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.

Memorial Day Memories

My father is a West Point graduate, and my mother was a military wife (as were both of my grandmothers). Memorial Day gives us a chance to say thank you... to the soldiers and families of soldiers who make the ultimate sacrifice, every day.

My mom and dad (now divorced) were married at West Point


My Dad and I on the army base in Washington State

Even tough army officers have to change diapers and make little airplane noises to get their babies to eat...

My grandpa Di Maria in his air force uniform with my grandmother. (They have been married for over 60 years.)


My paternal grandfather, who died from diabetes before I was born, in his army uniform.




(I'm not a Tim McGraw fan... but darn this video is good.)

A Para-Equestrian's Passion

My beautiful mom showing off her Mother's Day present: a pictorial history of Jackie-O's lifelong passion for horses

My mom contracted polio in 1955; ironically the same year the vaccine came out - she was 5 years old. She spent 10 months in the hospital, and the polio left her with severe weakness in both legs. The doctors all said she'd never walk again, but she proved them wrong by walking, by herself with the aid of leg braces, up to the altar to receive her first Holy Communion. Afterward, she got a gift that would change her life: a ride on a white pony.

My mother in 1956 with my grandfather - taking her first ride on a horse while still wearing her leg braces, Holy Communion dress and veil

This began my mom's love affair with horses... but it wouldn't be until she was in her 50s that she would start competing competitively as a para-equestrian rider. Over the past few years, she has gotten so good that her competition level required her to get her own horse. After much searching, she finally found Andy - a beautiful white Arabian. I can't wait to meet him this summer.

Mom and her horse Andy at
REINS Therapeutic Riding Stables

My mother's grace and talent continue to inspire all who meet her, especially those in the equestrian community. Thanks mom for reminding me every day that there is no value in being a victim - only in living bravely.

Lyme Disease Testing

I saw Dr. Yager (GP) last Thursday, and picked up a prescription for a Lyme disease test. Here is how that brief encounter went:

Dr: what test do you need done?
Me: the cardiologist thinks I should be tested for Lyme disease.
Dr: that's a good idea, it could be Lyme disease.
(awkward pause)
Dr: did they find something on your EKG?
Me: I think some stuff with my right ventricle.
Dr: well, carcinoid can affect the heart ... but something always shows up on an EKG.
(handing me the script)
Dr: this isn't a very good test.
Me: what do you mean?
Dr: it can come back positive when you don't have Lyme disease, and come back negative when you do.
(second awkward pause)
Me: ok
Dr: it's not a very good test; we'll call you with the results.
Me: uh, ok. Thanks

15 minutes later, I was at LabCorp, getting yet another vile of blood drawn for a test that is apparently meaningless; I have absolutely no idea what to do when I get the results.

- Posted using BlogPress from my iPhone

Update 5/28: Lyme Test Came Back Negative. (Despite Dr. Yager's distrust of the results, I'm crossing Lyme off the list.)

Black Raspberries v. Carcinoid Cancer

A few weeks ago, I attended the Carcinoid Cancer Foundation's Symposium on Neuroendocrine Tumor Management at Mount Sinai Hospital. It was excellent; in particular, I was extremely impressed with Dr. Eugene Woltering from the New Orleans Neuroendocrine Tumor Specialists (NOLA NETS).

Dr. Woltering presented a radically different view and approach to carcinoid cancer treatment. Firstly, he considers carcinoid - whether a patient presents syndrome symptoms or not - to be a chronic disease because of its long term devastating effects on the body. He used the "hypothetical case" of a patient with a midgut carcinoid tumor (without noid or liver metastasization) to lay out what he considered to be the "standard of care" for carcinoid treatment following removal of the primary site tumor:

1. MRI and ecocardiogram every 6 months for the first three years following surgery;
2. Sandostatin monthly injections for a minimum of one year following surgery;
3. Octreoscan within the first year following surgery;
4. long term daily dose: 40 grams of black raspberry powder. (45 grams of freeze-dried powder is equal to 1 pound of fresh berries)

He also presented specialized target chemotherapy for recurrences... which he set at a much, much higher rate than Sloan Kettering does.

In short, he presented a more aggressive approach following surgery. Personally, I trust Dr. Nash, and prefer the "let's wait and see" approach rather than sandostatin injections and more screenings. I will, however, add the black raspberry powder to my diet.

The medical research (funded by the American Cancer Institute) Dr. Woltering presented on the benefits of black raspberries was overwhelming. The reason why it's such a "natural wonder drug" is that the antioxidant level in black raspberry powder exceeds all berry types - with anthocyanin (antioxidant) equaling 5 to 7 percent dry weight. Also, it is a COX2 inhibitor - reducing inflammation as well as slowing the growth of pre-malignant and malignant tumors.

The only problem is the cost (about 7$ a day). I have heard that some insurance companies will cover it with a prescription... I guess that's something worth investigating with my own insurance carrier (United Health Care). I'm not holding my breath.

