Oh, the people you'll meet...

As I drove to work today, the sun was rising behind the ridge, smearing great rose colored streaks across a sky filled with fat, cottony, pink and purple clouds.  Thinking.  Wishing.  Missing all the amazing people I've "met" who can no longer share such a sky with me....and fervently dreaming that somehow....they could.  Never have I met such a kind, generous, life loving, beautifully positive group.  Andy. Randi. Mike Brockey. Hillary Quinn Kind. Meagan MacPhee. Shellebrownies' Don. 9TS. Jillian. Eric of EricnJill. Gavin Snow. The words and videos that these amazing spirits and their loved ones have so generously shared with all of us provides enough inspiration and life lessons to cure most of the world's ills, if we would but listen.

Yet, some comments have hurt my heart of late. They are meant with kindness, I know. Or, intended as words of encouragement by those who don't know what else to say. At times spoken, perhaps, out of fear, by those in the midst of their own battles.  It is always something like:  "If you stay positive, you can beat this."  OR: "People with upbeat attitudes live longer." 

Most people who know me would never suppose I am anything but positive and optimistic. Not that I am hiding the moments when I'm down.  I simply choose to be positive and hopeful most of the time.  I have even been berated for being ridiculously "hopeful" in the face of my diagnosis.  My husband's pet name for me is "Bubbles" due to my [supposed] ebullient personality.  But, my admitted over sensitivity to these remarks hinges on this....when you say things like the phrases I noted....it could be implied that those who lost their battle with melanoma must have somehow lost their spark, their positivity, their good, fighting attitude.  And, I KNOW that is just not the case.

As much as we would like to truly believe that positivity can overcome anything and some studies demonstrate a beneficial effect from the "laughter is the best medicine" sort of thing.  Many books and studies out there prove otherwise. David Rakoff,  the incredibly funny, journalist and writer (1964-2012) talks about many of them in his book "Half Empty".  He experienced 18 months of chemo and radiation at the age of 22 when diagnosed with Hodgkin's disease, only to have a tumor that eventually took his life recur in his shoulder and metastasize.  Perhaps, he said it best in an interview with John Stewart.  "There was a study that showed that the long term mortality of people with lousy attitudes is no different from people with great attitudes.  So, you can be the worst bastard on the ward and you will not die at any greater rate than the other people.  People will simply be gladder when you do!"

I don't intend to give up on hope or positivity.  Heck!  I don't want make myself and all the people around me feel miserable!  I guess this is my long, ranting way of saying I begrudge the implication by anyone, that these amazing people were any less determined, confident, positive, hopeful, fighters than any of those among us just because they are no longer here.

Oh, the people I was lucky enough to "meet".  I am proud to have known you all.  You touched my heart. You taught me much.

I will always remember.

I will try to live my life with as bright a spirit as each of you. - c

Interferon vs Pegylated

Since the data on interferon has come in as somewhat underwhelming, you don't have to read my posts long to realize I am not a big fan.  However, since many of us dealing with melanoma have little other choice...and in my desire to post all information fairly....this study came to my attention and does have some potential bright spots.  For what it's worth:

From:  Expert Review of Anticancer Therapy, November 12, 2012

An update on pegylated IFN-a2b for the adjuvant treatment of melanoma

Agarwala SS.  St Luke's Cancer Center, Bethlehem, PA

Abstract:
For patients with localized melanoma, excision of the primary tumor, including lymphadenectomy for nodal metastasis, is standard treatment.  However, patients with large primary tumors (stage IIB and IIC) or stage III melanoma have a relatively poor prognosis owing to the high risk of recurrence. High-dose IFN-a2b and pegylated IFN-a2b (PEG-IFN-a2b) are the only approved options for adjuvant therapy of Stage III melanoma, but the lack of comparative data has led to considerable confusion in choosing between these options. In this article, current evidence regarding the pharmacokinetics, efficacy, safety and tolerability of adjuvant PEG-IFN-a2b in patients with melanoma is reviewed, with frequent references to and comparisons with data using IFN-a2b. Particular focus is given to the pharmacokinetic differences between IFN-a2b and PEG-IFN-a2b and their implications for the treatment of high-risk patients.  In addition, emerging evidence suggests that PEG-IFN-a2b therapy may provide clinically significant overall survival benefit for selected high-risk patients.

