Wednesday, October 31, 2012

Trick or treat!??? Two years post last surgery/melanoma

This time of year has taken on a strange meaning for me. Having spent 28 years taking care of kids...that's a lot of goblins. Fun was had all day in the office trying to make the day a little brighter for the sick ones as well as the healthy ones insulted by vaccines and other injustices. Then, there are the memories of my own critters as Pocahontas and Powhatan, Spider man and Pinky-pink power woman, a goblin and a fairy princess...little ones at the door tonight...treats all.  Just this past weekend, B and I had our third lovely evening attending Vince Gill's annual benefit performance for the children treated at our local center for child abuse.  A real treat for a great cause.

Two years ago I was experiencing a bit of a trick, being just days post tonsillectomy, due to my third met from melanoma in 6 months time. Currently, I am dealing with some pretty tricky and significant skin flares and itching with joint aches secondary to my last anti-PD1 infusion.  Meanwhile, so many on the east coast and those dealing with active melanoma have certainly been tricked indeed.  My small ordeal is nothing more than a treat in comparison.

May your coming days be filled with more treats than tricks - c

Friday, October 26, 2012

New Orleans!

When in New Orleans, you have to have beignets and chicory coffee at Cafe du Monde!  Opened in 1862 in the New Orleans French Market, it has become a New Orleans institution.  I was surprised to note that the servers were almost exclusively Asian.  Not a judgement, just an observation of a significant change over the years, which has been noted in reports of the city's demographics, with a recent increase in the Vietnamese population in particular, as well.
Located on the Mississippi River, New Orleans was a principal port city in the 1800's and remains one of the largest, busiest ports in the world.  Continued development of the area over time, led to city growth as well as erosion of the surrounding marshlands and swamps.  Development of the Gulf Outlet Canal, in particular, left the city, with more than 51% of its land noted to be at or below sea level, at risk to hurricane-induced catastrophic storm surges as played out in heart rending detail by storms like Katrina.
Night life in The Big Easy.  Street performers continue to work their trade. There has been a definite increase in the palm and taro card readers since my last visit. Many talented musicians still play at various street corners, along with the usual hucksters, "tap" dancers and preachers.  Traditional Jazz, however, is becoming a bit elusive in this city who gave birth to the genre.
Vieux Carre' (The French Quarter) dates from the French and Spanish eras and their influence remains evident in the food and architecture.
Saint Louis Catholic Cathedral is a central landmark in the city and provides a backdrop to the mule carriage rides and artists who work to sell their wares on the wrought iron fence outside its grounds.
Color in the quarter.
If you are lucky enough to get to visit this beautiful city, be sure to eat at Willie Mae's Scotch House in Treme'. Her fried chicken is absolutely THE BEST I've ever had.  A muffaletta from Central Grocery should not be missed.  Brent picked us up a couple to enjoy as a picnic on our return trip home.  And, finally, DO NOT MISS a chance to check out Cochon Butcher on Tchoupitoulas.  It is unbelievably delicious.  Their head cheese with chow-chow and mustard, duck pastrami sliders, roasted  brussel sprouts, and buckboard bacon melt with collards on white were worth the trip alone. 

New A'wlins. Nostalgia. Now.

New Orleans is one of my favorite places to visit. Brent and I just returned from what was, I think, my seventh trip to that unique American city. I used to get off work from my 7a-3p shift at the hospital and drive down 59 to visit Ruthie who lived there at that time. No map. No cell phone. No GPS. No real directions. But, I found her! We still laugh about the craziness of that first visit.

New Orleans was the destination of my first ever plane flight. A plane ticket acquired through some consulting work for a hospital. I used the precious ticket to visit the Big Easy and Ruthie again. I was so excited. Flying!  Me! The trip was done in a blink. It was filled with wonder and pride. I was having my own adventure, earned through my own talents, enjoyed alone, by choice. A thrill I wish for anyone, at any age, if you have yet to experience that kind of personal challenge, independence, and autonomy.

Over the years, the myriad aspects of my nostalgia for New A'wlins has expanded exponentially. Growing up among the swamps, mossy live oaks and pines of South Alabama makes the bayous of Louisiana comfortingly familiar. I have so many fond memories of fun with Ruthie. My first hurricane... Yep. From Pat O'Briens. Have to say, not a big fan of an odd mixture of alcohol combined with fruit juice that turns out to be incredibly similar to red Kool-Aid. But, I am ever so glad I've been there, done that! My first egg roll!  My first city bus ride. Lame, I know!  No Chinese restaurant or public transit available where I grew up!!!  But, true, nevertheless! 

