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

Sew Chaotically! ~ Bruges by Orageuse - 7 months in the making - and an update

On August 26, 2018 I celebrated 30 years of marriage to my best friend!  On August 27 I had annual scans to follow up on my Stage IV melanoma.  If clear, they were to be my LAST per the Wizard Weber!!!!  You have no idea how weirdly fabulous it feels to consider that option unless you have spent years (16 for me) in the twilight zone that is an ongoing cancer diagnosis!!! But driving home from the scan, everything changed ~ again.  That is the crazy "normal"composed of boulders, treacherous ravines, mountains, and great big piles of shoo shoo that sit right in the middle of the roads we cancer peeps navigate.  On August 28 I posted this pic on my insta account...

On August 29, I wrote this: Live chaotically!!! ~ Refashion #2 ~ and a buried lead from weird, wacky, melanoma world!!!!  which reads, in part:

In the refashioning of me ~ I've been out of work in Greenland for two weeks!!!  There was a to-do list!  You would not believe the stuff that's been accomplished around here!!!  I was so excited that it had only two more items left to complete before an amazing Italian vacay...leaving several weeks of reading, music and sewing!!!!  Well, when you live in weird, wacky, melanoma world, you never know what might happen next.

Monday, I had my now ANNUAL brain MRI and CT's of neck, chest, abdomen and pelvis.  I didn't even have to go ballistic on some A$$hole at BCBS!!!  All studies were approved with no talk of, "These studies are not needed due to your history of 'skin disease'!"  Three sticks and one sluggish lab tech later - while driving home after a late breakfast that included a large hair, unlike mine,  laying across the potatoes that accompanied a bacon, egg and avocado sandwich from First Watch, I got a call from my local oncologist.  "Hello!  Oh my goodness!!  Ummmm.  I mean, your scans were fine and your brain was fine in regard to melanoma, but you have an acute appendix."  I'm like, "No, I don't.  I don't even have a stomach ache (and that's saying something after a lot of contrast medium and the late breakfast I just had!!), much less a fever, vomiting, diarrhea...".  "No, really", she replied.  "I'm calling the surgeon now."

So, yesterday....I saw the surgeon.  The same dear one who set things straight years ago after a botched job with my initial primary in 2003 and dealt with my next melanoma crazy in 2007.  Now, just so you understand the wacky world that is melanoma follow-up, ditzelville as B calls it, after all the scans that I have had for the past 15 years, I now know that I have:
1.  Sparkly nodules in my thyroid.
2.  A shit ton of gall stones.
3.  A hole in the back of my head that no one can explain.  You can choose sequelae from a really bad fall down the stairs vs a brain met that resolved before it was noted.
4.  A uterine fibroid.
5.  Along with a few other bits and bobs that wax and wane over time.
BECAUSE....when you get scans....while looking for things that may do you harm, you inadvertently find doo-dads that may be important or just red herrings, that - if you lived in a normal world - you would never deal with at all, since you were not having any problems that warranted investigation!!!

Lots of folks in melanoma world freak the F@CK out when they get news of such things!  (Hell, lots of folks with nothing wrong with them or their lives stay in FREAK out mode!!!)  I've been here a long time.  And, I'm weird.  I don't freak out.  It's not fun to work through these things.  But, freaking out requires energy that I don't possess.  So, when Dr. Weber freaked out about my gall stones when I developed rectal bleeding and diarrhea - I had them evaluated.  They were fine and so was I.  In that vein - today I saw the surgeon.

He noticed the gall stones.  With no problems, didn't want to touch 'em with a ten foot pole.  The appendix, well....  Probably should come out.  It's bigger than on prior scans.  Probably a mucocele.  Often caused by 'nothing'.  Sometimes related to another icky, though less aggressive cancer.  And with my history, possibly related to melanoma...though...still...unlikely.  So, appendectomy scheduled for Thursday.  What the heck?!?  I'm between jobs and countries.  Let's get her done!  Refashion.  It's a thing.  I'm gonna miss you my dear little mucoid appendix!  Planning on some quality time together tomorrow!!! - c

Well!!!  If you've been hanging around here for a bit, you know things didn't go as planned for the NEW PLAN!  I was incarcerated for a while and it wasn't pretty!!!

9/10 - How to move seamlessly (?) from one deadly disease to another - or - What the F@CK?????????

9/15 - Lordy, lordy, lordy!!!! What a bunch of gaum!!!!

9/23 - Mantra (and angels) for ROUND 2!

The story ~ 9/25 - Tales from the Crypt ~ Part 1 INCARCERATION HOSPITALIZATION ~

9/26 - Tales from the Crypt ~ Part 2 INCARCERATION HOSPITALIZATION RECIDIVISM (The tendency of the convicted criminal to re-offend.) ~  

9/27 - Tales from the Crypt ~ Part 3 PUNISHMENT, cruel and unusual ~

9/28 - Tales from the Crypt ~ Part 4 Putting Humpty Dumpty together again ~

9/30 - Tales from the Crypt??? Nah! That's not right! Tales from REHAB - Part 1!

10/4 - REHAB - Part 2 What the heck do we do now???

10/6 - REHAB - Part 3 Nourishment for the body, and even more for the soul.

A three month regimen of CAPOX, a combination of oxaliplatin IV and capecitibine orally, followed creating its own special crazy.  But, back to my insta pic!!!  7 months, multiple nightmares and two surgeries ago I started these PANTS!!!!!  Pants that were blue and awesome.  Pants that were to be the basic component of my Italian vacation wardrobe.  Pants that I had fallen in love with when perusing all the lovely patterns by Orageuse!!! Fun fact:  When you lose over 15 pounds but your belly swells as though you are 6 months pregnant, it is NOT the time to make ANYTHING with a waist band.  Hell, it is not the time to WEAR anything with a waist band, much less your beloved Burges!!!

It has been a crazy ride to say the least. Still, when I went for my oncology recheck this week after my first set of scans to follow my "new" ex-goblet cell adenocarcinoma of the appendix (GCC) Stage II and "old" diagnosis of melanoma Stage IV, I wore the best suit of armor ever:

Orageuse's Bruges and Butterick's 5616 Jean Jacket Extraordinaire!