Best wishes - c

"....maybe if we do enough things right, the wrong will get better..."

Oona strikes again.....let me repeat her beautiful phrase, completely stolen by me....

"...maybe if we do enough things right, the wrong will get better..." 

The lady has a way with words, at just the perfect time. Innocents die each day.  From hunger. From bombs. From men with guns.  Here.  The war torn Middle East.  Yes, each case is different.  Yes, each example has its own complicated history.  But, it is wrong. All of it.  Every time. Every way.

But, I promise to try...to do things right.  And, I know many others who do, too. 

"...maybe if we do enough things right, the wrong will get better..."

Thanks, Oona. - c

Itchy, Stinky, Achy, and Tired....

...the Four Horsemen of Anti-PD1!!!  Well, do what you will.  Just finished an INSANITY workout with Shaun T!!!!  Yeah, yeah.....it was only the Cardio Recovery set....and yes, I did feel like I was going to throw up once...but...  I DID IT!!!  So, there! - c

New Trials for Melanoma

 New Anti-PD1 adjunctive trial:
According to Dr. Weber, he was "just" notified of a new anti-PD1 adjunctive trial set to start.  (These are the trials that I feel are essential for prevention of the later development of non-resectable melanoma, but have little availability.) I am not sure if this is for the BMS or Merck product, but patients will be given anti-PD1 or placebo (nothing) every 2 weeks until progression.  His main worry in trials like this (a couple more to follow) is related to accumulated side effects.  When talking about NED patients, you could be dealing with years before progression, which is great!!!....but how much drug can a body take?!!!!

BMS 936558 vs Dacarbazine or Carboplatin and Paclitaxel (investigator's choice) Phase 3 trial:
To run (?) 23 months, started in November 2012, with BMS anti-PD1 given every 2 weeks at 3mg/kg, while the other arm is given their drug every 3 weeks in patients with Stage III/IV unresectable melanoma who progressed during or after 2 or fewer treatment regimens (including failing ipi).  Exclusions include:  prior BMS anti-PD1, corticosteriods 14 days prior trial, autoimmune disease, active brain mets, ocular mel, prior anti-PD1, anti-PD-L1, or anti-PD-L2.  Search NCT01721746 for locations.

New Phase I/II trial for Stage III/IV melanoma unresected:
An adenovirus vector engineered to express hIL-12 (INXN-2001) is injected into the tumor directly while an activator ligand (INXN-1001) is taken orally in 4 cohorts of 5, 20, 100, and 160mg/kg in 7 daily doses per study cycle with a max of 6 cycles. One intratumoral injection will be done per study cycle for a max of 6 cycles.  Exclusions:  No treatment drugs 28 days prior. If drug was ipi, 90 days of a washout is needed.  If on prior anti-PD1 an evaluation regarding when and if participation will be allowed will be made by the "medical monitor".  No occular melanoma. No symptomatic brain mets. No autoimmune disease requiring steroids.  Search NCT01397708 for more info.  NOTE:  The idea here is that the drug injected into the tumor will increase the immune response and possibly decrease the blood flow available to the tumor while the oral drug will, in theory, activate the immune response as well.

NOTES:
This is just the gist of these trials.  Search ClinicalTrials.gov for more and better information.  Make your oncologist get busy on your behalf!

And, finally, when talking about some of these trial options with Dr. Weber, he acknowledged that had ipi or anti-PD1 had been discovered first....Dacarbazine would never have attained FDA approval...yet, we continue to use it.  Incredible.

