Thursday, April 30, 2015

Across Five Aprils

I made it.  Across Five Aprils.  Having had SRS to a brain tumor April 27 and right upper lobectomy to my lung days later on April 30, 2010.  As promised, ready for our book club discussion. The back story:

Across Four Aprils: A melanoma perspective

Across Two Aprils

Worst part is over

SRS done - home again

Across Five Aprils, a historical novel by Irene Hunt, tells of joy and tears, love and hate, broken hearts and survival, as a family in the border state of Illinois is torn apart during the Civil War:  April 1861 through April of 1865.  Initially, I mentally attached my journey with melanoma and this blog effort to the title due to its matching chronology, the struggle both families endured, the beauty of the writing that captured my heart so many years ago, and the incredible, almost enchanted loveliness, April brings to Appalachia.  However, over the years, I've come to realize the tales are even more connected.  It seems that all the suffering during the Civil War, in which an unimaginable number, 620,000 American soldiers (2% of the population) died, was the only way to abolish the horror that was slavery in our country.  In 2015, it is predicted that 73,870 new melanoma patients will be diagnosed and about 10,000 of them will die. As such, MY personal, internal civil war and my family's struggle, has been necessary in order to banish melanoma from my life, at least for the past 5 years.  I hope that as more and more melanoma soldiers like myself march on and better treatments and treatment combinations are developed, the tide will turn.  It is also my hope that we recognize the value of those 620,000 dead Americans and their families who suffered through the loss, so that brutality and loss of life due to prejudice and fear, with riots and destruction as a response, in cities like Oakland, Los Angeles, New York, and Baltimore - will be no more.

May the beauty of April be with you in the coming year.  Love - c

Monday, April 27, 2015

On loss, domestic violence, Melissa and Grayden...

A community, an office, multiple families....experienced loss today.  Sadly, I don't mean Nepal and its earthquake.  Though if human losses there number only 4,000 souls, I suspect it will be a miracle.  But, no.  I refer to a loss much smaller.  Much greater.  More frequent.  More horrific.  The loss of women and their children from domestic violence.  A nightmare in life. A tragedy in death.  In retrospect, an event as clear and as relentless as an oncoming hurricane.  Mac Truck.  Earthquake.  A famine.  A plague. Why do we, as a society, allow these men guns?  Why do we fail to take the actions we need to take?  Why do restraining orders require a meeting?  Later?  A separate appointment?  After local authorities have already documented the terrible, most recent event?  When we, and law enforcement, and life, and the administrator of every women's shelter KNOW the tragic, repetitive, relentless result?  Why?

"The real hell of this is that you're going to get through it.  Like a starfish, the heart endures its amputation."  Gail Caldwell, From - Let's Take the Long Way Home

Life is fleeting.  That is all I know.   Make sure those you love know you do.  Melissa and Grayden would agree.   - c

Sunday, April 26, 2015

BRAFi better when combined with or after immunotherapy and surgery!!!

Response to BRAF inhibition in melanoma is enhanced when combined with immune checkpoint blockade.  Cooper, Juneja, Sage, et al.  Cancer Immunology Research.  April 2015.

"BRAF targeted therapy results in objective responses in the majority of patients, however responses are short lived (approx - 6 months).  In contrast, immunotherapy results in lower response rates, but responses tend to be more durable. BRAF inhibition results in a more favorable tumor microenvironment in patients, with an increase in CD8+ T cell infiltrates and a decrease in immunosuppressive cytokines.  However, there is also increased expression of the immunomodulatory molecule PD-L1, which may contribute to resistance."  So, with that info these peeps figured that BRAF therapy may play well with the PD-1 pathway to get rid of tumors.  They produced mice with BRAF positive melanoma and found that sure enough BRAF inhibition increased intratumoral CD8+ T cell density and cytokine production like it does in people.  When they gave the mice anti-PD1 or anti-PD-L1 WITH the BRAF inhibitors the got an "enhanced response, significantly prolonging survival and slowing tumor growth, as well as significantly increasing the number and activity of tumor infiltrating lymphocytes....demonstrating synergy between combined BRAF-targeted therapy and immune checkpoint blockade."

Durable complete responses off all treatment in patients with metastatic malignant melanoma after sequential immunotherapy followed by a finite course of BRAF inhibitor therapy.  Wyluda, Cheng, Schell, et al.  Cancer Biol Ther.  March 2015.

