Wednesday, September 18, 2013

Cancer Care....for the upper crust only?????

Cancer Care Crisis

Check out the report above, addressing how difficult it is to get real, up-to-date cancer care where most Americans live. Not that any of this is news to those of us dealing with the problem. I live in a decent sized city....not a small town or out in the boonies! Yet there was no oncologist available to me who was particularly knowledgeable about melanoma and certainly there was no access to the newest or trial medications and treatments. I am only a two hour drive from Emory in Atlanta and the same from Sarah Cannon and Vanderbilt in Nashville. That is enough of a trek, but at the time of my diagnosis as well as the point at which I progressed to Stage IV, none of those facilities had treatments or trials that I could participate in. Now part of that demonstrates how far treatment for melanoma has come in the past two or three years. (Ipi was not even approved when I became Stage IV!) So, I've traveled to Moffitt in Tampa. Luckily, my sisters helped make those every other week trips happen for 6 months. I already worked Mon, Tue, and Wed at my job, so the Thursday/Friday schedule worked out. My husband was able to continue his full time work by virtue of the help of my sisters as I mentioned, but also because when he needed to go with me, he was able to move his hours into a combination of day and evening shifts, often working from 7 in the morning until midnight or even 2am!  With all of that...I realize I was VERY lucky. We could afford for me to make the trips. This included the car trip to Atlanta, airport parking fees, flight to Tampa, car rental, hotel, food, flight back to Atlanta, and drive home again! NONE of these things were paid for by my study or insurance.  We could afford to pay the copays for the REQUIRED scans, doctor visits, and to Moffitt.    It has not been cheap and you have to pay to play. The idea that participating in a clinical trial is free except for the price you pay in being a rattie with NO recourse should you die or grow three heads ( really do sign papers that neither the doctor, drug company, nor the hospital can be held liable no matter what happens to you over the course of the study!) is just not usually the case. The NIH, as I understand it, covers more things for their trial participants. There are groups and institutions that can help with travel expenses for cancer patients...but I figured there were folks who needed such assistance more than I. And, some institutions have places for patients and their families to stay when they need to be in town for treatment.....kind of like Ronald McDonald Houses for families of children who are hospitalized.

When I see the other patients at Moffitt, I don't see many minorities or obviously poor individuals. There are many elderly patients and I think Medicare does do a better job at covering cancer care than some private plans (and institutions are better at accepting what they will pay!). In fact, in my first meeting with Dr. Weber, when the magnitude of the financial costs that would be accrued was just beginning to dawn on me, I asked him if he noted that his patient population was skewed as they were unusually affluent compared to the greater community when he wrote up his reports. A lot of research notes demographics like that. He did admit that he realized it was a problem, but I've yet to see such documentation in his study outcomes (or in those of any of his oncologist peers, for that matter!).

I'm not sure what to do about my rant and this problem. Pati probably said it best...

"What is my life worth?" How much would you pay...for YOUR life? The life of a loved one? But....I also add...why must you pay for these services.....when you truly CANNOT? What are we to do with those in need, but without access? Pretend they do not exist? Pretend that we don't know they are there? Is this who America claims to be? Is this who we want to be?

I don't think so. We can do better. - c

Monday, September 16, 2013

Nivolumab (anti-PD1) trial....33 months later!

Latest stats:

121 months - since diagnosed with melanoma (That's over TEN years, folks!)
41 months - since being Stage IV
35 months - NED
33months - since the start of my BMS anti-PD1 (Nivolumab and peptide vaccine trial) at Moffitt, in Tampa, Florida

Had scans of neck, chest and pelvis as well as an MRI of my brain on the sixth.  All were pronounced free and clear by Bentie and the radiologists. It was the usual fun and games plus an emergency change of location when the scanner broke down at the site of our planned appointment. But, B prevailed and "made it work"! And as a reward, I got to have dinner with sweet friends.

The following week, it was off to Tampa once again, on Friday the 13th!!!, for my 3 month POST trial follow-up!

Here's the lowdown...

I am fine. Have had horrible mouth ulcers since before May 20th...which Dr. Weber noted and was impressed by on my June visit. They are resolving now thanks to the help of my dentist who treated me with Peridex, an antibacterial mouth wash as well as 24 hours worth of Valcyclovir (an anti-viral) on the chance that my lesions had developed a super infection with one or the other. We had contacted Weber as well and he suggested magic mouthwash again....but that just wasn't getting it! Within 48 hours I was MUCH better! We reported all this to Weber who was still impressed with the two residual ulcers under my tongue (as was my dentist when he saw me a week ago and told me, "Darlin! That hurts me just to look at it!" I told him it was that point....and was looking FABULOUS!!) All this discussion led to the revelation that I was the only patient out of 120 who had actually developed ulcers. Others had developed what he termed as mucositis with a sore, irritated mouth....but no ulcers. Then he started pondering which had helped....the antibacterial wash or the antiviral....clearly wishing we had done a culture and Tzanck stain before the meds....and Brent and I had thought of that...but I just wanted some relief....which Weber was fine with....but the dude is a researcher! That led him to start thinking about the five patients (of 120) who have developed shingles and whether my ulcers may be related to that...  In the end, I said if it was still ongoing in two weeks, I would have both tests done and we would go from there.

