Wednesday, August 29, 2018

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

Monday, August 27, 2018

Sew (and live) Chaotically! - Danita, an Inari, and love


I believe in soul mates.  They are not always lovers.  They are not always blood relatives.  But they are real.  People who get you - from the start. Who have your best interest at heart.  Who share - the good, the bad, and the ugly.  Who listen to the same from you.  Who know you - warts and all. 

I have had the incredible blessing to have more than my fair share of these wonderful souls in my world.  And my dear Danita is certainly one.  We clicked from the moment we met.  We have cried together and laughed so hard that tears ran down!  She is a soul sister indeed.  When she admired my Inari Tee  dress, I wanted to make a special one for her!  So...I did!!!

The Inari I made for myself (link above) had a bit more structure.  But I thought this super soft brushed cotton woven from JoAnns would be perfect for D!!!
I think it works!!  Isn't she the cutest?????
And in case my happy place wasn't happy enough.....
....she and her talented husband made me this!!!!
Exactly.  Your spirit is forever in my heart, my dear sweet Danita.  Thanks for being you.  My life is ever so much better for having you in it.  Much love, c

Sunday, August 26, 2018

Live chaotically!!! - To my B


Only in my crazy, wonderful world with B does every bit of this make perfect sense!!!



Happy anniversary, baby!!!  30 years!  Not nearly enough.  Summer linen peeps toes!!!????  Still cracking me up.  My crazy boy.  My true love.  Because you got me.  Because you were the best.  Because you were beyond kind and true.  Because - you were you.  And, I was right.  I love you more.  ~ les

Friday, August 24, 2018

Immunotherapy works in the brain!!! Surprise, surprise, surprise! NOT!!!


How long have I been yelling about this????  Let's just say it's been a while!

Here is a post from 2014 (NOT my first one on the topic that really explains the whole deal - with pictures and all!!!!!  Anti-PD1 in melanoma: T-cells, the brain, and EVERYWHERE ELSE!!!!

Here are about a zillion more posts with articles documenting response in the brain when immunotherapy is used:  Immunotherapy and melanoma brain mets

In the process of utilizing immunotherapy to treat those poor ratties with brain mets, we also learned that when immunotherapy is combined WITH radiation, the response is even better.  Which brings us to today.

Here is a link to Combined Nivolumab and Ipilimumab in Melanoma Metastatic to the Brain. Tawbi, Forsyth, Algazi, Hamid, Hodi, et al. New England Journal of Medicine. August 23, 2018.  Which says in part:

METHODS  In this open-label, multicenter, phase 2 study, patients with metastatic melanoma and at least one measurable, nonirradiated brain metastasis (tumor diameter, 0.5 to 3 cm) and no neurologic symptoms received nivolumab (1 mg per kilogram of body weight) plus ipilimumab (3 mg per kilogram) every 3 weeks for up to four doses, followed by nivolumab (3 mg per kilogram) every 2 weeks until progression or unacceptable toxic effects. The primary end point was the rate of intracranial clinical benefit, defined as the percentage of patients who had stable disease for at least 6 months, complete response, or partial response.  

RESULTS  Among 94 patients with a median follow-up of 14.0 months, the rate of intracranial clinical benefit was 57% (47 to 68); the rate of complete response was 26%, the rate of partial response was 30%, and the rate of stable disease for at least 6 months was 2%. The rate of extracranial clinical benefit was 56%. Treatment-related grade 3 or 4 adverse events were reported in 55% of patients, including events involving the central nervous system in 7%. One patient died from immune-related myocarditis. The safety profile of the regimen was similar to that reported in patients with melanoma who do not have brain metastases.  

CONCLUSIONS Nivolumab combined with ipilimumab had clinically meaningful intracranial efficacy, concordant with extracranial activity, in patients with melanoma who had untreated brain metastases. 

Now.  The sad thing is, immunotherapy, ipi/nivo in this case, does not work on anybody, anywhere, 100% of the time.  As you can see from the data above, outside the brain, 56% of these 94 patients gained clinical benefit.  In the brain, clinical benefit was attained in 57% of these patients.  Another sad point is that side effects are nothing to sneeze at, with grade 3/4 events reported in 55% of the patients and one passing due to inflammation of the heart.  Another very important point here, is that while the response numbers in the brain are basically the same as in the body, prior research demonstrates that when immunotherapy is combined with point specific radiation, like gamma knife or SRS, the response is better and more durable than with either treatment alone and the poor ratties in this study were required to have "at least one measurable, nonirradiated brain met".

And....we know this is real cause...oh, yeah!...We've gone mainstream!!!  Here's a link to a report on the findings in The New York Times, where Tawbi cedes the points I mentioned above and confirms that while these responses to immunotherapy alone were good, radiation is still a critical treatment component for most:  Immunotherapy Drugs Slow Skin Cancer That Has Spread to the Brain

("Skin Cancer"!!!?????  Really Denise Grady?  Seriously?  That is the description of MELANOMA you use and your editors approved to headline this story??????????????????)