Best of luck to each of you. - c

BMS anti-PD1 trial - 24months done...6 to go! An update on my cohort:

It is hard to realize that I have been going to and from Tampa every 2 weeks for 6 months and then every 3 months for the past year and a half!!! But....I have.  I return in March and then in June for the final two infusions assuming that scans remain clear. Despite some posts on various melanoma forums with patients alluding to continuing the meds indefinitely....that is NOT going to happen.  Dr. Weber let us know that, as I suspected, BMS is NOT going to supply the drug for patients in this study any longer than the prescribed 30 months.  I was not keen on doing that anyway...but that is the bottom line. When we asked about post trial follow-up, Weber said that he would like to continue to follow patients in this study every 3-6 months if possible, to collect data, to see what happens to us next, help us with side effects, etc.  Of course, there is no assistance offered (as has been the case all along) for fees related to travel/flights, accommodations, etc.  So...I'm not sure.  I think information over time is essential for strides toward a cure for melanoma.  It just amazes me that drug companies have so little concern or assistance for all of those things.  My R & B management team (that would be Ruthie and Brent) have decided I will be going every 6 months...but....we'll see about that.  There's another 6 months to get through before we worry about that business!!!

Stage III/IV, resected, NED arm of the MDX 1106/BMS 936558 trial with 6 months of  vaccines at Moffitt....latest intel:
N = 31.  Since start of trial, 2 patients have died and 6 have progressed.
According to Dr. Weber on this visit, "only one other patient has significant vitiligo". (He noted that he may look at the cells collected during my leukophoresis to try to ascertain whether or not there had been a development of antibodies against melanocytes.  In theory, this would mean that my cells are killing anything melanocyte related....from the basic pigment in my skin...to melanoma.  And, if that is the case....it would be a desirable result to try to attain in all patients.)
Again, according to Weber, patients in this cohort with no treatment, experience progression within 6-8 months, while this group is now more than a year out with a rate of progression that is much decreased.
He notes that he would like to follow patients after the study is "completed", but no more drugs will be given and there is not a particular protocol (or assistance) for that.
Final results of this study will not be tallied until some time in 2014, however, there are plans for the initial data to be presented at ASCO in Chicago in June 2013.

Other news:
The Merck anti-PD1 product may be performing even a little better, but the numbers from its studies thus far are small and time will tell if its rates will hold.
N = more than 80 in the "nonresectable" arm of my same trial, and while results were deemed positive for that group as well, I have no new specific numbers to report other than a "30% response rate" per Dr. Weber.

From one rattie to another....hang in there.  Long tails are handy! - c

Dimensions of melanoma

112 months - since being diagnosed with melanoma.

32 months - Stage IV melanoma

26 months - NED

24 months - in anti-PD1 trial at Moffitt in Tampa

Yes, my scans last week remained clear/unchanged, with no evidence of disease. Brent and I are currently ensconsed in our La Quinta home away from home after the requisite drive to Atlanta, flight to Tampa, and Alamo rental. We had a fun dinner at the Taco Bus! Pretty yummy!  Check it out if you're in town.  Best get some rest. We get to start our Moffitt fun and games at 0730 tomorrow. Wouldn't want to miss the butt crack of dawn in Tampa Town. - c

My Life With Cancer

 My life with cancer began almost 30 years ago.  In my twenties I worked as a nurse at our local Children's Hospital.  While most patients in this area, at that time, were managed by St. Jude's in Memphis...getting their assessments, plans, surgeries, inductions, etc., initiated there...our hospital  provided some maintenance medications and managed extraneous illnesses and sepsis for those little patients when they needed it in a hurry and/or to help avoid one more trip away from home for those families.  Being good at IV starts (some patients had ports and some did not) I often helped in their care.  I purchased a bag of dill pickles from the grill in the kitchen downstairs before every shift when I knew Michael was on the floor.  He was an incredibly bright, and a little bit bad, completely bald fellow of 6, whose diminutive size made those unaware think he was a child of around 3.  I knew better.  And once he started talking...they did too. I also knew he was probably smarter than I was, and certainly had the "old soul" wisdom that children in his position seem to gain.  Despite his mouth ulcers, he loved sucking on the dill pickles I would bring....often threatening me with a "knuckle sam-ich!!!" if I pretended not to have them.