So many great visits with Brent. The American Academy of Pediatrics has their meetings there periodically. While pregnant with Fred-o we had a wonderful visit. Brent went off for his morning run with the promise of bringing me breakfast on his return. MANY hungry minutes, if not hours later, a very bedraggled Brent FINALLY appeared with a sad, beat up, sack of pastries. It was February. Not thinking, Brent had taken off for his run, only to discover on retracing his steps, that his path was cordoned off for an early Mardi Gras parade. He ended up running a total of 15 miles that morning in order to reach the end of the parade barricades and double back to the hotel. The parade officers were apparently unsympathetic and unmoved by his desperate plight. I still don't feel particularly sorry for him either. Hungry pregnant lady left in the lurch! We still have our Panama hats from an earlier visit, as well as fond memories of Miss Ruby' of the best restaurants I have ever had the privilege of having barbecue shrimp in. Now, you have to understand that barbecue shrimp in N'awlins has nothing to do with barbecue. Never's just too complicated for this post. Then, there's the memory of B's questionable appreciation of the small, perfectly cooked crab hanging from the side of his cup of gumbo at the same meal. His real sentiment was, "Waiter! There's a bug in my soup!" Silly boy! 

On our last visit, just before Katrina, we took the kids to Mardi Gras.  Bourbon Street was shared in small doses.  They got to see some of the early parades.  We almost froze to death, after I had promised balmy weather.  They were so excited to catch the beads being thrown from the floats.  Unfortunately, drunken adults also think that plastic shiny beads are of great value and have a much greater reach on a then 10 and 12 year old.  Fred was a pretty agile guy, but bead accrual was not going well.  I gave Brent the heads up to sneak over to a stand that conveniently sold beads to the unsuccessful parade watchers and purchase a handful so that he could provide a selection of beautiful beads heroically 'caught' by dad!!!  The kids were so enthralled with all the sights and sounds that they didn't notice his absence.  However, Brent was gone so long, I wasn't sure the subterfuge would hold out. He finally returned...loads of beads in hand.  The hero indeed!!!  Later, I asked about the incredible time it had taken.  He maintains the this day...  

"I made it over to the stand, which was over in the dark, by the way!!!, and got a handful of beads from the guy.  I was almost back over to you when I finally got under the street lights.  I looked down.  I couldn't figure out what was on the beads for a minute.  Then, I realized!!!  I had beads with penises threaded on the chain between them!!!!!  I couldn't give those to Rose!!  I had to go back and exchange them for different ones." 

I couldn't stop my laughter or myself from interrupting...."What excuse did you give for needing to exchange them???!!!!" 

"I told him I had thought they were chickens!"

Only in New they sell penises on a string.  Only there, does B take them back "because he thought they were chickens!!!!!"

Sometimes, nostalgia catches me by surprise. As Brent and I walked along St. Charles and picnicked in a park near the universities, I couldn't help feeling the long ago ache of wanting so much to be smart, to be educated, to do something important.  In my teens I wanted to attend either South Alabama (and then train in marine biology at Dauphin Island....a whole plan that B finds incredible since I am fearful of many animals and desperately sea sick on most any boat! Good points, I realize, but I still love the bay, tidal pools and marshes!!!), Tulane, or UAB. With no fairy god mother waiting in the wings, I soon adjusted my perspective and called on the pragmatist within.  Those universities and their tuition were not within my grasp.  However, a full books and tuition scholarship to the local junior college was.  I set my aim on that and was awarded it upon high school graduation.  I am not sad about how things turned out.  I attained my BS from the University of TN.  Years later, I was admitted to Emory, Vanderbilt, and UAB, where I ended up getting my MSN because they had the schedule that best met my needs.  With all that said, it was still a tangible pain, just last week, to walk in that place, and feel the ache and desire of that girl...who wanted to do so much.

And then, there are the streets.  I love the street names in New Orleans.  I would move there, just to be able to use them in everyday conversation.  Annunciation. Tchoupitoulas. Felicity. Carondelet. Derbigny. Constance. Liberty. Magazine. Chartres. Harmony. Pleasant. Terpsichore. Toulouse. Poydras. Constantinople. Bienville.

Today, there are still far too many roof tops with blue tarps.  Too many tall buildings, many seem to have been hotels, with broken windows and overgrown parking lots, abandoned. Too many homeless.  Canal Street and St. Charles, main avenues for the genteel, are rutted and difficult to drive on because of the inundation of water and heavy emergency vehicles in the wake of Katrina. The lower part of Canal and all the roads in the quarter are currently under massive construction.  Skinned and waiting for resurfacing. Sidewalks broken with street lamps down...awaiting and in process of repair.  All good of course, but really?  Only now?  This many years after Katrina who wrought her devastation in 2005!  The wheels of government assistance move slowly. Treme and the 9th Ward continue to struggle.  Which they always did, only now, more so.  Many buildings, homes, are boarded up.  Abandoned.

