Sunday, February 17, 2019

A spring leaning update!


I think it's time!!!

Love my lenten roses!!!

  • Brent and I, along with 150+ hardy (hearty???) souls, spent yesterday morning at a rally in Chattanooga to remember those lost in the Parkland shooting last year, those murdered via gun violence DAILY in our country, and plan moving forward with common sense legislation to prevent more needless death and pain.  TODAY 8 children younger than 18 will die from gun violence in the United States, 39 will be shot and survive.  TODAY 96 Americans will die from gun violence.  Don't believe me?  Check out these and other horrible statistics here:  Key Gun Violence Statistics  We can do better.  We SHOULD do better!  We WILL do better!
  • To refresh my soul, I spent the chilly, drizzly afternoon going through my knit remnants!  Allocating tiny, irregular bits to my "POUF" stuffings, storing larger cuts with potential use as future contrasting neckbands and such, and piecing/cutting out two tops from same.  It was a bit of a puzzle!  We'll see how they turn out!
  • Earlier in the week, B (I mean, Willie!) and I removed ALL the dirt from our front raised bed, laid down wire mesh, returned the soil and added more!  Hopefully, this will stop tunneling critters from eating the roots of my plantings there.  I envision an incredible display of cosmos and pole beans in that bed this summer!!!
  • Beyond the gardening I've been working on - clearing brush and briers from wooded areas, moving hydrangeas, roses, peonies and a willow to new locals where they will hopefully be happier, refurbishing existing beds, transplanting propagated forsythia, taking down useless fencing - honeysuckle and gooseberry plants are ordered and I have hosta and peony bulbs as well as specially selected seeds ready to go!
  • New sewing projects are in the works as well!!  Having already created a pretty good work wardrobe of me-mades, I have happy plans for play clothes and sleep wear.  It is a real hole in my wardrobe currently, so I think it will be a useful, fun, stash busting project!
  • I finished a selection of Edith Wharton novellas and short stories.  How I'd never read Ethan Frome, I don't know...but, WOW!  What a twisted, touching, sad, love story!  I found Xingu to be such a modern woman's story - exposing women leading cliques, those following, and those who simultaneously give no shits while standing up for what's real!!  Excellent! It is so nice to be able to focus and read again!!!
  • Still working hard on building physical strength and endurance!  Running a mile or doing 2 on the elliptical most days along with core and weight training.  I am stronger despite continued pain to hips, knees and ankles.  I no longer lose huge handfuls of hair when I run my hands through it (wasn't that big a deal other than a mess...just keep'n it real), the weird brown crusty lesions to face and hands are gradually resolving, and I no longer have ooey gooey conjunctivitis!!  So, YAY!!!!  Neuropathies to fingers and feet are about the same ~ maaaaybe a little better?  I have developed problems with swelling to my hands, to the point it causes pain and even wakes me at night.  At first I thought, I had done something to them - hurt them with garden work, slept on them strangely.  Perfect patient blaming, right?  But, then it struck me (and B agrees) that while the pain and irritation at the Oxaliplatin infusion sites to both forearms is resolving, those veins are hardened and probably considerably, if not completely, occluded at this point, significantly decreasing my venous return in the area!  Ergo - pooling of fluid to my hands and fingers especially when at rest.  Nifty, huh?  Oh, well.  Hopefully this too shall pass!
  • Still working to help various melanoma peeps.  Still waiting for the day when there is no longer a need.  Still appreciating my dear ones.  Still in love with my best friend.
  • I leave you with this ~
                 "Love is not two people gazing at each other, but two people looking ahead together in the same direction."                                        ~ Antoine de Saint-Exupery

Live and love chaotically!! #RememberParkland, #MarchForOurLives, #NeverAgain, #NotOneMore, #WeStillCallBS ~ les

Thursday, February 14, 2019

Sew Chaotically! ~ Valentine's Day Top, M6886


Since the kids were small, I've liked the surprise of a spring leaning treat on Valentine's Day, often making a little something for them.  With Fred-o there were elastic pull-on shorts when he was small, which evolved to picking up a cute shirt or tee as he grew older.  With Rosie Roo, there were DRESSES!  Back then, MORE was MO BETTAH!!! 
As if the heart printed quilting cotton was not enough - there are ALSO heart shaped buttons, pink ribbons, pockets AND a sash!!!
This crazy little lady bug jumper was a real fav!
Rose buds figured largely in many items! I made her daddy a matching bow tie for this one!!!