Yep!!! Scans were clear.  Lab work looked okay.  We are in process of double checking my folate and B 12 levels, due to the length of gut removed, and following some tumor markers that are likely to be fine given the clear scan.  The plan is to follow them every 3 months with some regimen of routine scans and of course additional ones should the markers become elevated.  I am doing pretty well.  I am getting stronger.  I run or do the elliptical with core work at least 5 days a week.  The soles of my feet still burn and the tips of my fingers remain a bit numb due to the neuropathies the CAPOX caused.  Hopefully, they will gradually resolve.  Hair loss has stopped and the weird plaques and rashes are fading.  My most difficult problems of late have been arthralgias to hips and knees.  I think the CAPOX re-flared the crap I dealt with while I was on nivo (Opdivo), but that's just me.  Those symptoms dissipated over time, so I am hopeful these will as well.  Since finishing CAPOX in January, I have had three episodes of extreme bloating and abdominal pain.  We are trying to determine if they were caused by inflammation/colitis the CAPOX triggered or an anatomic problem related to the bowel surgeries.  The first episode was the worst, with each successive event less so.  I have fingers crossed that they were residual flares caused by the CAPOX and will cease!!!  At any rate, should it happen again, I will go in and have a film done in real time to see if we can better determine what is going on, as the scans I just had showed no stricture or obstruction, which is good, but I was not having a problem at the time. SO ~ there you go!

NOW!  These PANTS!!!  I love them.  I made a 40, but took in the back seam and both back darts about 1/4 inch each, with an additional 1/4 inch taken off both sides at the waist.  The waist band is awesome as it is curved already, so no mods were needed there.  You can add the stripe at the leg seam or not, as you wish.  I already have plans for another pair!

Yes, I am standing in the sewing notion aisle at Michaels.  We were there FOREVER waiting for a frame!!  But, we made good use of our time!!!

It is strange.  I feel that some of my clothes are contaminated.  Ruined by use during miserable, nasty times (ergo the need for new lounge/sleepwear) or from one too many trips to Tampa for bug juice, scans or hours in treatment units.  At other times, clothing becomes your protection.  Your armor to preserve and shield, to keep you standing while the world around you crumbles.  Sew!  I shall proceed with my planned Italian wardrobe.  And while the pieces will not see Italy anytime soon, if ever ~ I think they will carry me far.  Live, love, travel and sew - chaotically!  Much love, les

Study in support of PET/CT Surveillance in Stage III melanoma patients

How often to scan/monitor Stage III melanoma patients is a bit unclear and difficult to get insurance to pay for.  This post starts with my own rant about BCBS denying coverage (initially) of an ANNUAL (Finally!  Annual!  After years of CT scans to neck, chest, abdomen and pelvis with MRI's of the brain every 3 months!!!) MRI of my brain (ME!  A melanoma brain met survivor!!) but more importantly includes a message "The Need to Demand Scans in Melaland!" from an amazing lady, the Queen of Melanoma herself, dear Carol Taylor toward the bottom of the post: And then there's me....   

Diagnosed as Stage IIIB in 2003, my scan surveillance was rather random.  There were 2 or 3 PET scans here and there.  But, for the most part I was followed by roughly every 6 month chest X-rays. One such film in 2009 showed a glump of "something" in my bronchus...but since I was an asthmatic we watched and waited, because, as I was emphatically told, "Melanoma never looks like that."  Long story short, a bronchoscopy in 2010 told the tale, "Yes!  Melanoma CAN look like that."  A brain MRI just after showed a brain met as well.  I had NO symptoms.

Now there is this....

PET/CT surveillance detects asymptomatic recurrences in stage IIIB and IIIC melanoma patients: a prospective cohort study. Madu, Timmerman, Wouters, et al.Melanoma Res. 2017 Feb 20.

AJCC stage IIIB and IIIC melanoma patients are at risk for disease relapse or progression. The advent of effective systemic therapies has made curative treatment of progressive disease a possibility. As resection of oligometastatic disease can confer a survival benefit and as immunotherapy is possibly most effective in a low tumor load setting, there is a likely benefit to early detection of progression. The aim of this pilot study was to evaluate a PET/computed tomography (CT) surveillance schedule for resected stage IIIB and IIIC melanoma. From 1-2015, stage IIIB and IIIC melanoma patients at our institution underwent 6-monthly surveillance with PET/CT, together with 3-monthly S100B assessment. When symptoms or elevated S100B were detected, an additional PET/CT was performed. Descriptive statistics were used to evaluate outcomes for this surveillance schedule. Fifty-one patients were followed up, 27 patients developed a recurrence before surveillance imaging, five were detected by an elevated S100B, and one patient was not scanned according to protocol. Eighteen patients were included. Thirty-two scans were acquired. Eleven relapses were suspected on PET/CT. Ten scans were true positive, one case was false positive, and one case was false negative. All recurrences detected by PET/CT were asymptomatic at that time, with a normal range of S100B. The number of scans needed to find one asymptomatic relapse was 3.6. PET/CT surveillance imaging seems to be an effective strategy for detecting asymptomatic recurrence in stage IIIB and IIIC melanoma patients in the first year after complete surgical resection.

Melanoma should be battle enough for anyone.  However, all you melanoma peeps out there are going to have to fight for the care you deserve.  On a positive note, with immunotherapy, targeted therapy and myriad treatment combinations providing real hope of effective options that can render folks stable or NED for years, the plight of Stage III melanoma patients is FINALLY getting some attention from researchers.  Keep pushing peeps.  The Queen and I have been pushing for years. Come on in...the water's...well...wet!!  But, together we can make a difference.  We have to!!! - c  

Melanoma Neverland....

