Tuesday, August 9, 2016

And then there's me....

I can't believe I've been writing this blog for over 6 years.  I can't believe that I've been dealing with melanoma for 13.  For those of you who do not know, (and for those of you who do...please skip ahead...this story doesn't change!!!) I was diagnosed with melanoma via a cutaneous primary on my right upper back (Clark level 4, 0.61mm) with a positive sentinel node to the right axilla in 2003, rendering me Stage IIIb.  I opted to have a complete lymphadenectomy of the axilla, and despite weird nerve things to the area, have never had to deal with lymphedema.  I had no other treatment, since I didn't (then or now) view interferon as one.  In 2007, (almost 5 years later) I had what was deemed a "second primary" to my left forearm (Clark level 3, 0.5mm) with no positive nodes, but still opted for what was basically a complete lymphadenectomy to my left axilla.  Still, as before, no other treatments were available.  In 2009, on a routine chest X-ray (scans were not really done back then), "something" was noted in the right upper lobe of my lung.  I was told by multiple experts, it "absolutely did NOT look like cancer".  After watching and waiting, with scans that showed no worsening nor improvement, a bronchoscopy and subsequent path report revealed: "Yep, melanoma can look exactly like that!"  Brain scans showed a 3mm met to the right frontal cortex.  On April 27, 2010 I had SRS to the brain met and on the 30th, a right upper lobectomy of my lung.  Not long after returning to work that August, (Yes, I was very lucky to be given time off to recoup and spend with my family!!!) I thought my throat felt really weird.  Understand, NONE of my mets had caused me one moment of pain, dizziness, shortness of breath - nothing.  The surgery and radiation to get rid of them - completely miserable.  But the melanoma itself - not a problem.  However, with the strange feeling in my throat....I take a look.  Yep, ugly looking black thing on my right posterior pharynx peeking out from behind the tonsilar pillar.  Off to the ENT I go and have my right tonsil with wide margins removed Saturday, October 30, 2010.  Path result is not surprisingly melanoma, with a 1.9cm X 0.7cm X 0.8cm tumor growing on a stalk attached to the right tonsil.  Dealing with Trick or Treaters was weird being unable to speak, B at work, and the kids off at college!!! But, I was back to work on Monday.

So....what was I doing while all this was going on???  Initially, just trying to make sure the kids still did their homework and got to go to dance and soccer practice as usual.  I worked hard to provide birthdays and play that were still the fun times all kids deserve, while occasionally wondering what the hell I was going to do if that shit got into something I couldn't cut off and whether I was insane to continue to pursue my NP and master's degree.  Once dealing with brain and lung mets....I was mostly just trying to survive the insults the treatments had been to my body, regain my strength, and keep the kids on an even keel as Rose was just graduating high school, then joining Fred in college.  In fact, I didn't even tell them about the tonsil met and surgery until it was over, an omission I got a great deal of grief for, while constantly wishing ipi would magically gain FDA approval.  Meanwhile, B was searching madly for a treatment or trial.  He was drawn to vaccines, though we turned one such option down at Vandy - and a good thing, too, as it was ended early when the patients getting vaccines did less well than those without!  The search was further complicated by the fact that between all my events, I was NED.  Available trials at the time (and it is barely any better now) required measureable disease.  There were strange discussions of allowing my next tumor to remain and grow, so that perhaps I could gain entry.  In December of 2010, a repeat brain scan showed a 4mm brain met to my right parietal.

Just prior to that scan, B had procured a visit with Dr. Weber in Tampa/Moffitt, to discuss my case and participation in an NED arm of a Phase 1 trial testing nivolumab combined with a peptide vaccine.  We made the trip Dec. 12, 2010.  The vaccines were what drew B's attention to the trial.  Little data was available about anti-PD1 - nivolumab/Opdivo - then known as MDX1106 and later as BMS936558.  In fact, here's a little story from 2013, that tells the history of the drug and my place in the trial:  Love Potion #9 

At our visit, there was much discussion of my past and future.  A review of my latest scans - Was that really a brain met?   If so, it would preclude my participation in the NED arm of the trial, yet not be sufficient tumor burden to allow my enrollment in the active disease arm. Here's how things went as I wrote at the time:

'Weber pops back in to tell us that he doesn't really know that it is a met at all. He is going to get the other folks to give their opinion.  On his return, he says that the other radiologist/neuro people couldn't definitively say that the lesion in question was a met. He tells us that to his mind, I have "minimal residual disease" and therefore qualify for his study should I wish to participate in it. I figure the conversation went something like this: 
Weber = Do you think this lesion is a met? 
Neuro/radiologist = Well, given her history, probably. 
Weber = Yes, but, on its own. Can you tell me that this is definitely a met? 
Neuro/radiologist = Well, not definitely.'