Other data:  No additional patients in my NED cohort have relapsed in the past 9 months!! And obviously, but can't say it enough...though with fingers crossed....that means that NONE of the 6 of us who had prior brain mets have relapsed at all!!!  Go little ratties! Go!

Final news:  So while the 83% response rate in my NED group is holding, and is obviously fabulous, I asked him: "When will the data from this cohort really be significant? Since we were NED it is hard to say when we would really have relapsed....though obviously the usual number for Stage IV folks to do that is in about 4-6 months...but still, accounting for individual differences....when do you think we have really proven something?"
His answer:  "When the median of the group reaches 48 months. The median is at about 22 months right now, though certainly we have you at 33 months and a few others that far along. We will be presenting the 24 month data. But the real break point will be when the median is 48 months after the start of the trial."  He went on to point out that he had never seen anyone relapse after making it 48 months, and thinks the 24 month data will have significance as well. Furthermore, he said that the data he already has, has convinced BMS to do a Phase III adjuvant trial and that the company is currently deciding what to use as the control....ipi, interferon, or something else.  Additionally, he is adding yet another arm to MY trial that will use ipi and Nivolumab concomitantly (NOT    sequentially) in NED patients. He is worried about significant side effects when giving these drugs together and I am not sure when slots will be open though it seemed to be in the next couple of months.

Guess that's about all we learned this go round. No scans for me for 6 months! Can hardly imagine!!

Hang in there, ratties! Love - c

Friday, September 6, 2013

Summer Reading

I have loved to read for as long as I can remember.  I was one of those weird kids who LOVED a summer reading assignment!  In fact, having been left with Ruthie at the local library each Thursday during the summer while my mother did her weekly shopping, the librarian quickly quit asking about whether this volume or that was really "appropriate" for me and bent all the rules as to how many books were allowed for weekly checkout, as I traveled through Alcott and Buck, Hemingway, Kipling, Michener, and Plath, Steinbeck and Stowe,  on to White, Woolfe, Wright, and Yeats!!!  I traveled to many places indeed!!!  Some of this summer's "travels" below.....

Daniel Deronda  By:  George Elliot
    While not particularly liking any single character, they have remained with me...true and real...each seeking answers.  The Jewish, pro-Zionist ideas were certainly out of character for a Victorian novel of its time.  That aspect, combined with its forward about the life of the author made me want to learn more about the woman behind George Elliot.

The Girl in the Blue Beret  By:  Bobbie Ann Mason
    Readable, easy book.  Inspired by the real life experiences of her father-in-law, an American fighter pilot, shot down in occupied Europe during WWII.  Rosie got to hear the author speak at UT and came away with this book.  The inscription was a true gift, Roo!  Thank you.

A Voyage Long and Strange  By:  Tony Horwitz
    Recommended to me by Rosie, one of the best books I have read in a while!  Horwitz uses his journalistic skills, as well as his incredible gift as a story teller, to weave an entertaining and informative tale of his epic trek to learn who REALLY 'discovered' America.  From Vikings, to Conquistadors, French voyageurs, and yes...the English, he notes how and where they began as well as where they landed (then and now) and what they found when they got there.

A Land More Kind than Home  By:  Wiley Cash
    The first book by this fairly young author, rings true and keeps you reading.  Anyone raised with those who believed (or perhaps more importantly, tried to make OTHERS believe) they could handle snakes and simultaneously experience God's protection will recognize these characters...from home.

Let's Pretend this Never Happened (A Mostly True Memoir) By:  Jenny Lawson
    For me, though certain sections were very funny (especially when recounting her time working in HR), this tale didn't quite live up to its hype.  When you lived the childhood I had, it takes more than a few dead animals in Texas to impress.

The Curious Incident of the Dog in the Night-Time  By:  Mark Haddon
    Very well done.  The story is told incredibly consistently and believably by Christopher, a 15 year old boy, who describes himself as a "mathematician with some behavior difficulties."  It catalogs his progression in his own life through a series of events that unfold when he discovers a neighbor's dog, dead, stabbed through with a garden pitch fork, one night.  For me, it was really a treatise on what "behavioral difficulties" are and aren't.  And perhaps even more, a thought provoking work on "truth". 