Apart from multiple extremely smelly people on the planes, the trip to and from Tampa was no problem. It wasn't 'sunny' Florida, being rather cloudy and dreary, but it was much warmer than the weather here. Moffitt Cancer Center is a huge facility, a fact that is both reassuring and disconcerting all at once. Was processed efficiently. Free valet parking. (Way too many folks with cancer....don't you think?) Dr. Weber was very timely, very frank, and much like his video personality. Completed a full physical...YUCK!!...not that I would do any differently were I in his position! Dr. Weber was fully aware of all my history. (Brent had overnighted all my records, scans, etc. a couple of days prior per Weber's request, but I didn't know if they would really be reviewed before my arrival or not.) He had some questions about the tonsil issue. What had it felt like? How had I found it? Took a complete history. Then, he told us that I looked like I would be a great candidate for his trial once I repeated the scans and got the remaining lab that was needed. Brent and I began to look confused since I had had the needed lab drawn the week prior on Thurs and the MRI and CT scans done on the Friday prior. We told him that was the case and also informed him of the met that was reported on the MRI. He immediately got someone working on finding the results of the lab work and an hour later it turns out that I have the antigen as well as the subtype needed for the study. He sent someone over to his office to look for the missing CD when Brent insisted that the CD had been included in the packet he sent and it was determined that the last CD just didn't get loaded on the computer for review.

During the wait for all of this, Weber sits down and just starts going over my options....all of them. Other drugs.....none. They are either not available or ineffective. Talks about Timadar and whole brain radiation. Dismisses it as not effective. Ipi....good but not yet available. Other studies....I don't qualify....either they don't want anything present in the brain at all OR they want measurable disease and 3mm is not large enough to consider "measurable". I would have to wait for it to grow and then still may not qualify since researchers don't typically want folks with brain mets in their studies at all. I could do stereotactic radiation as I did before and then enter his study 6 months or so later. That is so because (and this was the case with my scans) when follow up scans are done, it takes 6-9 months for the area to quit lighting up. Until it does, they can't say for sure that all the tumor is gone and he wouldn't be able to let me in until then. During that time, he doesn't like the fact that I would go untreated. Because in order to get into the study, I not only have to get rid of that lesion, I can't grow another. He tells us that I am in Melanoma Neverland. Meaning, that until I get less, or more, disease.....I can't get any drugs that might prevent the development of additional disease. He says that if it were him, and at first I don't know if he means himself as the patient or himself advising me....though it becomes clear that he means if he were in my position....he would have the lesion surgically removed. That way, it is gone. Within 4 weeks I could be in the study, getting drugs that might prevent further tumor growth. At about that time, someone advises him that the CD has been found and loaded. He says we can go if we need to catch our flight and he'll give us a call...but Brent tells him that we are here to get all the information possible and that our flight is not until Sat. He tells us to sit tight and that he is going to call a neuro friend of his to look at the scans as well as radiologists to take a look. Off he goes....

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.

Bottom line = I think it is a met. I also think that Weber is trying to cut me a break. I can take care of this lesion...it's hell....but I can do it. The problem is, the rest of me, continues on....untreated. Not that Weber's drug combo is perfect. So far, it helps only about 1/3 of the patients who have had it. The side effects are less severe than those with ipi....at least in the small population who have taken it. And Weber believes, that like ipi, it has effects on brain mets. However, he is very straight forward....again disconcerting....but for me....it is what I prefer. He is very frank in that I am taking a risk with his study. He thinks the drug will help me....but it is a study. He can't be sure. That is why he is doing the study. He thinks that I will be better off with treatment for my lesion, the rest of my brain, and the rest of me in general. But he can't be sure. I asked, given the question mark in my brain, would he scan me sooner than the scans incorporated in the study at the 3 month point. He is very clear that he would not. If they were to scan me in say, 6 weeks, and the lesion in my brain is larger, then I am off the study....with no better options than I have today, and no chance of medication. Yet, it is a risk because in 3 months, my lesion could grow....but as I see it....I would be just where I am now....though out time, energy, money, with some side effects, and with a bigger lesion. But....still...with a lesion in my brain that I could have irradiated or surgically removed.

Also, somewhere in all this...we find out that if this treatment fails (and I grow additional lesions) I could still receive ipi. However, if I were to take ipi first, I would not get to take PD-1 and the vaccine (even if, in the years to come, they are found to be a remarkable cure!). The FDA has, in its wisdom, decided that the cumulative effects would be too great. However, that makes no sense to me (and especially to Weber) because to agree with that you would have to redo all mathematical laws, not to mention common sense, that additive effects can occur in BOTH directions! Bottom line, I can do ipi later if needed, but if I do ipi now, I will never have PD-1 as an option.

So what to do? I agreed. Partly because I can withdraw at any time. Partly because it was 5pm and I needed a CXR, lab, and an EKG to be completed before acceptance and if I waited to think on it over the weekend...I would still have to get that done and read, etc, etc. And....I am in a real time crunch. I have to start treatment within 28 days of my last scan (and at this point I am already down to 21 days) if I am going to do this and Christmas and New Year's (i.e. office is closed on 2 Fridays) fall within that time frame. And, NOBODY wants another scan of my head done, if I am going to participate in this study!!!!! After that I was whisked away, and a chest x-ray, EKG, and labs were done all within 20-30 minutes. The nurse in charge of the study is to call me Monday with my start date.

Because on your first and last session, you have to have leukophoresis completed (a process where 2 IV's are started and blood is withdrawn from one, sent to a machine to withdraw white blood cells then returned to you in the other IV) so that they can tell if the meds jump started your white cells like they hope, it requires scheduling that as well as your treatment. Therefore, what with the holiday issues, it is not clear what day they could get my treatments started. However, after I get situated and the holidays are past, I will be able to have my treatments on Fridays, so I am glad about that.

In any other world, this sucks. However, in melanoma world, when it is compared to being dead, someone digging around in your brain, or have things drilled into your skull...this looks pretty do-able! As Brent put it, we are in Melanoma Neverland, but this may be a door out.

There's a reason they're called melanoma WARRIORS!!!!!!!!!!!!!