"We report 3 cases of complete response in patients with BRAF-mutated metastatic melanoma who were initially treated unsuccessfully with sequential immunotherapies (HD IL2 followed by ipi with or without concurrent radiation).  After progression during or post immunotherapy, these patients were given BRAFi and developed complete responses.  Based on the concomitant presence of autoimmune manifestations (vitiligo and hypophysitis), we postulated that there was a synergistic effect between the prior immune therapy and the BRAFi.  Accordingly, the inhibitors were gradually weaned off beginning at 3 months and were stopped completely at 9-12 months.  The 3 patients remain well and in CR off all therapy at up to 15 months with radiographic follow-up....with high levels of non-T-regulatory CD4 positive effector phenotype T cells, which persisted after completion of therapy."

Successful (neo)adjuvant BRAF-targeted theapy in patient with locally advanced BRAF V600E mutant melanoma.  Seremet, Suppa, Trepant, et al.  Melanoma Research. January 2015.

62 year old patient, dx'd with Stage IIIB melanoma with large, inoperable, primary lesion surrounded by ~25 secondary satellite and intransit lesions.  She started on 960 mg daily vemurafenib.  Stopped and resumed at 720 mg twice daily.  Was then placed on combined dabrafenib and trametinib to decrease side effects.  Successive exams showed gradual reduction in the thickness of the lesion.  After about 5 months of therapy, surgery was performed and the path analysis showed almost complete regression of tumor cells.  Dabrafenib/trametinib therapy was continued only 3 months after surgery and stopped at the patient's request.  She remains in complete remission 8 months after surgery.

My thoughts:
1.  Really heartening to hear that BRAF inhibitors can improve outcomes in these patients.
2.  Especially so, when these responses are already more durable than is typically seen when BRAF inhibitors are given alone AND responses have continued with patients OFF the meds!!!
3.  Combining BRAFi and immunotherapy can cause real problems with side effects.
4.  Like the rest of us, it remains to be seen how durable these "durable" responses will be.

Go, ratties!  GO! - c

Thursday, April 23, 2015

Sping in Charleston is...

Bigger.  Brighter.  Bolder.  Even, a little badder!!!  Than just about anywhere else!


Thanks for an early Spring and a wonderful trip, Bentie!!! - c

Monday, April 20, 2015

Anti-PD1 (Opdivo/Nivo and Keytruda/Pembro) effective in treating lung cancer! ($$$$$$$$$$$$$...)

Reuters report on Merck's Keytruda

In her report, author Deena Beasley states that Keytruda shrank tumors "in nearly half" of patients with squamous and non-squamous non-small cell lung cancers (NSCLC), IF they had high levels of PD-L1.  Merck is seeking FDA approval of the drug for patients who have progressed despite previous treatment.  In the study noted, 495 NSCLC patients were tested.  Response rates (defined as tumor shrinkage of at least 30%) were influenced by the presence of PD-L1 expression on the tumor.  45% of patients with high PD-L1 levels responded vs only 16.5% of patients with lower (1-49%) expression of PD-L1, while patients with minimal PD-L1 expression (less than 1%) had a response rate of only 10.7%.  Overall, 19% of patients in this trial responded.  Side effects included thyroid problems as well as pneumonitis (seen in 3.6% of patients, from which one died).  Ms. Beasley also notes that as lung cancer kills approximately 160,000 Americans annually this population is the "biggest opportunity" for anti-PD1 drugs with sales expected to reach in the billions.

Reuters report on Bristol-Myers Squibb's Opdivo

In this article, author Ransdell Pierson reports that BMS halted the study "Checkmate-057" after an independent monitoring committee concluded Opdivo was better than standard chemo used in patients with previously treated nonsquamous NSCLS.  Opdivo is already FDA approved for squamous NSCLC.  Wall Street is expecting Opdivo to be the market leader of the anti-PD1 drugs with peak annual sales of $7 BILLION by 2020.

My thoughts:
1.  I hope they haven't once again made something that is truly more effective than the standard treatment available only after the failure of less effective treatments! I don't know the data for NSCLC well enough to say that this is actually the case.  But, I hope not.
2.  Poor little rich pharmaceutical companies.  Putting all that money into the care of us clinical trial ratties with never a hope of beginning to recoup their losses.  Oh my, oh my, oh my!  
3.  My condolences to the family who lost their loved one to pneumonitis.
4.  My best wishes to NSCLC patients who may have a chance now. 

To you all - I wish you well. - c

Saturday, April 18, 2015

What to expect in Ipi vs Nivo Trial as adjuvant for resected melanoma???

The ipi vs nivo trial for resected Stage III and Stage IV melanoma is now recruiting!!!  Check out some info about adjuvant melanoma treatments and the trial reported here:  

New ipi vs nivo trial for resected melanoma

So what can patients expect?  These ratties will most certainly teach us a great deal.  However, the results of my NED arm from the nivo trial I have participated in can give some idea about how the Nivo/Opdivo arm in this trial might go for prospective patients.  Remember we were testing results of Nivolumab in NED vs NON-resected melanoma as well as doses that ranged from 1-3-10mg/kg and for some of us, combined with peptide vaccines as well.  (The vaccines provided no benefits, so no worries about missing out on that!!!) That report and review are here:

Results from 33 ratties in my Nivo/Opdivo trial - published!