Well, despite the ubiquitous "skin cancer" line, we've come a long way baby!!!!  Immeasurable thanks to all the ratties who have paved the way.  NOW!!  Let's stop pondering whether immunotherapy works in the brain!  Let's lose the old notion of "it can't cross the blood brain barrier" BS that one self-proclaimed expert on one particular melanoma forum has erroneously claimed - for YEARS!!!  Let's push all docs to realize that immunotherapy is enhanced when combined with radiation with no deleterious effects (at least no greater than the crappy crap that can go with melanoma and immunotherapy in the first place!!!) and move on to finding treatment solutions that work for greater than 50 odd percent of my melanoma peeps!!!!  Okay.  I'll breathe now.  Thanks J and F.  Thanks ratties.  Much love, c

Wednesday, August 22, 2018

Elderly in need of immunotherapy? Can they tolerate it? Can they gain a response? YES, they can!!!


I've noted that elderly patients can not only tolerate but respond to immunotherapy as well as the rest of us before:  Elderly melanoma patients and immunotherapy

Now, there's this:

Older melanoma patients aged 75 and above retain responsiveness to anti-PD1 therapy: results of a retrospective single-institution cohort study.  Ibrahim, MateusBaz, Robert. Cancer Immunol Immunother. 2018 Jul 28.  

The utility of immunotherapy in elderly melanoma patients is debated. We aimed in this study to evaluate the efficacy and tolerability of immunotherapy among elderly patients.

This is a retrospective single-institution cohort study. Patients aged 75 years and above who had been treated with nivolumab, pembrolizumab or ipilimumab for advanced or metastatic melanoma, were included. Patients and disease characteristics were collected using electronic medical records. Objective response was determined according to the immune-related response criteria. Drug-related toxicities (DRT) were graded according to the CTCAE v4.03.

99 patients were included with a mean age of 80 years. One patient received nivolumab and ipilimumab combination, but died because of drug-related diverticulitis. Median PFS on pembrolizumab, nivolumab or ipilimumab were equal to 11.9, 1.4, and 2.8 months, respectively, while objective response rates were equal to 51.6, 12.5, and 17.3%, respectively. Median OS was not reached in patients who received only pembrolizumab, 8.7 months in the ipilimumab only group, and 23 months in patients receiving several immune therapies sequentially. Pembrolizumab, nivolumab, and ipilimumab grade 3-4 DRT rates were equal to 24.2, 62.5, and 32.7% respectively, while discontinuation rates were equal to 43.5, 62.5, and 28.8%, respectively.

Our study suggests that immunotherapy is effective and well tolerated in the elderly. The PFS on pembrolizumab was greater than expected, a finding that needs to be investigated further.

Ok.  Don't know why they are confused by their pembro results...they seem in keeping with what we know already and this is a small sample.  But, so be it.  The elderly peeps tolerated and responded to immunotherapy as well as ratties in other age groups! 

There is also this:

The efficacy and toxicity of immune checkpoint inhibitors in a real-world older patient population. Sattar, Kartolo, Hopman, et al. J Geriatr Oncol. 2018 Aug 10.

Immunotherapy has emerged as an effective treatment option for the management of advanced cancers. The effects of these immune checkpoint inhibitors in the older patient population has not been adequately assessed.  To understand the impact of aging on CTLA-4 and PDL-1 inhibitors efficacy and immune-related adverse events (irAE) in the context of real-world management of advanced solid cancers.

This retrospective study involved all non-study patients with histologically-confirmed metastatic or inoperable solid cancers receiving immunotherapy at Kingston Health Sciences Centre. We defined 'older patient' as age greater than/= to 75. All statistical analyses were conducted under SPSS IBM for Windows version 24.0. Study outcomes included immunotherapy treatment response, survival, as well as number, type, and severity of irAEs.

Our study (N = 78) had 29 (37%) patients age less than 65, 26 (33%) patients age 65-74, and 23 (30%) patients age greater than/= than 75. Melanoma, non-small cell lung cancer, and renal cell carcinoma accounted for 70%, 22%, and 8% of the study population, respectively. Distributions of ipilimumab (32%), nivolumab (33%), and pembrolizumab (35%) were similar in the study. The response rates were 28%, 27%, and 39% in the age less than 65, age 64-74, age greater than/= to 75 groups, respectively. Kaplan-Meier curve showed a median survival of 28 months (12.28-43.9) and 17 months (0-36.9) in the age less than 65 and age 64-74 groups, respectively; the estimated survival probability did not reach 50% in the age greater than/= to 75 group. There were no statistically significant differences found in terms of irAEs, multiple irAEs, severity of grade 3 or higher, types of irAEs, and irAEs resolution status when comparing between different age groups.  

