Monday, April 15, 2019

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 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

Sunday, April 14, 2019

Cades Cove restores my soul...

"What is sour in the house, a bracing walk in the woods makes sweet."  ~ Henry David Thoreau

Indeed it has ~ for many years, in many places, but none more lovely than walks with my bestie through Cades Cove, in the Smoky Mountains, Townsend, TN.

April 2015

June 2015

June 2015 - Gregory Bald

September 2015

November 2015

April 2016

October 2017

Our recent walk was no less lovely and refreshing...

The Middle Prong
Star Chickweed
Cut-leaved Toothwort 
Early Yellow Violet
Northern White Violet
Squirrel Corn
Sweet White Trillium

Ferns unfurling
"I took a walk in the woods and came out taller than the trees." ~ Henry David Thoreau

Wild Ginger
Sneaky Snake!!!!
Blue Phlox (Purple Phacelia was also beautiful in great swaths, especially along the roadways!)
Handsome Photog chasing a strutting Tom Turkey!!
Catesby's Trillium
Little Brown Jug
Trout Lily

Such a lovely surprise to come to a large field of these special lilies, along Lead Cove Trail where on previous walks we'd seen only one or two blooms.  We were  not the only appreciative fans!!!
Rue-Anemone and Spring Beauties
Spring Beauty
Crested Dwarf Iris
Bishop's Cap
Large Flowered Bellwort
Catesby's Trillium and THAT guy!!!
Beaked Violet
So pleased to have been able to hike our favorite loop in Cades Cove!!  Here, we are 1.8 miles up Lead Cove Trail where it intersects with Bote Mountain.  Take a left for 2.5 miles up and down along the ridge, then another left onto Finley Cane Trail for a gentle 2.6 miles back down to Laurel Creek Road.   I knew this little scrap buster would be a great hiking shirt!!! 
From the tiniest flowers to the great mountain peaks, this visit provided a much needed elixir for my soul.  While there were no bear sightings, it was a joy to share the woods with turkey, deer, song birds, various reptiles, a lone coyote, and my Bentie.  May the beauty of nature bring you peace this Sunday, wherever you may be. ~ les

Tuesday, April 9, 2019

Sew Chaotically! ~ The best travel dress! M7240

It is hard to beat a little BLUE dress!  Especially one that is super comfy,
with an interesting detail, that doesn't wrinkle, washes up well, and looks good with heels, sandals or even sneaks!  I stitched this up with no mods in the size medium using a substantial ribbed knit from JoAnn's, having previously used a coral version in this dress for Roo and in this Rumi tank.  The fabric holds its shape well without being stiff.  The length of the hem and sleeves can be adjusted as you wish and there are two neckline options.  I love this more dramatic one.  The perfect dress to throw on for a night on the town, a trip to Rome, or a run to the grocery!!!

Isn't that neckline pretty????

Pretty stoked about how it turned out.  Capsule travel wardrobe continues, for wherever I may go!  Sew Chaotically! ~ les

Saturday, April 6, 2019

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

Wednesday, April 3, 2019

DECREASED progression free survival in melanoma patients treated with antibiotics prior to or at start of immunotherapy!!!!

Our microbiome, made up by the cooties that live within our bodies that, depending on which sort they are, either help protect us from disease or make us more susceptible to it, has been a hot topic in pop culture (HA!!!, I crack myself up!!), PR and advertising campaigns for a wide variety of products, as well as medicine.  I've written a good deal about it over the past couple of years.  Here are links to two of the most recent posts with lots of links within:

March 2018: More shoo shoo! Or...intestinal flora and melanoma 

January 2018: Microbes again...and how they may be associated with improved response to anti-PD-1 for melanoma patients...and you might even laugh!!! 