Yes, we have the occasional navel watcher.  The one with a hangnail....who starts yelling:  "Oh, my goodness!!  I have some peeling skin at the edge of one finger!!  What does that mean?  Do I have melanoma/side effects/a brain tumor????"  And those, who have been through their own significant difficulties...but were fortunate enough to come out the other side...who when faced with their own misconduct shout, "I have PTSD!!!  What am I to do?"  So....to the first I might be inclined to answer...."Perhaps so (to the brain tumor) if you think it seems realistic to focus on a hangnail!"  And to the later..."Quit being an ass!  You're a lucky bug (compared to many)!  Get over yourself!!!"  Yeah, I know....I'm not a very nice or sympathetic person.  Hey!!!  Maybe melanoma made me that way!!!  Nah....It's all just me!!!

However, far more often I am struck by the deep caring nature and incredible strength the folks I've come to know and love with melanoma CONTINUALLY exhibit.  I first wrote about some of these souls in 2012:  Oh, the people you'll meet....  About Patti, 9TS, Alisa, Eric, and other beautiful lives in 2015:  Melanoma kills....the best people  About the amazing Brit, Lori Murdock, later that year:  Merde again!  And most recently, my ode to the dearest, sweetest, bravest man I never met.  Dear sweet Artie.  His 'handle' - arthurjedi007 - on MPIP said it all:  Artie: A beautiful soul, amazing knight

Despite a very rough week (months for others) for some of my amazing melanoma peeps, I have not heard one word of complaint.  Not one whine.  Some shock, some sadness. But mostly, an absolute determination to move forward in the best way they can and LIVE every minute.  Here are a few of their stories...  {A writer's note:  Should the details of the stories that follow have errors in order of findings or treatments...the error is all mine.  However, in my defense, I remind you ~ the stories these peeps share are NOT of their own problems and troubles.  THAT is NOT their focus...so piecing together the details of their melanoma journey was a bit of a challenge...even having known them for years.  I think that says a lot right there!!!}

To start the week with a good note...despite what had to be a harrowing build up...my brother-from-another-mother, Stevie...who has been dear to me since 2011....began his melanoma journey in 1994 with a cutaneous primary.  He developed a lung nodule, removed surgically, in 2011...joining me and others as Stage IV, yet NED, before the FDA approval of BRAFi, ipi, or anti-PD1.  He ended up doing IL2 that same year, with additional surgery to a nodule in his trachea. Five or so brain mets were zapped in 2014 and he began BRAF/MEK with a good response.  Three more brain mets zapped in 2015 and side effects to his BRAFi combo led to a break, a modified dosing schedule, and eventual basic stability of all bits and bobs with a switch to TAF/MEK.  In the months leading up to July he had been watching scans that were showing slow "growth" at the site of a previously zapped brain met and was making plans for a craniotomy to deal with the spot if scans continued to show growth.  Luckily, they did not.  Scans remained stable...so the process continues and he joins Dick K as an example of long term survivorship on BRAFi.  But all of that.....is not the important stuff.  The important stuff is that he is an amazing guy.  A great husband and dad, whose eldest is heading out to college this month, and two other young teens will be heading back to school very soon.  He is always supportive.  Gets me and makes me smile.  Puts up with my bossy attitude.  An awesome man.  A beautiful friend.

There's Bennie.  A big guy, with an even bigger smile from Texas.  Great dad of two young kids....just started building a house after completing an arm of my trial...Stage IV, NED, nivo/ipi.  Bennie was diagnosed with melanoma in 2005, but became Stage IV in 2013 with mets to lungs, liver, and hip.  After some surgery and IL2 and later, Zelboraf, became NED that September and was even able to go off meds as they were causing pretty miserable side effects.  But, in December of 2013 a brain met showed up on scans and had to be zapped.  Around that time, he and his wife found Moffitt and Weber.  Testing leading up to his trial participation was incredibly stressful as he had to be NED in order to qualify for the ipi/nivo combo offered.  They made it!!!!  I have never seen a pic of Bennie with anything less than a big smile on his face.  Yet, I know how difficult these past years must have been.  He had small children.  He had to take IPI AND nivo.  And he traveled to Tampa for 2 YEARS from his home in Texas...finishing his trial...still NED, in May of 2016.  However, this week, he got the results of his 3 month post trial scans.  Another brain met.  He is making plans for zappage and figuring out what to do next.

There is the ever beautiful, grace and humor filled, QUEEN of melanoma - Dear Reverend Carol Taylor.  She dealt with a cutaneous melanoma and positive nodes in 2008.  Removal of same left her with lymphedema for which she wore tattoo printed compression sleeves that got her some looks back in the day before everybody was tatted up, attention she parleyed into great teaching, sharing, and learning experiences.  She has spent years being the most amazing voice of advocacy.  Her posts from 2010 to 2015 on her letsgivethanks - an Attitude of Gratitude blog, along with her Melanoma Prayer Center, gave folks just what they needed from deep love and encouragement to a bit of a kick in the pants as required. After all those years as Stage 3b, in September of 2015, she progressed to Stage IV with mets to lungs, brain and sacrum.  After surgery to one brain met and radiation to the other three along with her spinal met, she started the ipi/nivo combo...whose side effects landed her in the hospital...twice.  With that option shot,  she started Zelboraf and was doing pretty well.  This June, scans revealed the development of a blood clot in the brain.  She has exited ever gracefully, stage left, from her position as reverend and her blog....yet her posts from her beautiful heart...remain there to inspire us all.