And though her current aesthetic has changed a bit, when I saw this bright knit at Textile Fabric Store in Nashville, I knew it would be a great Valentine top for Roo!!!  I've used this versatile pattern many times ~ twice as a dress and here as a top!  It goes together perfectly.  Not too tight.  Not too loose.  With multiple neckline, length and sleeve options.

















A "teacher pose"!!!  (According to Roo!)
My sweet little Valentines have had all my heart since the minute I met them!  Thanks for so many years of smiles and joy.

Hmmmm.....  Maybe I need to make a new pink stripey shirt for Fred-o!!!
And because I am the most spoiled girl in the world....
Sweetness that made me laugh out loud!  Does B know me or what????
Wishing a sweet Valentine's Day to each of you!! ~ love, les

Wednesday, February 13, 2019

Better melanoma results with radiation BEFORE BRAFi (at least in this report)


What treatment to employ and the order in which to use them in melanoma care have long been discussed and examined, sometimes with horrible results.  Remember back in the day, when it was decreed that one had to take and FAIL ipi BEFORE being allowed to take anti-PD-1???  And then we learned that folks treated that way had a DECREASED response to anti-PD-1???!!!  Remember when we thought having radiation while on anti-PD-1 would cause untenable side effects?  But, instead we learned that radiation WITH anti-PD-1 provided better results than when either treatment was utilized alone??!!!  Progress, though ever so much slower than we want and need, continues to be made  regarding order of operation, thanks to amazing ratties and research.

Now, there's this:

Sequence-dependent cross-resistance of combined radiotherapy plus BRAFV600E inhibition in melanoma. Shannan, Matschke, Chauvistre, et al.  Eur J Cancer. 2019 Feb 2. 

Treatment of patients with metastatic melanoma is hampered by drug-resistance and often requires combination with radiotherapy as last-resort option. However, also after radiotherapy, clinical relapses are common.  Our preclinical models indicated a higher rate of tumour relapse when melanoma cells were first treated with BRAFV600E inhibition (BRAFi) followed by radiotherapy as compared to the reverse sequence. Accordingly, retrospective follow-up data from 65 stage-IV melanoma patients with irradiated melanoma brain metastases confirmed a shortened duration of local response of mitogen-activated protein kinase (MAPK)-inhibitor-pretreated compared with MAPK-inhibitor-naïve intracranial metastases. On the molecular level, we identified JARID1B/KDM5B as a cellular marker for cross-resistance  between BRAFi and radiotherapy. JARID1Bhigh cells appeared more frequently under upfront BRAFi as compared with upfront radiation. JARID1B favours cell survival by transcriptional regulation of genes controlling cell cycle, DNA repair and cell death.  The level of cross-resistance between combined MAPK inhibition and radiotherapy is dependent on the treatment sequence. JARID1B may represent a novel therapy-overarching resistance marker.

So...in this retrospective analysis of 65 Stage IV melanoma patients, it appears that those who opted for radiation before BRAFi had a longer duration of response.  Small numbers, but something to think about.

For what it's worth.  Hang tough, ratties.  - c

Sunday, February 10, 2019

Sew Chaotically! ~ Yep, another Morris Blazer...


... cause they're awesome!!!  I made this bright and beautiful Morris Blazer, from Grainline Studio, for Roo a couple of months ago.  But, now, there's this one!!!  It is made from a super soft, reversible, sweater-like knit from JoAnn's.  I decided to make the most of both sides of the fabric, using the striped side for the inner aspect of the collar and adding a contrasting cuff to the sleeves.  Given the nature of this fabric, I did face the collar and hem band with knit interfacing.  I made the size 8 with no other adjustments.  The grey/green olive color it looks so pretty with Roo's skin and eyes!






Such a cutie!!!
Love my girl!  (And a Morris Blazer!) Sew chaotically!! ~ les

Thursday, February 7, 2019

Sew Chaotically! ~ Toaster Sweater, Version 2


I made Version 1 of Sew House Seven's Toaster Sweater last year and have continued to love it this winter!!!  This year, I decided I needed to whip up Version 2!  It went together just as well as the first.  It is a super easy make and can go together very quickly.  I spent a little extra time on mine.  The lovely periwinkle knit I used was VERY "flimpy" and fine, so I applied knit stay tape to the neck line, cuffs and hem.  Beyond adding that, and a couple of inches to the length, size medium, I made no changes!!  I think it turned out pretty and fun!