Weber dubbed my situation as one of being in "Melanoma Neverland"! Here's the post that tells the entire story of that visit: Melanoma Neverland  I agreed to participate in the trial.  [From that post] As Brent put it, "We are in Melanoma Neverland, but this may be a door out."   We rushed frantically to sign papers, complete an EKG, various labs and other madness...before catching our return flight to Atlanta.  I started the actual trial, as patient #9 (or possibly #3, if you discount those who dropped out) in the first cohort of the NED arm.  My dosage of nivo was only 1mg/kg.  The other cohorts were given 3mg/kg or 10mg/kg respectively, with an opposing arm of three cohorts with active melanoma being treated as well.  We were all given 6 peptide vaccine injections with our respective anti-PD1 infusions every 2 weeks for the first 6 months.  We were then given only an infusion of our dose of anti-PD1 every 3 months for the next 2 years.  The peptide vaccines were proven to provide no benefit whatsoever.  Here's a post from 2013:  Peptide vaccines do NOT trigger immune response to melanoma!  On the other hand, we ratties benefited a great deal from the nivo.  My brain ditzel was gone from my MRI by March, 2011.  Here are a couple of posts in which our trial results were reported:

From 2014 when results were first published:  Ces't moi! Results from the 33 ratties in my nivo study - published!
Also from 2014, my thoughts when looking back on my trial:  My Nivo/opdivo trial - First dose 4 years ago!

So, here I am today:
156 months (13 YEARS!!!!) post my original melanoma diagnosis in 2003 at age 39
76 months Stage IV (more than 6 years!!!)
70 months NED
68 months after starting nivo (Opdivo)
38 months (more than 3 years) since my last nivo infusion in June of 2013

I am now being seen and scanned annually.  Or at least that's what I am supposed to do!!!  Scans (a CT of neck, chest, abd and pelvis with an MRI of my brain) were scheduled for the 25th of this month.  BUT....what am I notified of by my dear, caring friends (who take my money!!!!) at Blue Cross Blue Shield?

You may experience the pleasure of your CT scans as planned, however in regard to the MRI...."Based on eviCore Oncology Imaging Guidelines, we are unable to approve the study your doctor requested.  Your records show that you have SKIN DISEASE that is stage 2B to stage 4.  Follow up magnetic resonance imaging, detailed picture study, of your brain is supported for this problem once per year for the first 5 years after your skin disease was found.  Your records do not show that this applies to you. This decision just means your health plan won't pay for the service.  You can still receive the service, but you will need to pay for it yourself.  {signed} Michele Awobuluyi, MD"

Skin disease?  Melanoma is not poison ivy or eczema!!!!  Seriously?!!  And just for the record....I have paid into Blue Cross MORE than they have EVER paid out for me!!!  Even with the treatments and surgeries I have had.  Yes...I did the math!!!  What a F@CKI#G A$$ and disappointment you are DOCTOR (????????????????) Awobuluyi!!!!  I operate under the principle that healthcare providers are supposed to PROVIDE healthcare!  Under what principles do you operate? Oh, that's right!  NONE.  Not the Hippocratic Oath nor basic common sense nor human empathy.

Oh, well.  I am in the process of appealing the "decision".  Just what I deserve to be spending my time doing while Michele Awobuluyi gets paid to check BCBS boxes in a cubicle somewhere.  I hope it is a really ugly navy cubicle, with lint and food stains on the rough Miller-Martin divider.  I hope it smells of rank oil and feet, and some poor soul is constantly hawking up loose, productive loogies just beyond the panel...but I doubt it.  I am more than aware that I am not alone. I work with our referral coordinator to make these appeals for my own patients all the time.  Many folks are much worse off than myself, having no insurance.  Having no comprehension of what all the letters and word salad you are sent as a patient even means.  Having no idea that they CAN appeal.  Having no ability nor the strength to do so!!!