Thoughts on my nivo/opdivo trial results, 4 years later

With this sum up from the published results:
"Our data suggest that nivo is clinically active in resected stage IIIC/IV melanoma, based on low rate of relapse (10 of 33), impressive relapse-free survival - estimated RFS of 47.1 months, and median overall survival not yet reached with over 32 months of follow up."  AND:  "Nivo and vaccine were well tolerated with only 4 of 33 patients discontinuing due to drug toxicities, and only 2 dose limiting toxicities (colitis) observed.  Grade 3 events occurred in 4 of 33 patients (12%) and were manageable."  Dosage (1, 3, 0r 10mg/kg) did not seem to have significant effect on relapse rate or adverse events.  AND:  "Enthusiasm for the use of PD-L1 as a predictive biomarker has diminished as other studies have shown that patients with PD-L1 negative melanomas can still respond to anti-PD-1, albeit at lower rates.  In our study, there were slightly fewer relapses in patients with PD-L1 positive tumors, but this was not statistically significant."  BUT, lower MDSC levels at the start did demonstrate a positive effect:  "There were (in all cohorts together) a trend towards lower baseline CD25+Treg/CD4+ T-cell and MDSC levels in non relapsing patients compared to relapsing patients."

But, what about the folks who are in the adjuvant ipi arm?  Here is an article reporting on a study that examined just that.

Adjuvant ipilimumab vs placebo after complete resection of high-risk stage III melanoma:  a randomized, double-blind, phase 3 trial.  Eggermont, Chiarion-Sileni, Grob, Drummer, Wolchok, Schmidt, Hamid, Robert, Lebbe, Weber, et al.  Lancet Oncol. 2015 March 31. [epub ahead of print]

"We aimed to assess ipilimumab as adjuvant therapy for patients with completely resected stage III melanoma at high risk of recurrence.  We did a double blind, phase 3 trial in patients with stage III cutaneous melanoma (excluding lymph node metastasis greater or equal to 1mm or intransit metastasis) with adequate resection of lymph nodes (ie, the primary cutaneous melanoma must have been completely excised with adequate surgical margins) who had not had previous systemic therapy for melanoma from 91 hospitals located in 19 countries.  Patients were randomly assigned (1:1) receive IV 10mg/kg ipi or placebo every 3 weeks for 4 doses, then every 3 months for up to 3 years. ...Enrollment is complete but the study is ongoing for follow-up for analysis of secondary endpoints."

Between July 10, 2008 and Aug 1, 2011 951 patients were enrolled.  475 = ipi.  476 = placebo.  At a median f/u of 2.74 years there were 528 recurrence-free survival events: 234 = ipi vs 294 = placebo.  Median recurrence-free survival was 26.1 months for ipi vs 17.1 months for placebo.  3 year recurrence-free survival was 46.5% for ipi vs 34.8% for placebo.  

Most common grade 3-4 immune related adverse events in the ipi group:  GI (75 vs 4 in placebo), hepatic (50 vs 1), endocrine (40 vs none).  Adverse events led to treatment discontinuation in 245 patients in ipi group and 182 of these were in the initial treatment period of 4 doses.  5 patients died due to drug related adverse effects in the ipi group.  3 due to colitis (2 of which had GI perforation), 1 with myocarditis, and 1 with multi-system failure with Guillain-Barre syndrome.

"Adjuvant ipi significantly improved recurrence-free survival for patients with completely resected high-risk stage III melanoma.  The adverse event profile was consistent with that observed in advanced melanoma, but at higher incidences...for endocrinopathies.  The risk-benefit ratio of adjuvant ipi at this dose and schedule requires additional assessment based on distant metastasis-free survival and overall survival endpoints to define its definitive value."

