Encore at Rush set for Feb 8, 2010

Just got the word from Rush that I will start my second series of IL-2 on Monday, February 8th.  I will be admitted at 7:30am to the now familiar 11th floor of the Kellogg Oncology Ward.  The first round will be administered somewhere around 4-5pm.  Two weeks ago I lasted 6 rounds.  This time will be less, due to the fact that the body wises up and refuses to cooperate sooner.  Once again Masuo, Sharon, Debbie, and Karen will support me in the hospital.  That will be an easier job because of the careful monitoring of my fabulous Home Strengthening Team.  That team is composed of Marie Fischel, Margaret Nikitas, Jodi Shannahan, Mary Radelien, and Henrietta Day.  They made sure that good nutrition was maintained, meds were taken, yoga poses were tried and kids were intercepted.  I will share one little secret.  If you ever get hit with a whopper of a medical ailment, nobody's cooking can convince you to eat, like Betty Billington's can.  The woman must have a direct line to the Food Goddess.  Her corn bread alone is reason to get up in the morning.  Next week I shall continue with recuperation, prep some cancer fighting food to bring to the hospital since institutional cuisine was not working so well, and continue to flesh out this idea of developing a world class melanoma clinic in Chicago.

In search of a Moniker

Lunching with my friend Marie Fischel today, the issue of my hospital rep was raised.  Based on my "unique" patient style, Marie, a dentist herself, suggested that I quickly claim my own hospital moniker/label/nickname before hospital staff "assigned" me one.  Although in all honesty, I'll bet the staff didn't miss a beat in slapping a lovely secret pet name on my charts based on my performance/visit last week.

SO for those of you creative souls with nothing better to do in this grey month of January, let the naming begin.  Suggestions will be taken until February 1st, as I feel that I should not start the new month without a proper moniker.  The prize shall be your very own pirated hospital gown.  Don't hold back.  I know that some of you have just been waiting for an excuse to let it rip.

SUNDAE: I Know We Can Make It If We Try, Oh Yes We Can Can.

SUNDAE: I Know We Can Make It If We Try, Oh Yes We Can Can.

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Sitting on the Edge

Reading the Melanoma Research Foundation's (MRF) Winter Newsletter, I was again struck by the possibility of sitting on the edge of a miracle.  I know cancer patients can sound overly and sometimes ridiculously optimistic.  For those of you who have watched me fight melanoma...you know I've been a hard-core pragmatist since 2005.  But I really am struggling right now with a heat in my belly that is taking the form of hope.  Here is why...

Tim Turnham, Exec Director of the MRF, states in the Newsletter:

Earlier this fall, I heard one of the top laboratory researchers assert that within the next five years, more than half of all melanomas will be curable.  While others may object that this it too optimistic, I have not met anyone who disagrees that big changes are coming, and coming soon.  Given this opportunity, we are compelled to do everything in our power to accelerate the pace by which treatment options are investigated and, if shown to be promising, moved into the clinical setting.  We cannot make this happen by being timid, or through modest growth.

That said, my shoulder aches, my neck is pinched, my skin's peeling, fever comes and goes, fatigue is a constant AND I remain psyched.  I believe in my heart of hearts that there is no reason melanoma patients can't benefit from the example the breast cancer fight has made.  We are sitting on the edge of finding cures for a disease that discriminates against none of us.

Excellent Inaugural Flight...Rocky Landing

Hoping this post finds all of you ready for an adventurous and interesting day.

This is a quick post to let you know I am doing fine.  We had an amazing ride last week approaching IL-2 with several of Dr. K's new tools which enabled me to reach 6 rounds.  There is a definite benefit from being able to gain from others experience and Dr. K clearly has manipulated IL-2 a lot.

RUSH staff were real troopers.  At one point one of my nurses had to test my blood pressure every 5 minutes from 8pm until 1am, while we titrated a "constrictor" into me to kick my sleepy blood pressure up. Nurse Rhonda and my dear friend Karen Hirsch had the patience of saints.  Karen has seen me through many a rough time and continues to amaze me with her calmness. I on the otherhand, was not at my most zen.