I am contacted by several new peeps a week with questions about treatment and melanoma.  When I am....I try to look at this blog with fresh eyes....wondering what it is folks see. I've told B and others that I mostly appear to be a crazy person.  I can see where there is some good info for folks...but I would walk away thinking..."That woman is nutters!!!"  B (and others) when told of my conclusion, had a moment where he looked as though he might argue...but...changed his mind!!!  I understand that.  We are honest with each other.  However, there are those in melanoma land who AREN'T nutters!  They are always calm, and wise, and measured in their outlook and response to others!!!!  Brian P is THAT guy.  Another man in the prime of life, with two young kids, has been working toward his goal of resuming his career as a pilot and buying a home ~ activities sidetracked by melanoma.  He was Stage 2 in 2006.  Drew the short straw and did interferon in an ipi vs interferon trial in 2011.  Mets to his intestine led to surgery in 2013.  Positive nodes in the abdomen led to participation in a sequential anti-PD1/ipi trial in 2013.  He had been stable for 2 years, 1 year off treatment, when just this week....routine scans showed positive nodes. Surprise, disappointment....certainly.  But, mostly...Brian just plows forward...seeking info from Dr. Weber (who actually provided some hopeful news, in that perhaps Brian may be dealing with an immunotherapy ditzel...along with a diatribe on the ineptitude of radiologists...been there, heard that....as well as some reasonable treatment options should they be needed) to determine what to do next.

And there's my sweet, dear Joshie!!!  ANOTHER young guy with a couple of kids and a great family.  He's honest and real...and sick and tired at times...just like the rest of us.  But, with a fighting spirit and voice of kindness to others of which there is no like. Initially diagnosed in 2011 with some recurrences at the original site....a scan in 2013 showed lung mets.  Ipi followed by IL2 was completed.  He remained NED until 2015 when progression occurred in his lung, liver and pancreas.  He attacked with ipi and surgery.  In between he had blood cells harvested for a cutting edge TIL's procedure followed by IL2 and ipi that he will be starting soon.  He admits to worry and confusion and desperation.  But shows us all how to move forward - in spite of EVERYTHING!

While by no means a comprehensive list, these are dear ones who have inspired me and touched my soul.  They are some of the best people this world has to offer.  The fact that they also have melanoma is just a 'BLECH!' on their day and of course, a great concern to those who love them. I want each of them to know how much their example means to me and many others.  I wish each of you ~ hope and peace and love....along with a treatment that kicks melanoma to the curb.  WARRIORS, indeed.  - love, c

Ditzels!!! Ancillary findings on routine melanoma scans!

Yep.  Ditzels are a thing!!  Incidentals found during routine radiologic studies.  I've found gall stones, sparkly doo dads in my thyroid, and uterine fibroids...all of which were doing me NO HARM...in the process of years of scans and surveys to follow my melanoma.  Alternatively, a routine chest x-ray in 2010 (of all simple things) revealed a lesion within the right main bronchus of my lung that no one could believe was melanoma for months - until it was finally biopsied via a bronchoscopy.  Then there's the funny looking, "probably mucoid", appendix that showed up on my final melanoma scans in August that turned out to be ex-goblet cell carcinoma (GCC)!!!!  And I am not alone...

False-Positive Results and Incidental Findings with Annual CT or PET/CT Surveillance in Asymptomatic Patients with Resected Stage III Melanoma.  Nijhuis, Dieng, Khanna, et al.  Ann Surg Oncol. 2019 Mar 25. 

The aim of this study was to quantify false-positive and incidental findings from annual surveillance imaging in asymptomatic, American Joint Committee on Cancer stage III melanoma patients.

This was a cohort study of patients treated at Melanoma Institute Australia (2000-2015) with baseline computed tomography (CT) or positron emission tomography (PET)/CT imaging and at least two annual surveillance scans. False-positives were defined as findings suspicious for melanoma recurrence that were not melanoma, confirmed by histopathology, subsequent imaging, or clinical follow-up, while incidental findings were defined as non-melanoma-related findings requiring further action. Outcomes of incidental findings were classified as 'benign' if they resolved spontaneously or were not seriously harmful; 'malignant' if a second malignancy was identified; or 'other' if potentially harmful.

Among 154 patients, 1022 scans were performed (154 baseline staging, 868 surveillance) during a median follow-up of 85 months; 57 patients (37%) developed a recurrence. For baseline and surveillance imaging, 124 false-positive results and incidental findings were identified in 81 patients (53%). The frequency of these findings was 5-14% per year, and an additional 181 tests, procedures, and referrals were initiated to investigate these findings. The diagnosis was benign in 109 findings of 124 findings (88%). Fifteen patients with a benign finding underwent an unnecessary invasive procedure. Surveillance imaging identified distant metastases in 20 patients (13%).

False-positive results and incidental findings occur in at least half of all patients undergoing annual surveillance imaging, and the additional healthcare use is substantial. These findings persist over time. Clinicians need to be aware of these risks and discuss them with patients, alongside the expected benefits of surveillance imaging.

So, yeah.  Right now, with imaging being the preferred method of follow-up for melanoma peeps, at least half of us will experience findings that will have to be investigated (to some extent) that will NOT be melanoma!  DO NOT FREAK OUT!!!  Unfortunately, this is to be expected.  Still, we must be diligent and pursue needed answers when weird things show up.  All the more reason for putting blood assays that test for melanoma specifically and tangentially into practice sooner rather than later!!!  Here's the latest on that front (with a zillion links within) posted just last month:  Circulating tumor DNA (ctDNA)  

Hang tough melanoma peeps!  Ours is not an easy path.  But, it is one that we can not only walk down, but run through!!! - c

More important points to keep in mind when reading scans!!!!

We have already learned that responses to immunotherapy may be delayed; that there can be pseudoprogression....where tumors look as if they have grown due to the influx of fighting T cells and inflammation and mayhem that causes.  But now, there's this:

Residual FDG-PET metabolic activity in metastatic melanoma patients with prolonged response to anti-PD-1 therapy.  Kong, Menzies, Saunders, et al. Pigment Cell Melanoma Res. 2016 Jun 22. 

FDG-PET scans were performed on twenty seven patients with unresectable stage IIIC or IV melanoma after prolonged treatment with anti-PD-1 antibodies to examine the hypothesis that patients with prolonged response to treatment may have metabolically inactive lesions by FDG-PET. Scans were performed at a median of 15.2 months (range 12-29 months) after starting treatment. Overall 15/27 (56%) patients had a positive FDG-PET scan. Eight patients with positive scans underwent biopsy; 5/8 (62%) were melanoma and 3/8 (38%) were immune cell infiltrates. Of the 12 patients with negative FDG-PET scans, 6 had residual CT visible lesions, 5 have ceased treatment and none have recurred with follow up of 6 to 10 months. Patients with residual metastases after a prolonged period without progression on anti-PD-1 therapy may have metabolically inactive lesions. Isolated metabolically active lesions in clinically well patients may reveal immune cell infiltrates rather than melanoma.