My thoughts: 
1.  Folks in my trial were much higher risk generally as we were all Stage IV patients (status post brain and lung mets, etc.) at the start, though Stage III peeps were added later.  
2.  I don't know the drug dosages to be used in the coming trial for either ipi nor nivo.  Nivo doses haven't seemed to have that much effect on adverse events, but ipi has proven that the higher the dose the more frequent those events. 
3.  The numbers of patients in the NED arm of my study were obviously very small.  The greater numbers expected for the coming study will certainly provide a great deal more information.
4.  Unlike many phase 3 trials (the ipi one noted above for example), both arms of the currently enrolling trial are likely to derive some benefit!!
I wish you all my best!   - c

Thursday, April 16, 2015

Melanoma Pathways....A Melanoma Molecular Disease Model

I came upon this article and diagram (Well...truth be told, Bentie did!!!) when we were doing some research for a friend.  While cellular pathways remain very complicated (and  our current understanding of them is probably only the tip of the melanoma pathway iceberg) I thought this diagram was helpful in demonstrating at which point various drugs and treatment combinations are aimed when we hear them described by our docs and in research.
This diagram and the explanation below is from:
A Melanoma Molecular Disease Model.  Vidwans SJ, Flaherty KT, Fisher DE, Tenenbaum JM, Travers MD, et al. (2011)PLoS ONE 6(3): e18257. doi:10.1371/journal.pone.0018257

"The two major signaling pathways implicated in melanoma are the MAPK pathway (red) and the AKT/PI3K (green) pathway which regulate cell growth, proliferation and cell death.

There is a lot of cross-talk between these pathways and their downstream effectors, which we have classified into 8 pathways for simplicity to account for differences in treatment modalities (e.g. signaling through NRAS could affect both MAPK and AKT/PI3K pathways). The additional 6 pathways are: c-KIT (pink), CDK (blue), GNAQ/GNA11 (brown), MITF (orange), NRAS (yellow), and P53/BCL (purple). The complex relationship among BRAF, ARF/INK4A (via dashed line), p16, and p14ARF connotes an alternative splicing relationship."

Now that's about as clear as a colorful mud-pie, isn't it??? - c

Sunday, April 12, 2015

Happy New Year!!! (aka....SPRING!)

It seems to me that this time of everything is bright, blossoming and a much more appropriate time to make resolutions and celebrate that which is to come....than is January! that spirit....

The baseboards and curtains are clean.  My closet has been cleared of it's debris and organized with the coming year in mind.  Roses are pruned.  Wildflowers.....YES!!!  I now have trout lilies, pussy toes (I think those are the ones I dubbed Dr. Seuss flowers!), Virginia bluebells, foam flowers, bloodroot, Jacob's ladder!!!..have been planted.  (Please don't die!  Please don't die!!!)  My desk and sundry records have been reorganized.  Printers have been consolidated.  Summer sewing has been planned and some of it cut out.  Taxes have been dealt with.  Refreshing visits with old friends (SISTERS!!) and new (Star Base Sistah's!!!!!!), provided inspiration, rest, and joy.  {Thanks to you, all.  Sorry about the door stop prick!!!!} I have been spoiled by delicious dinners and hikes and trips and sweetness from the Brentster.  I have been comforted and uplifted by the words of others after they read words of mine.  And......the year is young!!

I look forward to more reading and writing and research and playing and loving and running and hiking and kiddos and cooking....and.....
I will wear my gloves and try to take better care of my nails!  So there!!!!

To all of you...Happy Spring.  Happy joy!  Happy Life!!  - c

Thursday, April 9, 2015

Everything kills melanoma...Take 4:

Those of you who have hung around this blog for a while may be familiar with this post variation.  I occasionally note "discoveries" of things that kill melanoma and a wide variety of other cancers.  They range from coffee to strawberry juice to snake venom to mushrooms. I have left off many...starfish snot comes to mind.  Here are a few of the prior installments:

Everything Cures why do we have it?

One mo one!

Snake Venom and Sophora Root

And now there's this:

Chemistry and Anticarcinogenic Mechanisms of Glycoalkaloids Produced by Eggplants, Potatoes, and Tomatoes.  J Agric Food Chem.  March 2015.  Friedman.

"Inhibition of cancer can occur via apoptosis, a genetically directed process of cell self-destruction that involves numerous biomarkers and signaling pathways.  Glycoalkaloids are nitrogen-containing secondary plant metabolites found in numerous Solanaceous plants including eggplants, potatoes, and tomatoes.  Exposure of cancer cells to glycoalkaloids produced by [these foods] or their hydrolysis products inhibits the growth of the cells in culture [read petri dish] as well as tumor growth in vivo [read lab rat of some sort]. "

Friedman notes that compounds in these three foods cause apoptosis (cell death) in bone, breast, cervical, colon, gastric, glioblastoma, leukemia, liver, lung, lymphoma, melanoma, pancreas, prostate, and squamous cell carcinoma cell lines. Then Friedman goes on to say..."The described results may make it possible to better relate the structures of the active compounds to their health-promoting function, individually, in combination, and in food, and allow the consumer to select glycoalkaloid-containing food with the optimal content of nontoxic beneficial compounds."

