Monday, July 2, 2012


Words are powerful things, they have the power to convey intense feelings and to mark periods of profound significance.  I've recently been pondering the meaning of a new favorite word - remission.  Definition:  A period during which symptoms of disease are reduced (partial remission) or disappear (complete remission).  Disappearance of all disease is complete remission; reduction tumor size by more than 50 percent is considered partial remission.
   As of last week it was confirmed that my tumor load continues to go down, over 60% and probably closer to 75% and slowly shrinking.  My fantastic results from last restaging at Moffitt (scans to check my tumor progress) have been confirmed.  Wait a minute - I think I smell some success around here!  Not complete remission or NED (no evidence of disease) but as close to that as I'm likely to ever see.  Some of my tumors have turned into hard little masses that are floating around my innards like little dead soldiers on a battlefield.  They are not bothering me, and maybe they will scare off any other cancer that might start getting ideas.  My little tokens of victory.
   The BRAF/MEK combination is working - has worked - and I'll stay on it indefinitely.  Side effects are minimal, prospects are good.  I get sick sometimes from the meds but I know it is the meds and not the cancer making me sick and that helps me tough it out.
   So let me take the time here to thank all of you for following my journey.  I acknowledge it is not over yet - there is no cure for cancer.  My remission may not last, no one has been on this drug combo for over a year so we are in unchartered territory in terms of long term results.  I could start rejecting the medication.  I could get hit by a bus tomorrow or abducted by aliens.  I'll just group all of that into a pile of things I don't want to happen to me and move on with my amazing life.
   I remain sad only over the intimate knowledge that I now have of the suffering of others with this disease.  I know the fear, the humiliation, the pain and the loss that invade the lives of cancer patients.  Multiply that times 20 million and it is almost soul crushing.  Dickinson said "Success is counted sweetest by those who never succeed" and its those that take the sweetness somewhat out of it for me.  But I have survived and I will continue to fight for those who cannot.
   I'm not sure what I'm supposed to call myself now, "cancer survivor" or "living with cancer" or something else.  I'm supposed to be creating a "new normal" and start dealing with the survivor guilt I feel for those fellow warriors that have fallen in the past year.  Those unfortunate enough to not have the BRAF mutation or good health insurance or a lucky choice of oncologist.  I'm supposed to find meaning in all of this, but all I want to do is breathe, remain calm and carry on.
But right now I will heartily enjoy sending a very loud and very intense "fuck you" to cancer.  You picked the wrong body to invade this time and I have thoroughly enjoyed watching you die.  To all of cancer out there I repeat one thing very clear that has been on my lips since day one, the mantra I repeated over and over again those long nights in the hospital, the words I said a million times waiting for the doctor to come in the room with results or watching chemo crawl through an IV into my arm - not me, not now.  No way, cancer.  Not me.  Not now.

Friday, June 8, 2012

Bad news, more good news

Bad news first - another fellow fighter has fallen.  Jake, author of the excellent blog Jake's Take - succumbed to the disease last week.  Jake and I both went through the TIL procedure around the same time and both had negative results and have been going through many of the same things over the past year.  My thoughts go out to his wife, children and family.  Jake set the bar for humor, strength and humility.

For the good news - continued success with the combination therapy.  News of this has hit the press from the ASCO conference.