 FYI! - c

Stage III melanoma ~ 3 interesting reports:

When I was diagnosed with Stage III melanoma in 2003, I had affected bits and pieces surgically  removed, but there wasn't much else I could do - nothing that was effective anyway.  Thank goodness, the life of a Stage III melanoma patient is different now that viable, effective adjuvant treatments (Here's just a "few" posts on that topic: Adjuvant treatments in melanoma ) are available!!!  Or....are they?????????

Disparities of Immunotherapy Utilization in Patients with Stage III Cutaneous Melanoma: A National Perspective.  Al-Qurayshi, Crowther, Hamner, et al. Anticancer Res. 2018 May.

Immunotherapy combined with surgery is associated with better survival than surgery alone in patients with advanced melanoma. This study examined the utilization of immunotherapy in relation to population characteristics and the associated survival benefit.  This was a retrospective cohort study utilizing the US National Cancer Database. The study population included 6,165 adult patients (greater than/= to18 years) with stage III cutaneous melanoma (median follow-up=32 months).  A total of 1,854 patients underwent immunotherapy in addition to surgery, which was associated with a survival benefit over surgery alone. Older age, presence of comorbidities, Medicaid/Medicare insurance, and living in a community with lower average education level were associated with less immunotherapy utilization. No statistically significant racial disparity in immunotherapy usage was found.  Compared to other demographic factors, insurance status was associated with the greatest disparities in immunotherapy utilization and mortality for patients who underwent surgery for advanced melanoma.

Does this not explain why I am so pissed off??  Does this clarify my hatred of insurance companies?  Does this not elucidate ONE of the reasons I continue to yell and scream????  Health care is a human right...NOT a privilege!!!!!!!!!!  Okay...slow deep cleansing breaths....

Now, there's this ~

Adjuvant Pembrolizumab versus Placebo in Resected Stage III Melanoma. Eggermont, Blank, Mandal, et al. N Engl J Med. 2018 Apr 15. 

The programmed death 1 (PD-1) inhibitor pembrolizumab has been found to prolong progression-free and overall survival among patients with advanced melanoma. We conducted a phase 3 double-blind trial to evaluate pembrolizumab as adjuvant therapy in patients with resected, high-risk stage III melanoma. 

Patients with completely resected stage III melanoma were randomly assigned (with stratification according to cancer stage and geographic region) to receive 200 mg of pembrolizumab (514 patients) or placebo (505 patients) intravenously every 3 weeks for a total of 18 doses (approximately 1 year) or until disease recurrence or unacceptable toxic effects occurred. Recurrence-free survival in the overall intention-to-treat population and in the subgroup of patients with cancer that was positive for the PD-1 ligand (PD-L1) were the primary end points. Safety was also evaluated.

At a median follow-up of 15 months, pembrolizumab was associated with significantly longer recurrence-free survival than placebo in the overall intention-to-treat population (1-year rate of recurrence-free survival, 75.4% vs. 61.0%) and in the subgroup of 853 patients with PD-L1-positive tumors (1-year rate of recurrence-free survival, 77.1% in the pembrolizumab group and 62.6% in the placebo group). Adverse events of grades 3 to 5 that were related to the trial regimen were reported in 14.7% of the patients in the pembrolizumab group and in 3.4% of patients in the placebo group. There was one treatment-related death due to myositis in the pembrolizumab group. 

As adjuvant therapy for high-risk stage III melanoma, 200 mg of pembrolizumab administered every 3 weeks for up to 1 year resulted in significantly longer recurrence-free survival than placebo, with no new toxic effects identified.

THIS is one of THOSE reports!  You know the type.  The ones that take a good deal of time, effort, and money to tell us that:  Obesity is found in children who ingest more calories and get less exercise!  OR:  Teen depression is more frequent in children who have fewer friends!  So, not surprisingly...folks in this study who were given anti-PD-1 (in this instance it was pembrolizumab/Keytruda....we have similar reports for nivolumab/Opdivo...) did better than folks who were given placebo!  Well, duh!!!  Perhaps the most important point made in this study is that folks who were PD-L1 positive had a recurrence free survival at 1 year of 77% when treated with pembro. While the overall RFS at 1 year for those treated with pembro, no matter PD-L1 status, was basically the same at 75%.  This could be better broken down and might actually make the study worthwhile (and maybe it is in the whole article) as the overall pembro responders obviously included both PD-L1 positive and PD-L1 negative patients.  BUT...even with this limited data...it is clear that anti-PD-1 worked in some ratties whose tumors were PD-L1 positive and in some whose tumors were not!!!

Now, this...

Surveillance imaging with FDG-PET/CT in the post-operative follow-up of stage 3 melanoma. Lewin, Sayers, Kee, et al. Ann Oncol. 2018 Apr 12.

As early detection of recurrent melanoma maximizes treatment options, patients usually undergo post-operative imaging surveillance, increasingly with FDG-PET/CT (PET). To assess this, we evaluated stage 3 melanoma patients who underwent prospectively applied and sub-stage-specific schedules of PET surveillance.

From 2009, patients with stage 3 melanoma routinely underwent PET +/- MRI brain scans via defined schedules based on sub-stage-specific relapse probabilities. Data were collected regarding patient characteristics and outcomes. Contingency analyses were performed of imaging outcomes.

170 patients (stage 3A: 34; 3B: 93; 3C: 43) underwent radiological surveillance. Relapses were identified in 65 (38%) patients, of which 45 (69%) were asymptomatic. False-positive imaging findings occurred in 7%, and 6% had treatable second (non-melanoma) malignancies. Positive predictive values (PPV) of individual scans were 56% - 83%. Negative scans had predictive values of 89% - 96% for true non-recurrence (negative predictive values (NPV)) until the next scan. A negative PET at 18 months had NPVs of 80% - 84% for true non-recurrence at any time in the 47-month (median) follow-up period. Sensitivity and specificity of the overall approach of sub-stage-specific PET surveillance were 70% and 87%, respectively. Of relapsed patients, 33 (52%) underwent potentially curative resection and 10 (16%) remained disease-free after 24 months (median).