Well, damn!!!  If I had only eaten more taters, maters, and aubergines I wouldn't be in my current pickle!!!!  Seriously, those are diet staples in my world.  Ask B and Janara about the quantities of egg plant I eat and prepare for friends and family!!!!

On the other hand....if a miracle treatment can be derived to treat any cancerous malady from the most unassuming plant or other source....that would be fabulous.  After all, Vincristine, a powerful chemotherapeutic agent listed as one of the world's most essential medicines by the WHO, comes from the lowly periwinkle.

It pays to smell the flowers! - c

Sunday, April 5, 2015

April in Cades Cove... ruled by the God of Small Things.

Bishop's Cap  Can you see them?

Bloodroot  So called because the Cherokee used the red juice in the rhizome to dye baskets, cloth, and body paint.  Ingestion of the juice is ill advised as it can be lethal!!!

These odd little flowers (?) grew on stalks from a mat of purplish green leaves.  They weren't in my wild flower book, so I dubbed them:  Dr. Seuss Flowers!!

Dutchman's Britches  Do you see the pantaloons?!!! I had longed to see these 'in person' ever since I saw a picture of them in a wildflower book my granny gave me sooooo many years ago.  The excitement poor Bentie had to endure was pretty intense!!!

These were seen on a couple of our hikes and are clearly Fairy Cabanas, being put up by the residents of a most beautiful Fairy Glade in the White Oak Sink.  (They are to me, anyway!)

Fern Fronds

Sharp-Lobed Hepatica  A dull, liver related name, I fear, for a very beautiful little flower.

Rue Anemone above and Spring Beauty below.  I can't begin to show how beautifully the ground was covered in all these beautiful little flowers.

Squirrel Corn whose leaves when I first spied them without the blooms had me thinking I was looking at a Bleeding Heart....but NO!!!  They are in the same family, along with Dutchman's Britches.

Shining Club Moss  Not a very good pic, but it was quite shiny!

Spring Beauty.  Loved the name, the look and the fact that the blossoms only open when the sun shines just so.

Squirrel Corn  Because squirrels supposedly eat the tubers.  They didn't eat these!

Cut-Leaved Toothwort  One of the cresses, per Mountain Folks, whose leaves apparently taste like arugula and whose rhizome is peppery like a radish.  Is so named because the tooth-like appearance of the root made docs think it could cure toothaches!

Sweet White Trillium  B insists that he risked life and limb in order for me to take this pic.  Such a Drama King!!!

Northern White Violet  Maybe????

Woolly Blue Violet

Beaked Violet

Halberd-Leaved Violet

Trout-Lily  Before we started I told Brent that I really wanted to see this flower, but doubted I ever would!!!  But, what do you know?  Yes, they all hang their heads.  Their name comes from their leaves...that are speckled like a trout.  Beautiful and amazing, no?????
Ascribed variously to Mark Twain, Sir William James, George Roemisch....."Forgiveness is the fragrance that the violet sheds on the heel that has crushed it."  Not sure Bloodroot is so forgiving!

Just a small bit of the beauty that is the Middle Prong.

A beautiful 4 days with 29 miles of hikes.  Wonderful company.  A beautiful place.  A lucky life.  I dedicate these pics to B, Dan and Don, and Granny.  Who have all indulged me in so many ways...but especially in my love for small things.  Blessings to you all.  -  c

Thursday, April 2, 2015

Health Monitor Magazine focuses on melanoma!!!

The folks from Health Monitor magazine contacted me a while back asking if I was willing to be interviewed for their publication (along with some other amazing folks dealing with melanoma, too) in-office magazine that patients can pick up at their doctor's offices.  Each magazine focuses on one disease process or another and in the past they have addressed diabetes, living with cancer, arthritis, eye care, etc.  For this issue, they wanted to focus on melanoma!!!  With some trepidation I agreed and an editor sent me a panel of questions that I could respond to as a start.  Most were the usual stuff.  What happened? How did you find out you had the disease?  What treatments have you had?  But, the questions that made me really think were these:  Was your diagnosis of melanoma a silver lining for which you are thankful?  and...  Are you a different person now than you were before your diagnosis? 

Well....  Hmmm.... To the first question, the answer is very easy.  HELL NO!!! I am NOT one of those people who will tell you they are soooo thankful that they had cancer.  But....that seemed to need an explanation.  As to whether I was changed because of my diagnosis, I really, really wanted to say, "NO!!  Absolutely not!"  Yet, was that the truth? I thought about it for several weeks.  I spoke with friends and family.  Tammy B said it best, "No.  You're not the same person you were before.  Anybody who agrees to have their head zapped and go through the things you have been through is certainly changed.  And that's not a bad thing."  I wrote the essay below in answer to the questions I was sent.  I wasn't sure it would be anything that anybody, much less the editor, would be interested in.  But, I decided to be REAL!!  To my amazement, they liked it.  So much so that I was asked to be on the cover.  What appears in print is a much more condensed version,  as I fully expected it would be.  A nurse at work put the collage above together and sent it to me.  My peeps saw the publication before I did, since my office had subscribed and got their copies on a day I was off!  It actually surprised me that my blog title, chosen so many years ago, echo's so perfectly what I feel now, looking back...and forward.  Here is the essay....