Glaxo Melanoma Drugs Beat Standard Chemotherapy In Study

BLOOMBERG - By Makiko Kitamura and Robert Langreth - Jun 4, 2012 12:00 AM ET

Two experimental GlaxoSmithKline Plc (GSK) drugs that block genes tied to lethal skin cancer worked better than chemotherapy in studies that tested them individually, paving the way for final-phase trials on their use together.
About 80 percent of patients with advanced melanoma given Glaxo’s trametinib were alive after six months, compared with 67 percent on chemotherapy used as a standard treatment. Separately, Glaxo’s dabrafenib delayed disease progression by 5.1 months, compared with 2.7 months for chemotherapy. The Glaxo-funded research is being reported today at the American Society of Clinical Oncology meeting in Chicago.
The individual research followed an early-stage study in 77 patients that found the drugs used together resulted in fewer skin lesions than previously reported with Roche Holding AG (ROG)’s Zelboraf, a therapy cleared last year that targets a mutant gene found in half of advanced melanoma cases. Glaxo has begun two final-stage trials on the combo therapy, the company said.
The combination “is where we have the most enthusiasm right now,” said Keith Flaherty, director for developmental cancer therapeutics at Massachusetts General Hospital in Boston, and an author on the trametinib study. It “looks better in terms of efficacy, and better in terms of safety.”
The U.S. will have an estimated 76,250 new cases of melanoma this year, with 9,180 deaths, according to the National Cancer Institute. While patients with early-stage disease respond well to treatment, the five-year survival rate for those with cancer that has spread is 15 percent, according to the American Cancer Society.
Billion-Dollar Drugs
Approval of the two Glaxo drugs could generate as much as 1.5 billion pounds ($2.35 billion) in 2020, said Andrew Baum, a London-based analyst at Citigroup Inc., said in a note to investors last week. The company will seek regulatory approval of both compounds individually later this year.
In an interview, Paolo Paoletti, president of the oncology unit for London-based Glaxo, said his company has begun two late-stage trials of the combination therapy in advanced skin cancer. One will compare the combination to dabrafenib alone; the other compares the combo to Roche’s Zelboraf.
“We are rolling; the interest is so great the enrollment will be very quick,” said Paoletti. If the benefits of teaming the two drugs hold up, “it is a transformation. It will be a new standard of care.”
Zelboraf and Glaxo’s dabrafenib work by blocking BRAF, a mutant gene that spurs cancer cell growth in about half of melanoma patients. Zelboraf was approved in the U.S. in August 2011. Trametinib is designed to thwart a related protein called MEK that helps tumors resist an assault on BRAF.
‘Gold Standard’
With few side effects, the combination therapy could become the industry “gold standard” in treating melanoma patients with the BRAF mutation as early as 2014, CitiGroup’s Baum said.
One downside of the BRAF-blocking drugs is that using them may activate certain growth pathways in healthy cells, leading to non-melanoma skin cancers. Adding the MEK drug can block the formation of these skin lesions, it turns out, Flaherty said.
Finding out that a second drug can cancel out the side effects of the first “was the cool part,” Glaxo’s Paoletti said. “Usually, when you combine two drugs they increase toxicity.”
Glaxo’s move into combination trials was “so gutsy,” said George Demetri, an oncologist at Dana Farber Cancer-Institute in Boston. “Glaxo did a spectacular job.” Demetri said he was a scientific adviser for one of Roche’s partners in the development of Zelboraf.

Friday, May 4, 2012

Good news! Good news! I repeat, Good news!

actual microscopic image of my BRAF+
MEK being delivered at a cellular level
(my white blood cells wear body armor!)
I was just restaged last weeks after six weeks in the clinical trial on the combination targeted therapies of BRAF and MEK.  We knew the results would be good because all my palpable (fancy word for things you can feel with your fingers) tumors have gone away so there has definitely been some level of progress.  Now, I have not had any progress against the disease since I was diagnosed over a year ago.  None.  Every month or six-week interval has shown disease progression at varying rates, despite the very aggressive treatments we have tried.  These results from Moffitt would show for the first time that my level of disease has decreased, that I have become more healthy and less sick.  Level of disease can be measured by tumor load, and Moffitt adds the largest dimension of a select group of discrete, easily identifiable tumors.  For me, that's six tumors around my liver, in my lungs and upper torso.  When compared with the imaging study from the end of January, my tumor load has shrunk 61% in ten weeks!  The actual results are higher since the "before" imaging was when I was still on Temodar chemotherapy pills and before the significant cancer growth in February that almost did me in.  At that point, as the Marine saying goes, the enemy has us surrounded - and we have them just where we want them.  Then "boom"!
    Even better news was that my side effects from the targeted therapy have seemed to taper off at the lower dose (100mg instead of 150mg).  Now the side effects are minimal and I'm not at risk of being removed from the study.  And the rigor of my total treatment involves taking three pills in the morning and two in the evening and a day at Moffitt every month.  No wonder this combo therapy has become - as one doctor put it - the "phenom" in melanoma.  A low impact, quick acting, high response therapy for a disease that had almost no therapies with any one of those features.
     There is still the possibility the drugs will stop working at some point of course, but no one knows yet.  The good news is that the targeted therapies are coming on line as fast as the researchers can identify the specific genetic pathways that allow the cancer cells to regenerate.  As well, testing on combinations of targeted therapies with immunological therapies are just being started which promise to both knock-out cancer and keep it from coming back.  Its all very exciting and gives me hope of living a long and natural life, thanks to the miracles of science.  So hug someone in a lab coat today, and tell them thanks for me.
     While awesome news, we are trying to just live in the moment.  We are enjoying not having to deal with this on a daily basis.  I have some breathing room, some time, and I'm going to take full advantage of it.  We've restarted planning a summer vacation, I've committed to some new bike rides for the end of summer as I had to miss the ones I planned on this spring.  I'm setting goals and setting aside excuses.
     After holding the line for a year - my own little Battle of Britain - we've struck a mighty blow to cancer.  We've reduce it to less than half its former strength and the math for the next six weeks looks bad for cancer as well.  I am taking from it its ability to influence my daily life, relegating it to the far off battlefield.  And I have taken from it a renewed appreciation for these blue skies, for now void of black birds and storm clouds.