In the meantime, poor Masuo was trying to get two teenagers through their last week of school before finals.  This was a little bit more of a challenge now that the kids are older and more aware.  Chris and Sachi have been incredible for almost five years now.  It is hard to believe this all started when Chris was 13 and Sachi was 11. Luckily, they have had my mother, Joan, to lean on throughout these years.

Perhaps the strongest sense I am left with is one of collaboration.  We are definitely charting new ground with Dr. K who seems like a humble but very able leader.  There is a lot to like about this guy which is important bkz the road I am on is rocky.

Lest anyone think this is a walk in the park, be assured that my landing was a challenge, filled with nausea, hallucinations, and vertigo.  Debbie Hepburn had the good sense to start very carefully monitoring the drugs when I could no longer keep it straight.  She is like a dog with a bone.  This is a good thing as we realize now we have to work harder at the "medication management process".  Deb has called for our own internal board review...and we will approach Series II in two or three weeks (that will be determined by a blood test today) a little tighter and sharper.  Timely drug delivery seems to be a real challenge, which is critical when you are need to take premeds for the drug.  Of course it is the gentle hand of Sharon Mann reminding me that while I fight like a tiger...we need to be sure to set some pillows, music, and bowls of soup aside for needed rest in the hospital too.

Lastly, I want you to know that I am dreaming big time these days.  I am just going to put this affirmation out there in the universe.

I WANT CHICAGO TO HAVE ONE OF THE BEST MELANOMA CLINICS IN THE WORLD.

I WANT TO RAISE A SHIT LOAD OF MONEY TO MAKE THIS HAPPEN...SOON.

ANYONE READING THIS IS CAPABLE OF HELPING ME, IN THEIR OWN UNIQUE WAY, TO MAKE THIS CLINIC A REALITY.

There I said it. Enough with traveling to the coasts.  Unfortunately, there are plenty of people right here in the Mid West facing this disease. Chicago has a terrific history of scientific discovery, philanthropy and guts which are the cornerstones of reaching a goal like this.  Now don't be surprised if I ask you for help.  I have some ideas and with determination and collaboration this can happen.  I still have to fight with melanoma, but I am also determined to push this goal hard.

OK now I am going to take a nap.

Steel is kicking @*&#$*

Just met with Dr. Kaufman and wanted to report the news.  Susan's white blood cell count dropped to 1.5 and her platelet level is now 56 (both extremely low) but he said that was good news!  He said that a low white blood cell count and low platelet level are both good predictors of success with IL-2.  He added that several reports say that patients tend to do better with these results.  He is very pleased with where Susan is at and that he feels she is doing "excellent".  He thought things would look much worse at this time so...things are good.  He is going to stop in tomorrow morning and reassess things and then decide if there will be a 7th course of IL-2.  New predictions are that she will be home Sunday morning...earliest.  Debbie Hepburn

Day 4 and strong as Steel

Susan made it through her 6th round of IL-2 (11 am). She is amazing!  Her skin has taken a bit of a hit but a new medication (new to Susan) was introduced to her (Atarax) and it makes a huge difference in making her skin condition more tolerable.  In addition to working hard with IL-2, she had her second hypnotherapy session at 11 am today and then requested a meeting with the pharma supervisor to try to solve the problems with drug delivery and other needed improvements here at Rush.  (She never rests...).   Dr. Kaufman is extremely proud of Susan and stated that she is an excellent patient and he is happy with her results.  (personally I think he is really amazed that she has made it through 6 rounds of IL-2 and is still requesting more!)  The nurses here are wonderful, dilegent,disaplined and really interested in Susan.  She is the first patient here that is in IL-2 treatment (in 6 years) so she is training them well. The residents are engaged and active as well (and cute).  While Susan is dealing with a few issues of low white blood cell count, low platelets and at times, low blood pressure, Dr. Kaufman will meet with Susan later this evening to discuss the possibility of a 7th round.  It probably wont be administered until midnight or later so we will keep you posted.  If not, Dr. Kaufman said that 4-6 rounds would be excellent and we are there!  Susan will be home, earliest Friday afternoon, latest Saturday evening.  We will keep you posted.  Thanks for all your wonderful thoughts and prayers...Debbie Hepburn