B required one non-wiggly pic so you could see the shape!  (Such a profesh fashion photog!) 

In its more natural state - at least if I'm wearing it!!!
Wishing each of you a lovely day.  Sew chaotically! - les

Monday, February 4, 2019

T-VEC demonstrates ORR of more than 88% and CR of 61% for melanoma


I've been enamored of intralesionals/intratumoral therapies for melanoma for years, putting up my most recent post last month which included links to prior posts.  Now there is more good news....

High Response Rates for T-VEC in Early Metastatic Melanoma (Stage IIIB/C-IVM1a). Franke, Berger, Klop, et al.  Int J Cancer. 2019 Jan 29.

Talimogene laherparepvec (T-VEC) is a modified herpes simplex virus, type 1 (HSV-1), which can be administered intralesionally in patients with stage IIIB/C-IVM1a unresectable melanoma (EMA label). The phase 3 OPTiM registration study showed an overall response rate (ORR) of 26%. Since December 2016, 48 eligible patients started treatment at the Netherlands Cancer Institute. We included 26 patients in this study with a follow up time greater than/ = to 6 months, reporting Overall Response Rate (ORR), Disease Control Rate (DCR), Adverse Events (AE), prior treatment for melanoma and baseline characteristics, documented in a prospectively maintained database. In house developed treatment protocol consists of clinical evaluation, periodic PET-CT and histological biopsies for response evaluation. Median follow-up was 12.5 months. Of 26 patients, 16 (61.5%) had a Complete Response (CR) as their best response. Seven (26.9%) patients had a Partial Response (PR) as their best response, 1 (3.8%) patient Stable Disease (SD) and 2 (7.7%) patients Progressive Disease (PD). Best ORR was 88.5%. DCR was 92.3% . Grade 1-2 AE's occurred in all patients. Mostly, these consisted of fatigue, influenza-like symptoms and injection site erythema. All patients underwent prior treatment. Prior treatment did not influence response or toxicity of T-VEC. Best ORR for T-VEC monotherapy at our institute was 88.5% with 61.5% achieving a CR. This prospective study for T-VEC in early metastatic (stage IIIB/C-IVM1a) melanoma demonstrated superior results to the phase 3 OPTiM study and confirms the role of oncolytic immunotherapy for melanoma.
For a personal real time, real life report there is also this from dear Julie:  The development of a red-hot mess after T-VEC necessitating antibiotics and antivirals...but with continued hope for a great response!! 

Hang tough ratties!!  Fingers crossed for a rapid resolution of adverse effects and a complete response for Julie! ~ c

Saturday, February 2, 2019

A sewing, living, melanoma, adenocarcinoma mash up and up-date!!


I've been pondering a lot of disparate, complicated things lately!

  • Race relations.  Prejudice in its many horrible machinations.  
  • Melanoma odds.  
  • Does adjuvant CAPOX do anything good for ex-goblet cell adenocarcinoma of the appendix?  Is CAPOX following immunotherapy the perfect recipe for neuropathies and arthralgias that make you unable to sleep and most movements painful?  (FYI - it is!!!)  Will these lovely conditions resolve?  Or is this just the way things are now?  
  • The weird uncomfortable position of knowing I am LUCKY for same.  What do you reckon is going to kill me?  What am I to do with the rest of my life?  
  • Our eff'ed up political system.  As per a discussion with B just moments ago....noting that in other democracies across the globe, leaders are OBLIGATED to make sure all parties, whether a binary system or not, are incorporated into the ruling party.  Just saying, "Nanny, nanny poo poo.  We won!  You lost!!!" is insufficient at best.  Further, while leaders may be elected for a term of "x" duration, the possibility of a vote of "no confidence" holds them accountable and can remove them from their position if they do not enact policy and legislation that reflects the will of the people.
Reading "The Goldfinch" may well have worsened my current mood!  HA!!  That story has some seriously dark crapola in it!!!  Anyhow, probably best if I start with an update!!!