Our results suggest that patients age greater than/= to 75 are able to gain as much benefit from immunotherapy as younger patients, without excess toxicity. Our findings suggest that single agent immunotherapy is generally well-tolerated across different age groups with no significant difference in the type, frequency or severity of irAEs. Future studies evaluating aging and combination immunotherapy are warranted.

Again, elderly peeps gained responses and dealt with side effects to immunotherapy in a fashion similar to previously studied populations.

Ratties are ratties, no matter their age!!!  Good to know if you or your loved one "of a certain age" are in need! - c

Monday, August 20, 2018

Sew Chaotically! - Paris top by Orageuse and a-line skirt combo! It's awesome!!


Sew!  This post is long in coming in all sorts of ways!!!  I got this border, eyelet print cotton from Mood over a year ago, thinking I would make some sort of boho top using the scalloped edge as the hem.  When it arrived it was lovely, but there was much MORE to the border than anticipated, so it sat.  Over the winter, I fell in love with everything Orageuse and B was sweet enough to purchase, print and put together a bunch of them!!!  They have been AWESOME!!!  Here is the Berlin skirt!  Here is the lovely Bristol dress!  And I have their Bruges cut out!!!!  When spring arrived I was set on making the Paris top!  So.....I did!
I considered so many things!  The aforementioned top.  A dress.  Then it hit me!  The "top" of the fabric as the Paris top and the bottom - a simple skirt.  Perfect together!  Perfect as separates!!  I know this goes against the Oona Balloona grain, and I love her for it.  But, it works better for my life and style!  Cheers, to us both!!!
Thus far...the size 40 has been working perfectly! I had to make this top a little shorter than indicated due to fabric limitations. All patterns have gone together well, explain any adjustments that you may need to make, and have interesting details I love.  Although on this one, the zipper is not needed for wearability (so I left it out) though I may well use on another version to up the cuteness quotient!
I think this simple top really does exemplify "Parisian chic"!
The neckline is so pretty, and while facings can be the bane of the home sewist's existence as a red light that shouts "Holly Hobby Homemade"!!!!  These lay very nicely and add to the structure of the neckline, rather than jack it up!!!

I LOVE this little shoulder detail!
For the skirt I used this basic pattern, adding on seam side slits on both sides.  Easy peasy!
I've worn this to work several times and it is a very "workable" outfit that got lots of compliments with each wear!
Poor B was tasked with snagging a few pics before we were off to errands.  Fashion poses in the garden!  Bahahaha!!!

Simple.  Pretty.  Useful.  Mix and match!  I like it!  Sew chaotically!! - les

Sunday, August 19, 2018

SLNB and CLND....in melanoma patients!! Again!


The topics of sentinel lymph node biopsy (SLNB) and complete lymph node dissection (CLND) have been more than covered here!!  But, melanoma is a scary world to say the least, and folks are most frightened right at the time they are having to make these decisions! So, there was this:

SLN biopsy. Delay of 40 days = WHAT???? (Plus some general guidelines)

And this:

CLND - Complete lymph node dissection in melanoma - the whole shmegegge!!!!!!!!!!!

Now there's this:

Risk stratification of sentinel node-positive melanoma patients defines surgical management and adjuvant therapy treatment considerations. Verver, van Klaveren, van Akkooi, et al. Eur J Cancer. 2018 Apr 13.

In light of the evolving landscape of adjuvant therapy in melanoma and the recently confirmed absent survival benefit of completion lymph node dissection (CLND), it becomes important to explore possible consequences of omitting CLND, and whether it is possible to adequately stratify positive sentinel node (SN) patients solely based on information retrieved from the melanoma up to the sentinel lymph node biopsy (SLNB).

A retrospective cohort from nine European Organization for Research and Treatment of Cancer Melanoma Group centres was used. Patients were staged based on SLNB and CLND result according to the American Joint Committee on Cancer (AJCC) criteria and stratified by ulceration and SN tumour burden. These were incorporated in Cox regression models. Predictive ability was assessed using Harrell's concordance index (c-index) and the Akaike information criterion (AIC).


In total, 1015 patients were eligible. CLND led to upstaging in N-category in 19% and in AJCC stage in 5-6%. The model incorporating only ulceration and SN tumour burden performed equally well as the model incorporating substages after CLND. The model incorporating substages based on SLNB had the lowest predictive ability. Stratifying by ulceration and SN tumour burden resulted in four positive SN groups from which low-, intermediate- and high-risk prognostic classes could be derived.

Adequate stratification of positive SN patients was possible based on ulceration and SN tumour burden category. The identification of low-, intermediate- and high-risk patients could guide adjuvant therapy in clinical practice. Omitting CLND seems to have little consequences.  

This report simply reiterates what prior studies have shown.  SLNB is important for staging.  And looking at what the sentinel node shows as far as tumor burden, esp when you consider whether or not the initial lesion was ulcerated,  can be very helpful in evaluating risk and decision making regarding adjuvant treatment.  CLND did not really impact results.

Good luck, ratties!  You can do this! - c