Resources on Black Raspberry

Research about Black Raspberries and Cancer:
Science Daily Article: Black Raspberries Slow Cancer by Altering Hundreds of Genes
Ohio State Research: Black Raspberries Show Multiple Defenses in Thwarting Cancer
MSNBC: Black Raspberries Prevent Colorectal Cancer in Mice
Cancer Prevention Research: Black Raspberries Inhibit Intestinal Tumorigenesis Apc1638+ / - and MUC2-/- Mouse Models of Colorectal Cancer

Purchasing Black Raspberry Powder:
Note: you need to purchase 100% black raspberry powder - do not get tricked by products that advertise "black powder" made with blue raspberries! Also black raspberries are not the same fruit as the "blackberries" you buy in the store.

NutriFruit - $24.95 for 142 grams (most expensive)
Stokes Berry Farm - not accepting internet orders
Sturms Berry Farm - $79.20 for 5lbs of frozen berries (not powder)
BerriHealth - $340.50 for 3000 gram bulk powder
Acai Berry Pure Bulk - $325 for 5 lb bag (approximately 2267 grams)

Cardiologist

I saw a new cardiologist last week, who was less than impressive. Based on my experience, I put together a few tips for you budding heart doctors out there.

1. After a patient tells you that she had half of her colon removed because of a carcinoid tumor, your follow up question probably should not be, "so was it benign?"

2. Don't leave your patient alone for 20 min in the examining room while you google her disease.

3. Try to be specific when discussing test results, and avoid overgeneralized statements like: "I don't see anything very life threatening here."

4. Avoid starting sentences with: "well - you don't smell." (He wanted me to get fitted with a heart monitor halter before leaving the office - which would mean that I couldn't shower for 24-hrs).

5. Know how old your patient is, especially by the end of a 45-min appointment. (While flattering, the fact that he thought I was 26 years old, instead of 36, was a bit disconcerting.)

In addition to his bedside "quirks", my soon-to-be ex-cardiologist shared his initial findings based on my exam and echo test: irregularity (t-wave inversion) and insufficiency in the right ventricle with possible neurological disruption (causing heart rate to drop with exercise). He ordered a stress test, heart halter, and new echocardiogram. He also suggested that I get tested for lyme disease.

Initially, I scheduled the follow up tests for Thurs. - but decided to cancel them, since it's not a "very life threatening" condition; now I have time to find a different doctor before subjecting myself to more cardiac testing. In the meantime, I'll get the lyme disease test done - just to cross that possibility off the list.

Why Princesses Matter

"Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed." - G. K. Chesterton

Marlena, Princess of Emerson NJ (1976)

It's a strange phenomenon. We encourage little girls to grow up to become doctors and lawyers, yet we dress them up as miniature princesses every Halloween, and relentlessly play Disney DVDs over and over again, until they become obsessed with pink tulle dresses with matching sparkly tiaras. (Go to Toys 'R Us and just try to find the "high powered business executive" themed birthday party paper-plates, streamers, and napkins... not happening.) As we grow older, our fascination with princesses doesn't go away - it simply morphs into an "adult version" of a fairy tale: the wedding.

Diana, Princess of Whales (1981)

On July 29, 1981, my mother and I watched a beautiful 20-year old girl emerge from a horse drawn carriage and walk into St. Paul's Cathedral - with her 25-foot train, trailing behind her. I was seven years old at the time, and Princess Diana's wedding is one of the first clear memories of my childhood that I have. Last weekend, I once again watched a simple girl become a breathtaking princess ...

Catherine, Duchess of Cambridge (2011)

Catherine ("Kate") Middleton married her prince in Westminster Abbey, with 2.5-3 billion people watching; four years ago, about the same number of people watched another royal gathering at Westminster Abbey: Princess Diana's funeral.

Touchingly, the last hymn sung at Diana's funeral - "Guide me, O thou great Redeemer" - was the first hymn sung at her son's, Prince William's, wedding. As I watched Kate standing at the alter in her laced bodice gown, I was immediately reminded of Grace Kelly's wedding to Prince Rainer of Monaco.

Grace, Princess of Monaco (1956)

On April 16, 1956, American movie star Grace Kelly married Prince Rainier (who proposed three days after they met) and became Princess of Monaco. Life as a princess for Grace Kelly, however, was no fairy tale. Prior to her marriage, she was a very accomplished actress, starring in three Hitchcock films, and even won the Oscar for Best Actress in 1955. After her wedding, however, Prince Rainier banned all screenings of Kelly's films in the country, and refused to allow her to act in any future projects.

Sadly, Grace Kelly died at the age of 52 in a car accident. Ironically, Princess Diana was the representative for the British royal family at Princess Grace's funeral in September of 1982. (Diana, of course, was also tragically killed in a car crash - she was only 36 years old.)

No life is filled with only happiness, but as the expression goes, if we did not feel the cold of the rain, we would never appreciate the warmth of the sun. The divorce rate in America is about 50% - but that does not stop us from spending over a thousand dollars on a single beautiful dress that we will wear for just one day, and posing for hours for an overpriced photographer - hoping he will capture our own storybook promise of "happily ever after" on film.

These moments of celebration, of joy, of beauty are absolutely necessary; whether it's a wedding, prom, or quinceanera... we all need to see flashes of fables come to life - even if only for an instant - to remind us that sometimes the dragons really do get slain, and love really can conquer all.