Application of sub-stage-specific PET in stage 3 melanoma enables asymptomatic detection of most recurrences, has high NPVs that may provide patient reassurance, and is associated with a high rate of detection of resectable and potentially curable disease at relapse.

Sorry, but again, Well, Duh!!!!  Stage III patients who were scanned, had recurrences found early, even when asymptomatic and therefore had "potentially curable disease".  Yet, Stage III patients (and yes...even many of us Stage IV peeps) have to fight tooth and toenail to have needed scans done and paid for by our insurance plans.  Yes, you can bet I've yelled about this as well:  The need for scans and appropriate follow-up!  The first two posts are incredibly pertinent as they include excerpts written by Rev. Carol Clark Taylor, formerly of the blog "Attitude of Gratitude", and now simply "The Queen of Melanoma", to whom we all give unending  thanks...for her grace, fortitude and the incredible advocacy she has maintained for years for all of us!!!  

Despite my current frustrations with problems in the "system" and management of melanoma generally, we have come a LOOOOOONG way, baby!  In 2003, I couldn't even fuss about these things because they didn't exist!!!  Today, THEY DO!!!  Now, we must to work to find even better treatment and follow-up options and make sure they are a reality for ALL of those who need them!!! - love, c

Immunotherapy and pneumonitis

I am certain I dealt with pneumonitis while taking nivolumab/Opdivo for 2 1/2 years in my trial.  I noted this back in the day:

Dose 7 = 3/25/2011
   My scans at the 3 Month evaluation showed "ground glass appearance" in the right lower lobe of my lung.  I was also having wheezing at the time.  Scans were reviewed by the tumor board at Moffitt and determined to be related to my asthma or an inflammatory process that Weber had seen before in patients on ipi.  Wheezing gradually improved on albuterol and inhaled corticosteroid; symbicort. Perhaps most importantly, the 3mm something???? in my brain on my MRI when I started is GONE!

Additionally, when reviewing my records (created in this blog!!!) it was very clear that my infusions were directly followed by bouts of wheezing. It never got so bad that I had to stop my infusions or required systemic steroids, though my nurses often threatened me with them!  I dealt with my wheeze using albuterol as well as inhaled steroids (symbicort or pulmicort).  My history is a little hazy given my asthma and my work with little germy critters, but as B recently told my local onc, "Celeste, definitely experienced pneumonitis.  But, she and Weber are tough as nails, so they just powered through!"  And, as noted above, my scans were at one point read as having a "ground glass appearance"...the classic radiologic description for pneumonitis....but that's not always how pneumonitis rolls, as this latest article indicates: 

PD-1 inhibitor-related pneumonitis in advanced cancer patients: Radiographic patterns and clinical course.  Nishino, Ramaiya, Awad, ... Hodi, et al.  Clin Cancer Res. 2016 Aug 17.  

The purpose of this study was to...investigate the clinical characteristics, radiographic patterns, and treatment course of PD-1 inhibitor-related pneumonitis in advanced cancer patients.  Among patients with advanced melanoma, lung cancer, or lymphoma treated in trials of nivolumab, we identified those who developed pneumonitis. Chest CT scans were reviewed to assess extent, distribution, and radiographic patterns of pneumonitis.  Among 170 patients treated in 10 different trials of nivolumab, 20 patients (10 melanoma, 6 lymphoma, 4 lung cancer) developed pneumonitis. Five patients received nivolumab monotherapy and 15 received combination therapy. Median time from therapy initiation to pneumonitis was 2.6 months. Radiographic pattern was cryptogenic organizing pneumonia (COP) in 13, nonspecific interstitial pneumonia (NSIP) in 3, hypersensitivity pneumonitis (HP) in 2, and acute interstitial pneumonia (AIP)/acute respiratory distress syndrome (ARDS) in 2 patients. AIP/ARDS pattern had the highest grade, followed by COP, while NSIP and HP had lower grade. COP pattern was most common in all tumors and treatment regimens. Most patients (17/20;85%) received corticosteroids, and 3 (15%) also required infliximab. Seven patients restarted nivolumab therapy; two of them developed recurrent pneumonitis and were successfully retreated with corticosteroids. One of the patients experienced a pneumonitis flare after completion of corticosteroid taper without nivolumab retreatment.  PD-1 inhibitor-related pneumonitis showed a spectrum of radiographic patterns, reflecting pneumonitis grades. COP was the most common pattern across tumor types and therapeutic regimens. Most patients were successfully treated with corticosteroids. Recurrent pneumonitis and pneumonitis flare were noted in a few patients.

(Found this article as well....so it is being added as a late addition to this post...)

Incidence of Programmed Cell Death 1 Inhibitor-Related Pneumonitis in Patients With Advanced Cancer: A Systematic Review and Meta-analysis.  Nishino, Giobbie-Hurder, Hatabu, Ramaiya, Hodi.  JAMA Oncol. 2016 Aug 18.