Rushing at Rush

Day 3 started with my 4th round of IL2 at Rush.  All is going well with tolerating the side effects, which include a very low blood pressure managed with drugs, beautiful water weight gain, itching, fever and a bit of restlessness.  A delay in receiving the fourth round may be working in my favor as I have a bit of time to recover and regroup for the following rounds. ( Dr. Kaufman feels receiving 4-6 rounds would be a great success.)  The fifth round could be administered at noon. 

I will post again soon.

Starting IL-2 at RUSH on Monday, January 11th

NOTE: If you just want to know what is going to happen skip down to the 5th paragraph.

Well just as I expected, after careful consideration, IL-2 has been chosen as the next treatment. Some of you might remember that I had a lovely go round with two series of this drug at the National Cancer Institute in the fall of 2007. After two series there was no tumor regression and I was moved onto cell transfer therapy.

Why revisit a "failed" drug? Because we are trying to figure out how I lasted twenty-two and a half months, between Jan 2008 and Nov 2009, on a chemotherapy that had a 10% chance of success. Furthermore, when successful, that chemo is usually effective for only 9 months. Many of you know that after four clinical trials, IL-2, and chemo, I refer to myself as a human cocktail.

Susan as a Cocktail

Consequently, it could be that we "failed" to understand the interactions all of my treatments could have on each other. It's very conceivable to my doc, my advocate team and me that while IL-2 might not be effective alone, it might have a latent boost on the immune system when triggered by something else. My doc is also making the argument that a body's antigens change over time, which might be why he has seen some of his patients respond quite favorably to IL-2 after no response initially.

The bottom line is that while IL-2 still only has an 11% response rate, it just might be able to trigger my immune system when I start the next clinical trial...which could be in March. (It is interesting to note that when NCI treated me with cell transfer therapy, they used IL-2 as a chaser).

What is IL-2 anyway? It is a protein produced by T-cells in response to antigenic or mitogenic stimulation. IL-2 is required for T-cell proliferation, discriminating between foreign (non-self) and self, and other activities crucial to regulation of the immune response. It can stimulate B-cells, monocytes, lymphokine-activated killer cells, natural killer cells, and glioma cells.

So the plan is as follows:

Monday, Jan 11th, 7am: Admitted onto RUSH Oncology Ward on 11th floor of Hospital

Monday, Jan 11th, 6pm: 1st round of 1st series of IL-2 administered. Will receive a round every 8 hours for as long as my heart and/or mind lasts. IL-2 has lots of fun side effects which are tricky but not permanent. In 2007 I lasted for 8 rounds the 1st series and 4 rounds the 2nd. Unfortunately, there is no clear statistical evidence that receiving more rounds of IL-2 is more effective.

Friday, Jan 15th: Anticipate Release

Jan 16th - Jan 31st: Recuperate carefully with compromised immune system

Monday, Feb 1st: Admitted back onto RUSH for 2nd series of IL-2

Friday, Feb 5th: Anticipate Release

Monday, Feb 22nd: Anticipate Series of Scans to evaluate IL-2 impact

Monday, Feb 22nd: Anticipate repeating Series four more time if impact is positive.

Early March: Anticipate entry into Clinical Trial if impact is negative.

Friday, April 30th: Possibly complete 6th and final series of IL-2

Lastly, for any of you considering playing mind games with me during IL-2 treatment...just be sure to make them fun!

NYC did... so how could Chicago raise awareness?