As Americans, we are always at our best when our various immigrant ancestors put down roots, meld with the conditions and produce and people at hand.  They bring their culture and blend it with those of others.  No dish served daily in New Orleans is replicated in Spain or France, Canada or Africa. Yet, without all of those folks, the gumbo, etouffe, macque choux, red beans and rice, andouille and boudin, po boys, remoulade, jambalaya, cajun coffee and beignets would not exist.  And the world would be much sadder for it. - c

Sunday, October 14, 2012

My punkins!!!

Brent has made Jack-0-Lanterns with the kids for 22 years now.  Fredo had to work and then come home and work (Poor baby!!!) clearing out years of debris under the porch so Rose and B were on their own this fall break. My only job is to photograph the event, and as you can tell by the ghostly circle on the print...I don't do that very well!!!  But, there they are, shielded from the elements on the Element!  Hee, hee!
The artist indoors....
Pretty girl!
Critical carving!!!!
Headed back to K'ville!!!
And there you have it!  Glowingly awesome....Punkin PI and a PIrate Punkin!!!

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Friday, October 12, 2012

Rose Bengal sustains high response rate in Melanoma patients!!!

According to a report on the abstract "Immuno-chemoablation of metastatic melanoma with intralesional Rose Bengal" by Agarwala, Thompson and Smithers in Ecancer news, Oct. 8, 2012:

Injecting cutaneous melanoma sites of stage III-IV patients with PV-10 (Rose Bengal) delivered sustained high response rates, reports an open label phase 2 study....It also revealed an additional 'bystander' effect in nearby non injected lesions.  Rose Bengal is a derivative of fluorescein, an agent that has been used for over 80 years to stain necrotic tissue in the cornea and as an IV diagnostic of liver impairment.  Its novel use in melanoma was discovered by Provectus Pharmadeuticals Inc (Knoxville, TN) while exploring different formulations for use in photodynamic cancer therapy.  By serendipity the company discovered that PV-10, a formulation developed to be administered directly into solid tumors, destroyed tumors without the need for light activation....[Of course,] the approach is only applicable to a subset of melanoma patients with cutaneous accessible disease.

In this Phase  2 single arm trial, 80 patients with stage III-IV melanoma received up to four courses of PV-10 injected into up to 20 cutaneous and subcutaneous lesions.  For each, a bystander lesion was identified that underwent biopsy to confirm melanoma, but did not undergo injection.  Patients were treated at seven centers in Australia and the USA.

Results:  Objective response was achieved in 51% of target lesions (25% complete response and 26% partial response).  Furthermore, disease control (combined Complete, Partial, and Stable responses) was achieved in 69% of lesions.  In bystander lesions: 33% = objective response and 50% achieved disease control in these lesions.

Overall survival: Stage III patients achieved a mean overall survival of at least 12.6 months versus 7.3 months for Stage IV.  

According to Dr. Agarwala, "These results confirm the robust response that can be achieved with PV-10 that was first seen in a preliminary report presented in 2010 in 20 patients."

It was also noted on MRI of 2 patients in the study that there was regression of lung mets.  "These were small lesions. It was an interesting observation but we will need a randomized study to demonstrate the effect," said Dr. Agarwala.

A Phase 3 randomized control trial, with 180 subjects with Stage III-IIIC melanoma, randomized to PV-10 or systemic chemotherapy is expected to start in early 2013 at centers in Australia, the US, and the EU.  Dr. Agarwala noted that Rose Bengal was likely to be used in combination with other agents, such as ipi and vemurafenib.  'Additionally, injection with PV-10 could be used as an adjunctive treatment to trigger an immune response prior to surgical removal of the tumors," said Dr. Agarwala.

And, to think!!!!  I place fluorescein in some kid's eyeball at least once a month to check to see if they have a corneal abrasion from strange kiddie activities involving various sports or disasters like: "my sister poked me in the eye with her straw!"  Perhaps, I should have been rubbing it over my skin.  I would be the color of a pumpkin with liver disease and glow in presence of a black light, but hey!  I'd be ready for Halloween!!! - c

Monday, October 8, 2012

Global Anti-PD1 Trial

From the moderator of the MIF Forum:

"I have just heard that the Merck PD1 trial, a phase three, will be opening 500 global slots in mid November. This will be for IPI refractory (folks who have progressed on IPI) randomized to a choice of 4 chemos (leader decides) and crossover allowed at 12 weeks to PD1 if progression occurs. There will also be an expansion of the current Merck Pd1 trials, for the IPI naive and refractory, 2 and 10 mg trials. I hope to have more detail and locations asap to post."