Chaotically Precise:  Life, Love, and almost 12 years with Melanoma
Melanoma is a sneaky beast.  Symptoms caused by its intrusion are often nonexistent until the victim is dealing with significant brain or other internal metastasis.  Even external skin lesions can seem small and innocuous.  They are not always black and fierce looking!   Sometimes there is no “primary” lesion at all.

My melanoma journey began in 2003, when my husband agreed that a small nevus on my back had changed.  I visited a local dermatologist.  The lesion needed to go.  He called me himself, sooner than he’d said he would, to tell me the pathology report confirmed melanoma. We were not surprised.  I am grateful to this day that he made the call, rather than waste my time with another appointment or leave that uncomfortable chore to his office nurse.  

To say that I was not surprised does not mean that I was not hysterical…on the inside.  I was only 39! My kids were just 10 and 12 in the throes of middle school!  After 19 years as a pediatric nurse, I was fulfilling my dream of gaining my masters and pediatric nurse practitioner certification at the University of Alabama at Birmingham despite the 6 hour round trip twice weekly.  With family, work and study…I did not have time for this!!

I didn’t have time to be hysterical either. I needed to find a surgeon for resection with appropriate margins and node biopsy.  Despite a good rep and supposed expertise in oncology surgery, I managed to pick a complete jerk.  To my concern over the diagnosis of melanoma he replied, “Oh, you’re much more likely to die in a car wreck.” To my desire for a sentinel node biopsy, “You don’t need that for this lesion.”  I pushed and made it happen.  And, yes.  I did need it, since one of the three sentinel nodes that lit up in my right axilla proved positive for melanoma.  

In melanoma world, things can get murky fast.  To do or not to do sentinel node biopsy followed by the removal of nodes in the area if the sentinel node is positive remains controversial, especially for thin lesions like mine.   My lesion measured only 0.61 mm Breslow thickness, Clark level IV, but was not ulcerated.  Older data notes that for lesions measuring 1mm or smaller, the chance of finding a positive node is 5% or less.  More recent studies found 18% of such patients had positive sentinel nodes and determined that biopsy was even more important for thin lesions with the additional risk factors of ulceration, nodular growth, mitosis, regression, or patient age less than 40. 

Having had all of the insensitive surgeon I could take, when the path report for the sentinel node was positive, I sought a truly kind and brilliant local surgeon to provide the complete lymphadenectomy indicated due to the positive node.  Controversy reigns regarding complete lymphadenectomy as well, since we know patients can still develop melanoma at other sites after the procedure and there is the risk of swelling in the adjacent limb secondary to lymphedema.  However, new data demonstrates improved survival rates for patients who choose the procedure. 

I had sixteen additional nodes removed, none of which were positive.  I worked hard to recover full function and range of motion to my right arm with exercises recommended to breast cancer patients.  I have been lucky to have never developed lymphedema.  

Next stop, oncologist.  He was an incredibly sweet man who very sadly informed me that HE felt devastated whenever he had to take care of patients with renal cell carcinoma or melanoma.  (Years later, Dr. Weber also said: “Melanoma is the kind of tumor that gives cancer a bad name!”)  My local onc begged me to do a year of interferon.  When I noted the sad facts related to interferon’s lack of tangible success in prolonging life or preventing further disease, he replied with tears in his eyes, “But you’re so young, I just can’t stand it for you to do nothing.”  His dismay and horror at my condition were most disconcerting and uncomfortable, but in 2003, there really was nothing else to offer.  I decided to “watch and wait” as the rest of my body including my brain was clear on scans.

What was I to do with the rest of my life???  I knew I might be lucky and be done with melanoma or those nasty cells that had already proved they had traveled to my lymph node might still be floating around, lurking and ugly.  My husband and I had hard and truthful talks with the kids, family and friends.  I met with my professors.  They allowed me to take an incomplete and finish remaining course work, along with already scheduled courses, the following semester.  I am forever grateful for their help.  I graduated in 2005.

Despite dermatology exams every 3 months, between visits in 2007, a strange, dark, tiny, raised spot developed, seemingly overnight, on the inner aspect of my left arm.  I knew it was melanoma.  Nothing else grew that fast and looked that ugly.  My dedicated derm removed it and called again with the bad news, path positive for melanoma.  