Marc Jacobs Reissues Celebrity Nude "Protect the Skin You're In" Tees to Benefit Melanoma Research:

Naomi Campbell, Heidi Klum, and Victoria Beckham Put on Birthday Suits for T-Shirt Campaign, Raising Over $1 Million for Melanoma Research at NYU Cancer Institute

May 17, 2009

NEW YORK—Marc Jacobs has reissued color versions of some of the most popular "Protect the Skin You're In" celebrity nude T-shirts as part of an ongoing campaign to raise awareness about the deadly skin cancer and benefit melanoma research at the NYU Cancer Institute at NYU Langone Medical Center. The campaign, which features more than a dozen celebrities baring all for skin cancer, has already raised over $1 million for the NYU School of Medicine's Interdisciplinary Melanoma Cooperative Group (IMCG).

But it wasn’t just altruism that got Jacobs involved -- or directed him to NYU. It was his longtime business partner Robert Duffy, who several years ago was diagnosed with melanoma after an NYU dermatologist friend convinced him to get a biopsy on a suspicious mole on his forehead.

Jacobs’ campaign is ongoing, and more celebrities are signing up. Will they all be naked? Yup. Part of the deal. “Let’s face it, naked celebrities get people’s attention -- and getting attention means raising more money and awareness,” says Jacobs. “Plus, I kind of like the fact that it’s a little bit ironic for a fashion company to be putting out the message: Forget about clothes. What’s important is saving your skin.”

You can see the Heidi Klum's black current tee as well as other celebrities and colors in the SPECIAL ITEMS section on MarcJacobs.com. You have to find the shirts by scrolling to the right to about the midway point.

T-shirts can be purchased in Chicago for $35 at:

Marc by Marc Jacobs Store

1714 N. Damen Avenue
Chicago, IL 60647, United States

Tel: (773) 276 2998

Here is a window pic from his prior campaign

Marc Jacob's 2008 melanoma awareness and fundraising t-shirts featured naked celebrity photographs and clever slogans such as “protect the skin you’re in,” “protect your largest organ,” and “save your ass.” Celebrities, who posed despite the advice of agents and managers, include Winona Ryder, Rufus Wainwright, Eva Mendes, Julianne Moore, Hilary Swank, and Selma Blair. Photographer Brian Bowen Smith traveled around the world multiple times for celebrity photo shoots for the project, which pays tribute to the late Dr. Jesse Rubin, a former dermatologist at NYU Langone Medical Center.

Docs who Specialize vs Docs who Customize

I am in complete agreement with Stan Adler's approach to treatment. He states on the Melanoma Research Foundation site that:

"The key for me was to identify the treatment sequence I would follow if the previous treatment failed. In my opinion, doctors seem to specialize in or favor specific treatment options. To me, choosing my doctor first meant limiting the number of treatment options I could access. So I decided instead to research the treatment sequence I wanted to pursue and then find the best doctors I could to implement them."

My own experience has also led me to believe that survival rates will increase when we can truly customize treatments for cancer patients. It looks like the UK-based Wellcome Trust Sanger Institute is bringing us closer to customization. They just cataloged the genetic maps of skin and lung cancer and have pinpointed the specific mutations within DNA that can lead to tumors. Scientists found that the DNA code for skin cancer contained nearly 30,000 errors. Researchers predict these maps will offer patients a personalized treatment option that ranges from earlier detection to the types of medication used to treat cancer. The genetic maps will also allow cancer researchers to study cells with defective DNA and produce more powerful drugs to fight the errors, according to the the study's scientists.

The challenge is how to find the right sequence of melanoma treatments from the right doctors'/clinics' specializations that can keep me alive long enough for a customized treatment to be developed. Of course then there is the issue of how to find the melanoma docs who become more interested in customizing treatment based on individual patients' needs rather than in specializing to find "the" cure. The reality is that we won't progress without both kinds of docs.

So I am headed to Rush Medical on Thursday to develop a treatment sequence with a doc who advocates "getting the latest advances coming out of research institutions into" cancer patients. He is a Head Researcher for an immunotherapy that I want to try but also has experience with a variety of treatments that might keep me alive until customized treatment is a reality. Guess it is game time!