Check out the Melanoma International Site...  I will add updates here as well. - c

PS  Extremely thankful for the crossover clause!!!!  Good Luck.

Sunday, October 7, 2012

Playing with my latest toy!!!

Korean cast iron grill pan!
Apron ah lah B!!!!!
Here we go!
Concentration required.
Bok choy, ginger noodle soup, Korean beef.  Yummy!!!
Asian Cucumber Salad...crunchy and delicious!

Korean Beef
1.5 - 2 pound beef sirloin or flank steak, thinly sliced
1/3 cup soy sauce
2 1/2 T sugar
1/4 c chopped green onion
2 T minced garlic
1/2 t minced ginger
2 T sesame seeds
2 T sesame oil (optional)
1 T rice wine
1/2 t black pepper
Mix all ingredients and allow beef sliced to marinate covered in fridge for at least 1 hour.
Lightly oil Korean grill plate, then place directly on burner and preheat over med high heat.
Remove meat from marinade and quickly grill, until cooked through, about 2-3 min per side.
Asian Cucumber Salad
 Seedless Cucumber, thinly sliced (ribbons with mandolin or veggie peeler are nice if you want to go to the trouble!!!)
1/4 c seasoned rice vinegar
1/2 t sesame oil
2 T sesame seeds, toasted
1/4 c green onions, chopped
2 t grated ginger
Pinch of sugar
salt and pepper to taste
Mix dressing. Toss cucumbers in and chill at least 15 min, up to one hour.

Ode to Mrs. P.

I wouldn't say that I know Mrs. P. well.  But, I have known her for over 14 years, worked with her on community projects, and waved hello at least weekly.  She has always been incredibly nice and supportive of me, and even more so of my daughter.  I always thought of her as a good deal older than myself, but looking at things now, noting the age of her child, I realize she is probably very near my age, if older at all.  She just always seemed...well, matronly.  Her hair was always "done" in  a "set".  Or else, she was lamenting about how bad it looked, because she hadn't had a chance to roll it.  She has always been so supportive of my running, but when I would stop to chat as she piddled about in her yard, she would recall how she used to love running, but could no longer do such things because she had a knee injury (Which was real and significant, she had to have several surgeries to repair it.) and had "gained all this weight".  Her comments were always kind to others, but unfailingly self-critical.  I am extremely uncomfortable with self-deprecating comments and humor.  I have never found them funny.  Heavy comedians with "fat jokes".  Not funny.  Just disconcerting.  What are you to do when someone tells you they can't run because they are too fat?  Answer, "Well, that's for sure!"  Or lie, in the face of the obvious, "Oh, no!  You're just fine!"  Both seem grossly inappropriate.  So...I never knew what to say.  But, I knew exactly what I wanted.  I wanted Mrs. P. to be the person SHE wanted to be.  Whoever that was.  A person who may have weighed a bit too much and did little odd jobs in her yard with her hair "done".  A person who was active and participated in outdoor activities that she seemed so wistful for.  Either way, a woman who was proud and accepting of who she was.  But, how do you say that? How do you give that to someone?  How do you gain that for yourself?

Not long ago, I was returning to my neighborhood after a run, and was passed by a grey convertible, top down, nice looking lady with hair flying in the breeze driving, with a huge smile and big wave.  Who in the world?  That looked like Mrs. P.!!!  Sure, enough, as I turned down the street, there it was, the convertible, parked in her drive.  Later, I spoke with her briefly as she worked among the flowers in her yard. Slim and trim.  Younger.  Cheerful.  Happy.  No self-deprecating comments today.

Her transformation makes me smile each time I pass her house, no matter if I see her or not.  You GO, Mrs. P!!!!  Let your hair and your freak flag fly!  You are wonderful and I'm glad you know it!!!

So, for the rest of us:
Live like Mrs. P...let the top down...enjoy the breeze...let YOUR freak flag fly!-c

Saturday, October 6, 2012

The latest anti-PD1 trial info...

It has been reported that the Mayo Clinic in Jacksonville, Florida has slots in a trial with the Merck anti-PD1 product. There are openings for both prior ipi (Yervoy) use, as well as for patients who are ipi naive.  Call for an appointment or more information if you are interested!

Also in anti-PD1 news:  A BMS phase III anti-PD1 trial should be enrolling soon. That is great news, since they will have skipped the Phase II portion. The downside is that now, the trial will be randomized and the comparison treatment is yet to be announced. Addtionally, the trial is to be an international one with limited slots in comparison to the number of patients in need...but it is progress.  Will post any additonal information as I acquire it. - c