What the heck?!!!!  Was I never going to get a break?  It had been almost 5 years since my last lesion!  I had never been a serious sun worshiper.  Yes, there had been a couple of sunburns as a child and a couple more as a young adult.  How could this be???  Research tells us that the use of tanning beds before the age of 35 increases the risk of developing melanoma by 75%.  However, we also know that sun exposure is not melanoma’s only cause.  And in truth, I had been lucky.  Not everyone gets almost 5 melanoma free years after their first lesion, especially with a positive node.

Sentinel node testing was done.  When the resection was completed by my surgeon he removed the sentinel node along with 12 additional ones from my left axilla.  They were all negative.  Oncology still had no real treatment options.  We discussed IL2.  However, after the lesion was removed I was again NED.  Having ‘no evidence of disease’ elsewhere in my body according to scans, IL2 seemed a little extreme.  I opted to continue to watch and wait with the addition of “cherry picking” lesions as they cropped up.

In 2009 a routine chest X-ray, part of the occasional radiological survey along with some PET scans done during those years showed “something” in the right upper lobe of my lung.  Not in the lung tissue itself, but in the right bronchus.  Given my history as an asthmatic, it was determined to be some sort of mucus plug.  I was told, “Melanoma NEVER looks like that.”  My husband did share one article that demonstrated that sometimes, it kind'a did!  But, I bowed to authority and watched and waited.  

In April of 2010, having been referred to a pulmonologist  who had also been watching and waiting on the lesion that never got worse, but never got better, finally did a bronchoscopy.  Sure enough, the gunk pulled out proved to be melanoma.  So…melanoma CAN look like that!  I do not hold any resentment toward either of the doctors.  I could have demanded a bronch much sooner.  It just proves that melanoma rears its ugly head in some very unpredictable ways and if you don’t study it every day, you won’t necessarily be prepared for it.  My mantra for melanoma patients everywhere:  Learn from me - GET YOURSELF A MELANOMA SPECIALIST!!!!

I was now Stage IV.  Before I could move on with fixing my lung, scans of my body were in order.  An MRI of the brain showed a 3 mm lesion in the right frontal cortex.  With that ringy-dingy, I was now shopping for a neuro surgeon and neuro radiologist, not to mention a thoracic surgeon for what I hoped would be only partial lung removal.  Trust me!  Bathing suit shopping is much more fun!

Docs found, blog started - as an easy way to update family and friends.  Since then this blog has evolved into a catharsis for me and my effort to provide a source of information and hope for others.  On April 27th I had stereotactic radiation to the brain, followed by right upper lobectomy of my lung on April 30th.  

As I recuperated from my surgeries, returned to work as a PNP in my pediatric office, and pondered what step to take next, in October 2010, my throat kept feeling really tight and weird.  I take a look.  A very strange black lump is visible peeking back and forth from behind the right tonsillar pillar.  Great!  Do I have to find all my melanoma myself?  An ear, nose and throat surgeon removed the affected tonsil and surrounding tissue.  Again.  Positive for melanoma.  It had not been noted on my recent PET scan.

 I knew I was in a serious downward spiral; too many recurrences, too quickly, in bad places.  I had to do something, but what?!!  At this point in melanoma world, Stage IV melanoma patients had a median survival of 8-9 months and only 15% lived more than 3 years after diagnosis.  The few treatment options available worked for only about 10% of patients.  Testing started on the BRAF inhibitors (a mutation for which I am positive) in 2008, but they were still in trials at this point - AND, because of my surgeries I had no measurable disease…something the trials required.  Vermurafenib and Dabrafenib were FDA approved in 2011 and 2013.  Despite most patients developing resistance to the drugs in 6-9 months (though combining them with MEK inhibitors has improved those numbers and decreased side effects) they have been a boon to many.  The immunotherapy, anti-CTLA-4, now known as Ipilimumab or Yervoy, was tested in mice in 1996.  It was in trials with human ratties in 2010, but unavailable to me.  Ipi achieved FDA approval in 2011.  In 2013, analysis of 12 studies examining more than 1,800 patients treated with Yervoy found that 22% of these Stage IV melanoma patients had survived 3 years or more with some approaching the ten year mark.

In December 2010, despite an odd 4 mm lesion of questionable origin now showing itself in the right parietal area of my brain, I was accepted into the Phase 1 anti-PD1 (Nivolumab, now called Opdivo) and peptide vaccine trial in Tampa, at Moffitt Cancer Center, with Dr. Jeffrey Weber, in which I remain today.  The lesion miraculously disappeared on subsequent MRI’s.  I was given 6 vaccine injections and Nivo at 1mg/kg every 2 weeks for 6 months and nivo alone every 3 months for two additional years.  My last dose of nivo was 21 months ago.  During the active portion of the trial I was followed with CT scans to neck, chest, abdomen and pelvis with an MRI of the brain every 3 months.  Progression would have meant expulsion.   I have now ‘graduated’ to every 6 month scans.  My last set were in February and I remain NED.