On top of all that....the ludicrousness of the entire thought process behind the denial of an MRI with a patient having Stage IV melanoma, especially one with prior brain mets, boggles the mind!!!  When I wrote my post "There's a reason they're called melanoma WARRIORS!!!" I wasn't even thinking about this denial or melanoma progression data.  But, look at our sad histories!  We have fought and endured and lasted far longer than anybody ever thought we would.  Yet, so many of us have spent YEARS NED only to recur in the brain and elsewhere.  Not only that, for the most part, we were completely asymptomatic!!!  If you wait until you pass out and have a seizure...it is almost always too late!!!  Melanoma REQUIRES that we strike back - and hard! - sooner, rather than later.  Without scans...and in the brain that means an MRI...we have no way of knowing what is going on in there.  But, of course, the Queen of Melanoma, Rev Carol, already addressed this, years ago!  Here she is from 2014:

The NEED to DEMAND scans in melaland....from Rev. Carol Taylor's blog....attittude of grattitude

Excerpts, from our amazing Queen:  "I feel a very strong, stepped-up sense of urgency to press all my melahomies, no matter where along the staging spectrum they reside, to demand to be scanned.  ...  Prepare to be your own best advocate and prepare to push for what YOU need to stay on top of this disease and for YOUR peace of mind. You may have to push your doctor. You may have to get another doctor (make sure any doctor is a melanoma specialist and understand they will not all agree. Just because ONE doctor tells you something doesn't mean ALL doctors you see will tell you the exact same thing!) You may have to do battle with your insurance company. You may have to do battle with them every single time your doctor orders scans. OK. While this stinks and isn't how it should be, if this is how it is...do battle. And, if your doctor HAS ordered scans and they are denied, enlist your doctor's office to help you with your insurance company. They/the hospital should have someone on staff trained for this. Use them! ...  A word to doctors. I'm learning that some of you...not all of you, and for those who scan, I am truly grateful but you are few in number when it comes to scanning stage 2 melahomies and under...some of you...many of you refuse to scan my lower staged melahomies. You, of all people should have a basic understanding of this disease and how it works and that it has NO MO. None. Zilch. Nada. You know.  People with in situ (stage 0) melanoma can be stage 4 in a matter of months, years, or never. You know that the ONLY way to be sure of what melanoma is, or is not, doing is with a scan.  ...  Give my melahomey and your patient...this person who is trusting YOU with their LIFE this much, this peace of mind, this ray of hope.  ...  It is your job to help and do no harm. That's what you swore to do. Do your job. Do no harm. Help. Scan.  ...  And now, insurance companies. ...  I'm telling my melahomies to fight you tooth and nail if they have to, in order to get the scans their doctors order and that you all too often deny. Really now, all companies and corporate entities are made up of real-life, flesh and blood people. Get in touch with your inner humanity and stand with us instead of against us.  ...  It makes good business sense and will save you money in the long run to pay for our scans upfront. ...   It will be far cheaper to pay for scans NOW and catch much disease early, than to let it go unmonitored...  And...learn from our fellow cancer road travelers who have colon cancer. While melanoma is rising, colon cancer is on the decline! Hallelujah and praise the Lord! Why the 30% decrease in colon cancer rates, you may ask? Because more people than ever before are getting colonoscopies as a preventative measure and precancerous lesions are caught and removed EARLY! Polyps that are cancerous are caught and removed while they're tiny before they become huge problems.  ...  I'm hoping and praying that more and more of my fellow travelers on melanoma road will make themselves heard, will advocate for themselves and for their loved ones, and really start to demand proper treatment at all levels and that starts with demanding scanning.  ...  If more and more make those demands, more and more will see results.  But, we can only do so much. We can demand.  Will you hear?  Will you help?  Or will you harm and possibly kill?  Please. Stand with us.  We're counting on you.

Remember...one day YOU may hear that YOU'VE got melanoma or that your spouse or your child does or your parent or your sibling...then what?  Will you or they have to live with the same rule you've imposed on us? I strongly doubt it.  You'll get it then because you will have gotten it.

Make a difference NOW. Before that happens.  Thank you. I really Do want to rise up and call you 'blessed.'"

I told you! She is the Queen!!!  I will continue to fight.  I hope you do, too.  And if you can't fight for yourself.  Enlist others to help.  You can do this.  But, there are many of us here to help....should you ever have the need.  I'll keep you posted.  Love, c


  1. Yuck! I'm mad. I've bragged about how wonderful BCBS has been in my situation. Please update us about your appeal.

  2. WHAT?! That is unbelievable!!!

    Sorry about your skin disease though...

  3. Dr Michele Awobuluyi should be deeply ashamed. I wish you all the best, Les, in your fight for scans. Yes, please keep us in the loop on your approval status.