From Anthropometry to Genetics, Reflections of a Pacific Island Fieldworker  By:  Jonathan Friedlaender, as told to Joanna Radin
     Stories of his very own research in the Pacific Islands, with native peoples, my dear friend Jonathan, tells of his time in the field and how he developed the research at home.  Apart from the real contribution to our knowledge base of how people came to populate this portion of the world (much like the questions addressed in Diamond's, Guns, Germs, and Steel), it brings up many thoughts about how "powerful nations" are viewed by those with less power and how that appearance affects us as a group and as individuals when we travel.  It also makes you think about who really does "own" research, both the data collected as well as the samples themselves.  Well done, Buddy.  To a life well lived!  Would still like to know more about how you came to rock those sarongs!!!

The Complete Short Stories of Somerset Maugham, Number 1, East and West
    The man could tell a story!!!  Partly inspired to re-read because of Jonathan's tales of the Pacific Islands....partly because they are consummately readable stories that I read and re-read periodically...I traveled (mentally!) to all the rainy, over heated, Pacific Islands, feeling as though I was really there with all of Maugham's flawed humanity beside me, just as I always do.  My sweet Granny gave me this two volume set when I was in my early teens.  I've often wondered;  had she known the vibrant, but sordid tales contained within, would she have given it to me?  What I do know, is that she thought they were 'important' volumes with a grand vocabulary....and she believed that I could understand them.  Thanks, Granny.

Seven Pillars of Wisdom (A Triumph)  By:  T.E. Lawrence
    Oh, my.  Thank God and Greyhound she's gone!!!  While parts of Lawrence's own tale were vivid and inspiring with incredible descriptions of the desert and the tribes who inhabited it, the machismo, self flagellating, slightly weird descriptions of male love, and endless war can make a girl tired!  I found the story of Gertrude Bell, Queen of the Desert, much better written and readable.

The Flavor Bible  By:  Karen Page and Andrew Dornenburg
    While it may sound strange to some, I love to READ cookbooks. I love the delicious recipes, but perhaps even more, the way they allow me to experience other places and cultures.  Last count, I had 111...though I'm sure Bentie has indulged my penchant for books and cooking more than once since then.  In fact, he gave me this volume for my birthday.  Sorry, Bentie....but a terrible disappointment!!!   It is large and slick with scattered beautiful photos.  But, mostly it is simply an alphabetical list of foods followed by list of foods that are thought to go with them.  There are random anecdotes from chefs who were apparently consulted.  But....  Well, I guess if you have "X" in your larder and no idea what to cook with it.....I suppose you could just look it up.  Though, why would you have "X" if you didn't know what to do with it?  (Unless you were married to Bent!) And, once you do look it up, you will have only found the name of another ingredient....not what to do next!

The Flavor Thesaurus  By:  Niki Segnit
    Now this is more like it!  B gave me this one for our anniversary....inscribed:  "I think we are the best pairing!"  Such a sweetie!!!  Anyhow, very readable and very helpful!!!!  Written by a fairly well traveled Brit, who is well versed in cooks and their books.  Each topic ingredient is followed with a list of foods that would pair well with it...but each pairing includes a paragraph about where the origins of the combo arises with mini recipes and hints about how to actually deal with the ingredients!  She even has the decency to admit that some pairings, while popular with others, are not to her taste.  Of beets in chocolate cake she reports:  "....the cocoa almost entirely overwhelms the beet flavor leaving nothing but a hint of its earthiness, which makes the cake taste like a cheap chocolate cake that's been dropped in a flowerbed.  And the raw cake mixture was so unpleasant that no one wanted to scrape the bowl clean.  Case closed, at least in my kitchen."

The Taste of the Fire, The Story of the Tudor Kitchens at Hampton Court Palace
   Now THAT was cooking!!!  Constructed in 1530 and used by the royal family until 1737, Henry VIII's kitchens covered 36,000 square feet for food production and storage, requiring more than 50 rooms, and fed over 600 people twice daily!  A book from the royal palace that Rosie brought back from her visit, it is amazing to think of the work, organization, and quantities such an undertaking required with no modern methods. Manners were king.  Scraps went to the poor. Saffron, mace, and cinnamon were used in abundance.  And only one woman worked in the kitchen, where she made the king's "puddings".

Fodor's Spain, 2013

Rick Steves' SPAIN 2013 

As Fred would say, "Yeppers!  Read those too!!!"  More on those later!  Happy all sorts of places!!!! - c