I will never be one of those people who say they are thankful for their cancer diagnosis.  No!  Melanoma has stolen much and exacted an incredible toll from those who loved me.  The time and financial costs expended have been more than I can calculate.  Friends and family have worried, been distressed, experienced pain.  My kids have born the burden in ways that came to light immediately and in the more detrimental process as a weight over time.  Yet…we are all here, together; having made the conscious decision to stick it out, to be there for one another.

People ask me how I do it.  How I go on, a bubbly, energetic person, in the face of all I have experienced and the fears I must continue to harbor?  In some ways, what choice do I have?  Though I would like to be able to say, “Melanoma didn’t change me!  I’m the same person I’ve always been!”  The truth is that melanoma and its tribulations have taught me much.  Yet, WE ALL CHOOSE, everyday, the person we want to be.  I have never spent time on, “Why me?”  I figure, “Why not me?  Nobody else deserves this crap either!!!”  But, I have raged at the persistent, inescapable nature of this beast.  As of yet, no one with melanoma can feel truly free, no matter how many surgeries or treatments endured.  There remains a chance, that melanoma is still there, just hiding, until it decides to attack again.  That is infuriating!!!  Knowing my loved ones, who have educated themselves about this beast such that they can hang with Melanoma Big Dogs, experience that fear, that worry – is crushing, if I dwell on it.  I am no Pollyanna.  But, I have worked to turn that rage into something of worth.  I try to help those seeking answers through my blog and on the melanoma forum of the Melanoma Research Foundation at  I am not alone in that.  The site is a source of comfort, information and support due in large part to the generous melanoma patients who share their experiences and concern.  I figure if I was forced to learn about and from melanoma, I might as well share that knowledge with others.

So, how do I stay positive? Through my work with other melanoma patients, the children and families I’ve spent my life caring for and my own experiences, I have narrowed it down to this.  Love! Live!! Laugh!!!

Love!  Without the support of friends and family, I would not be here today.  That is not drama.  It is true.  They gave me strength, courage, distraction, and a REASON to continue when things seemed insurmountable.  Love will not always come from the sources you expect.  Sadly, some you think will be there for you will not.  However, love will spring fresh and true from places where you least expect it.  Beautiful and enduring.  

Live!  When first diagnosed and at various times since, I have been encouraged to lie down, rest, quit my job, take a break, etc.  There were those who thought I should not continue to pursue my master’s work…at least not right then.   Don’t do those runs and INSANITY work-outs.  Save your strength.  And while there are plenty of times when rest and breaks were important, if not essential, I NEEDED the normalcy of MY LIFE!  While working 12 hour shifts, running, exercising, completing two semesters of course work in one is decidedly NOT my recommendation for everyone, for me, taking care of children, being busy with my hobbies and friends was MY LIFE.  If I did not continue those things, I had lost my life, before melanoma took it from me.  So…LIVE!  YOUR life.  In whatever way feels right and real…for you…as best you can…as long as you can.

Laugh!  If you cannot learn to laugh at the crazy things that happen in melanoma world, you are in for buckets of tears.  Rude people, demeaning situations, physical pain, horrible fear – will happen.  BUT, there will also be something funny, right alongside.  I promise!!!  Scans, surgeries, participating in a rattie experiment (Oops, I’m sorry…a clinical trial!), come with some pretty cringe worthy, ludicrous moments.  Yet, traveling with my sister for my trial resulted in some of the most fun we have ever had! Planning metal-free comfy travel and scan attire is comic at best.  I offer great thanks to:  saggy booby lady, pilling sweater woman, mean woman in a snit on the plane, baldy at the car rental place and so many more characters, who might have ruined my day, had I let them.  Instead, they became adventures and opportunities to laugh like a hyena.  (NOT while they were looking!!!) Dear ones who sent pics of themselves on the potty while I was getting an infusion, saved up stories to distract me with when getting my injections, nurses who kept it real AND fun, sweet plans my husband has made to surprise and spoil – I thank you all.  

So, it is all a tangle isn’t it?  I would not be writing this had I not had melanoma and a blog.  I would not be here, living and laughing if not for my friends and random strangers.  It is a weird and wonderful world.  I am thankful for every moment in it.  I am grateful for all of you who spend those moments with me.  I wish you well.
Celeste Morris