Programmed cell death 1 (PD-1) inhibitor-related pneumonitis is a rare but clinically serious and potentially life-threatening adverse event. Little is known about its incidence across different tumor types and treatment regimens.  To compare the incidence of PD-1 inhibitor-related pneumonitis among different tumor types and therapeutic regimens.  A PubMed search through November 10, 2015, and a review of references from relevant articles. For the PubMed search, the following keywords or corresponding Medical Subject Heading terms were used: nivolumab, pembrolizumab, and PD-1 inhibitor.  Twenty-six original articles of PD-1 inhibitor trial results were identified. Among them, 20 studies of melanoma, non-small cell lung cancer (NSCLC), or renal cell carcinoma (RCC) were eligible for a meta-analysis.  The data were extracted by 1 primary reviewer and then independently reviewed by 2 secondary reviewers following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Comparisons of the incidence were based on marginal, exact generalized linear models with generalized estimating equations.  Incidence of all-grade and grade 3 or higher pneumonitis and pneumonitis-related deaths.  Twenty studies of single-tumor-type trials of PD-1 inhibitor (12 melanoma studies, 5 NSCLC studies, and 3 RCC studies) (a total of 4496 unique patients) were included in the meta-analysis. The overall incidence of pneumonitis during PD-1 inhibitor monotherapy was 2.7% for all-grade and 0.8% for grade 3 or higher pneumonitis. The incidence was higher in NSCLC for all-grade (4.1% vs 1.6%) and grade 3 or higher pneumonitis (1.8% vs 0.2%) compared with melanoma. The incidence in RCC was higher than in melanoma for all-grade pneumonitis (4.1% vs 1.6%) but not for grade 3 or higher pneumonitis. Four pneumonitis-related deaths were observed in patients with NSCLC in the monotherapy group. Pneumonitis was more frequent during combination therapy than monotherapy for all-grade (6.6% vs 1.6%) and grade 3 or higher pneumonitis (1.5% vs 0.2%) in melanoma, with 1 pneumonitis-related death during combination therapy. Multivariable analyses demonstrated higher odds of pneumonitis in NSCLC for all-grade and grade 3 or higher pneumonitis and in RCC for all-grade pneumonitis compared with melanoma. The combination therapy had significantly higher odds than monotherapy for all-grade and grade 3 or higher pneumonitis. The incidence of PD-1 inhibitor-related pneumonitis was higher in NSCLC and RCC and during combination therapy. These findings contribute to enhance awareness among clinicians and support further investigations to meet the clinical need.

Nothing is ever simple when dealing with melanoma, its treatments, or their side effects!!!!  If you have a wheeze or cough...talk to your doc!!!  Hang in there melanoma peeps!! - c

Live chaotically!!! ~ Refashion #2 ~ and a buried lead from weird, wacky, melanoma world!!!!

In the (lately) ongoing series of posts that are the height of crunchy, artiness combined with the mother of invention (necessity) and a bit of elbow grease (often icky effort) there is this ~ Need something to hold your music now that you're gonna revive your piano skills???

Well, you have this slightly moldered and faded basket (now cleaned and left in the sun for a couple of days)!!!

Apply some stain.  Let dry.  Rub (repeatedly) with a clean dry cloth when it doesn't "dry"!!!!

And there she be!!!  Quiet, unassuming, utilitarian.  But pretty and useful just the same!

Have an asparagus fern outgrowing its previous situation?  Got an old stool?  This one was from a local yard sale.  Failed to get a pic of the original. But, a couple of coats of blue paint and you are set!!!

In the refashioning of me ~ I've been out of work in Greenland for two weeks!!!  There was a to-do list!  You would not believe the stuff that's been accomplished around here!!!  I was so excited that it had only two more items left to complete before an amazing Italian vacay...leaving several weeks of reading, music and sewing!!!!  Well, when you live in weird, wacky, melanoma world, you never know what might happen next.

Monday, I had my now ANNUAL brain MRI and CT's of neck, chest, abdomen and pelvis.  I didn't even have to go ballistic on some A$$hole at BCBS!!!  All studies were approved with no talk of, "These studies are not needed due to your history of 'skin disease'!"  Three sticks and one sluggish lab tech later - while driving home after a late breakfast that included a large hair, unlike mine,  laying across the potatoes that accompanied a bacon, egg and avocado sandwich from First Watch, I got a call from my local oncologist.  "Hello!  Oh my goodness!!  Ummmm.  I mean, your scans were fine and your brain was fine in regard to melanoma, but you have an acute appendix."  I'm like, "No, I don't.  I don't even have a stomach ache (and that's saying something after a lot of contrast medium and the late breakfast I just had!!), much less a fever, vomiting, diarrhea...".  "No, really", she replied.  "I'm calling the surgeon now."

So, yesterday....I saw the surgeon.  The same dear one who set things straight years ago after a botched job with my initial primary in 2003 and dealt with my next melanoma crazy in 2007.  Now, just so you understand the wacky world that is melanoma follow-up, ditzelville as B calls it, after all the scans that I have had for the past 15 years, I now know that I have:
1.  Sparkly nodules in my thyroid.
2.  A shit ton of gall stones.
3.  A hole in the back of my head that no one can explain.  You can choose sequelae from a really bad fall down the stairs vs a brain met that resolved before it was noted.
4.  A uterine fibroid.
5.  Along with a few other bits and bobs that wax and wane over time.
BECAUSE....when you get scans....while looking for things that may do you harm, you inadvertently find doo-dads that may be important or just red herrings, that - if you lived in a normal world - you would never deal with at all, since you were not having any problems that warranted investigation!!!

Lots of folks in melanoma world freak the F@CK out when they get news of such things!  (Hell, lots of folks with nothing wrong with them or their lives stay in FREAK out mode!!!)  I've been here a long time.  And, I'm weird.  I don't freak out.  It's not fun to work through these things.  But, freaking out requires energy that I don't possess.  So, when Dr. Weber freaked out about my gall stones when I developed rectal bleeding and diarrhea - I had them evaluated.  They were fine and so was I.  In that vein - today I saw the surgeon.

He noticed the gall stones.  With no problems, didn't want to touch 'em with a ten foot pole.  The appendix, well....  Probably should come out.  It's bigger than on prior scans.  Probably a mucocele.  Often caused by 'nothing'.  Sometimes related to another icky, though less aggressive cancer.  And with my history, possibly related to melanoma...though...still...unlikely.

So, appendectomy scheduled for Thursday.  What the heck?!?  I'm between jobs and countries.  Let's get her done!

Refashion.  It's a thing.  I'm gonna miss you my dear little mucoid appendix!  Planning on some quality time together tomorrow!!! - c

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)...an 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 27^th I had stereotactic radiation to the brain, followed by right upper lobectomy of my lung on April 30^th.  

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 melanoma.org.  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