Now, if it is so that our microbiome makes a difference in our health, and I believe it does, then it makes sense that if we do something (through diet or medicine) that kills off bacteria that work to our advantage, we are clearly putting ourselves at risk.  The problem is that not all bacteria do a body good!  Antibiotics have saved untold lives ever since Fleming discovered the mold contaminating his petri plates!!  Still, we have also learned that indiscriminate use of antibiotics in animals that become our food, as a treatment for viruses (which they DO NOT KILL!!!!!) and other inappropriate uses of these precious medications puts us at risk for the development of "super germs" for which we have no antibiotics to use against, as well as the destruction of "cooties" within us that PROTECT our health.  In regard to immunotherapy and melanoma treatment specifically, I wrote this in 2017:  Antibiotic use MAY decrease effectiveness of immunotherapy?????  Where I wrote in part: 

The article which discusses a study that looked at renal cancer patients on various immunotherapies (anti-CTLA-4, anti-PD-1, anti-PD-L1 and nivo specifically) and efficacy when patients had and had not been exposed to antibiotics is noted below, but here's the link:

I can only imagine the author intended to write "Dampen" rather than "Damper"!!!  (How is it that others are paid for writing this mess and I am not????  Hmmmm....) At any rate, data already theoretically supporting this premise is the idea that certain intestinal flora, bifidobacterium in particular, which would be killed off by certain antibiotics, promote the efficacy of was noted in this post:  Cooties in our gut keep us skinny, smart and cure cancer!?????

On the other hand...there is this on old antibiotic...though this is strictly relative to melanoma itself...NOT the use of immunotherapy (see the 2nd and 3rd articles in this post): EVERYTHING cures why do we have it??????

And, now...there's this:

Antibiotics are associated with decreased progression-free survival of advanced melanoma patients treated with immune checkpoint inhibitors.  Elkrief, Raichani, Richard, et al.  Oncoimmunology. 2019 Feb 18.

Background: The gut microbiota has been shown to be an important determinant of the efficacy of immune checkpoint inhibitions (ICI) in cancer. Several lines of evidence suggest that antibiotic (ATB) usage prior to or within the first month of ICI initiation negatively impacts clinical outcomesMethods: We examined patients with advanced melanoma treated with an anti-PD-1 monoclonal antibody (mAb) or an anti-CTLA-4 mAb alone or in combination with chemotherapy. Those receiving ATB within 30 days of beginning ICI were compared with those who did not receive ATB. Response rates as determined by RECIST 1.1, progression-free survival (PFS), overall survival (OS) and immune-related toxicities were assessed. Results: Of these 74 patients analyzed, a total of 10 patients received ATB (13.5%) within 30 days of initiation of ICI. Patients who received ATB 30 days prior to the administration of ICI experienced more primary resistance (progressive disease) (0% of the objective response rate compared to 34%), and progression-free survival (PFS) was significantly shorter (2.4 vs 7.3 months). Overall survival (OS) was also shorter; however, this was not statistically significant (10.7 vs 18.3 months). The multivariate analysis further supported that ATB administration was associated with worse PFS. Conclusion: These findings suggest that ATB use within 30 days prior to ICI initiation in patients with advanced melanoma may adversely affect patient outcomes.

Small numbers.  But the 10 folks, from the 74 advanced melanoma peeps examined, who were given antibiotics within 30 days of their immunotherapy, had more resistance to treatment, a shorter length of progression free survival (2.4 vs 7.3 months) and overall survival was shorter at 10.7 months vs 18.3 months. 

So...if you really NEED antibiotics, they may save your life and will certainly decrease misery. BUT, if you DON'T really NEED them...they can cause harm, in lots of ways.  For what it's worth. - c

Sunday, March 31, 2019

Springing forth like a wood poppy!!!

Things have been a bit rough around the edges in my world for a while now, but spring is springing!  And my sweet Bentie is making things happen!!!
When I say it might be nice to have a potting bench ~ He builds me the most amazing gardening work bench EVER!!!
When  we briefly discuss a foot path and a new flower bed for the front...

It appears!!!  Can you feel the beauty?  Soon it will not only be a lovely path, but one bordered by hosta, astillbe, irises, and coleus!!!  (I hope!!!)

In the back, I am so thrilled with the way my three little May Apples have multiplied!!! (I actually prefer to call them fairy pagodas!!!) Not to mention ALL the beautiful little wood poppies!!!!  I just loooooove them!

And because this fact seems unknown to some...
...just say'n!
Sadly, tonight some of my precious floral friends may feel the burn as it is to drop into the 20's!!!!!
B helped me cover as many things as we could.  Hang in there guys, life can get rough sometimes!!!
I am much inspired by my wood poppies.  They are adaptable, resilient, far stronger than they appear, filled with beauty and grace sweetly shared with any who care to look. 

I would like to be a wood poppy. Keep springing, everybody!!! ~ les