I administered vincristine, methotrexate, adriamycin, and cisplatin.  Those old drugs with their horrible side effects frightened me. I didn't feel I knew enough to give precious little bodies such vicious poisons.  I worked hard to learn more and take the best care I could of my little charges.

I spent hours bent over crib beds helping doctors put life saving lines in babies with various cancers, gave evil cocktails of antibiotics and anti-fungals to children with super-infections secondary to their immunocompromised conditions after chemo. Once I stayed at the hospital over 24 hours in order to assist in hospice care for a family watching their 4 year old little girl die after multiple surgeries, including a pelvic exoneration and innumerable rounds of chemo, due to a Wilms tumor that had ravaged her abdominal cavity.  Sadly, the parents had suffered almost more than they could endure.  They could not agree between them, on the course of action to take during their child's last hours.  Each vacillating almost as the wind blew, between the desire for a full code and to let her pass in peace.  As one of the few nurses there (why me I'll never know) who could keep them calm, I was asked to stay on until she passed.  She was on a continuous morphine drip.  In between, when her heart rate would rise and she would moan in pain through her unconscious state, I had orders for various other narcotics to administer rectally and as an IV push.  The medications I administered through that long day and night and into the early morning again were more than enough to render an adult unconscious many times over. I would push them slowly, longing for peaceful, calm respirations, that let me know I had eased her pain - Simultaneously fearful that my drugs would stop them completely, while almost wishing that they would.  She finally died peacefully in the arms of her parents, united in their love for her once more.  I have thought of them many times over the years and hope that they have found peace.

And then came melanoma.  Who knew?  Since then I have experienced much of what the film below addresses.  Excisions, biopsies, surgeries, radiation, PET scans, CT scans, MRI's, various types of tumor testing.  Even the latest in the feeble, yet somehow resourceful and inspiring human battle against cancer....immunotherapy.....as a rattie in my anti-PD1 trial.  Attempting to prevent melanoma from hiding itself in its protective shroud and allow my immune system to dispatch it....for good.  It is a bit long, but I think well worth your time.  Click on the link below to see a history of the past 50 years on the front lines with cancer.

The Enemy Within

The film brought so many thoughts and emotions to the surface for me.  All my patients.  So many more than I can begin to mention here.  The pretty teen with Hodgkins and her bright pink and blue wigs.  My peculiar perspective having lived on both sides of the fence. The incredibly brilliant doctors and scientists who bet their careers on their beliefs and worked relentlessly to prove their hunch...to the benefit of us all.  The strange position I have found myself in over the past 3-4 months:  Via some strange crossed wires within the machine that is marketing and companies who know more about you than you think they possibly could....I have become the recipient of an onslaught of material and advertising for all sorts of melanoma drugs that AS A PROVIDER (not patient) I can administer to my patients.  Something, as a Pediatric Nurse Practitioner in a primary care setting, I am not even qualified to do!!!!  And there's Patti, representing for melanoma in the film.  I think of her daily.  Wishing her and hers my very best.

So....there it is.  My life with cancer. Strangely tied to amazing children, their brave families, researchers I have never met, current experts in the field whose names flow off my tongue as though they live next door, incredible people whose strength and bravery I admire and seem like friends, though most of us will never meet. What tangled webs we weave.  How much we have yet to learn. - c

SYLATRON, IPI, AND JONATHAN

Fingers and toes crossed that this trial combo (ipilimumab [ipi/yervoy] and pegalated interferon) will bring the help he needs!  Hang in there, J!!! - c