Overall, things continue to improve in regard to my health.  I am getting stronger.  I am running a mile up and down my hills or exercising on our elliptical most days along with core work.  I can do more than 60 sit-ups in a session.  I am consistently hitting 1 mile per 10 minutes on the elliptical even though I've bumped up the resistance and the time!  Pretty proud of that.  I have added a lot of strength training with 5 pound weights.  It has been weirdly wonderful NOT to experience shortness of breath and wheezing in this convalescence!  Given my life with asthma, recuperating after the removal of the right upper lobe of my lung due to melanoma, repeated pneumonitis after immunotherapy infusions ~ it catches me by surprise that I can complete my current efforts and still breathe!!!  The ugly brown scaly CAPOX induced skin lesions are improving/resolving.  However, the neuropathies to hands and feet are essentially unchanged and on some days are even worse rather than better.  My knees in particular (though hips, ankles, wrists and shoulders are affected) cause constant pain.  And before you yell, "STOP exercising, then!!!"  Exercise makes it no worse, no better.  I've tested that. In fact, going for a run or an elliptical workout tends to loosen things up in a good way.  I am back to my normal weight.  My abdomen (mostly) is not bloated to the point that I appear to be 6 months pregnant.  I am eating well with few limitations.  That said, a couple of weeks ago I had a revival of colitis and pain identical to the experiences I had while still taking CAPOX!!!  Three days of complete yuck and inability to do anything!  Crazy.  No identifiable cause.  Just was.  Thankfully, that resolved and gastronomically speaking, things are pretty good.  

Lack of sleep due to pain is a downer.  As is pondering whether you've 'done a body good' with the treatments one has selected, or merely 'done your body in'!!!!  So is the state of all too many things in our world today, from the state of the planet to the state of our politics.  Seeing the discord and animosity (by a few) in the sewing community, a group that I've so admired and who played a crucial, positive role in my ability to survive my 4 months of incarceration, has been difficult.  Don't get me wrong.  I value and applaud having hard conversations.  That's how we get through difficult shit and make things better!!  However, being ugly to fix ugly doesn't seem to be effective at best and is merely utilizing and embracing the very tactics and attitudes that are the problem in the first place at worst!  (You can see all my posts on this topic here, here, here, and here.)  I lost a dear friend - again.  Another has dropped off the grid.  I fear I know what that means.  I wonder what will be the cause of my demise.  I figure I have a few more options than most.  Wonder if I will develop more.  It is hard to feel LUCKY in my circumstances.  Yet, I KNOW I AM!!  Lucky to have been diagnosed with all my maladies as early as I was.  Lucky to have gained access to treatment.  Lucky to have survived my treatment as unscathed as I am.  Lucky to be able to run a mile.  Lucky to be here at all.

I will pick myself up out of my funk.  Things are not all doom and gloom.  I have the bestest, sweetest, loveliest man who will do anything...even things he would NEVER choose to do on his own....to make me smile.  I mean who does that????  B does.  That's who.  I have an amazing network of the craziest, dearest friends - near and far.  There are some writing projects on the horizon.  I have all sorts of gardening, making, and even a few trips, planned for the coming months.  A decadent and blessed way of living to say the least.  And in my ongoing search for growth and answers to all things, I have found a great deal of inspiration, not surprisingly, from many in the sewing community!!!

Today, I bring to you some wisdom and joy from Erica Bunker, a fellow Alabama girl from Birmingham!!!  Check out her blog in the link above or her IG feed @ericabunker.  She provides lots of sewing inspo and fabulous tutorials!  But, lately, her wisdom has been the part I've liked best.  To whit....
  • An unhealed person can find offense in pretty much anything someone does.  A healed person understands that the actions of  others has absolutely nothing to do with them.  Each day you get to decide which one you will be.
Yes!
  • The strongest actions for a woman is to love herself, be herself, and shine among those who never believed she could.
Excellent.  But I would say:  "...and shine among those who BELIEVED she could ~ in spite of those who believed she couldn't!"

And finally...
  • Easy to spot a yellow car when you are always thinking of a yellow car.  Easy to spot opportunity when you are always thinking of opportunity.  Easy to spot reasons to be mad when you are always thinking of being mad.  You become what you constantly think about.  Watch yourself.  If you seek positivity, you'll find it.  If you seek negativity, you'll find it.
The sun is shining.  The birds are singing.  My children are strong and healthy, out in the world giving it their best.  My friends have my back and then some.  B is about to dig a ditch!  Just for me!!  I am strong.  I am present in this beautiful, crazy place in time.  It is good.

B's cherry blossoms will be coming soon!!
Much love to each of you...in your world...whatever you find it to be.  May this moment shine for you.  ~ les