Sew Chaotically! - Colette's Redemption in the Sorbetto Top!

You may remember that I had fun making a few spring tops for, Roo (To see the pic, click here!) After paying full price for the Colette Aster (The Aster Disaster!!!) pattern....I got the Sorbetto pattern for free.  And you can too!! Just check out this link:  Colette Patterns - Sorbetto Tank Top

Bentie was a sweetie, printing and putting the pattern together for me!!

I made this one first to test the size and such!   It was made with scraps of material used long ago in a simple play dress I wore chasing the kids around when they were small.  Given the material, it is a little hard to see the front center pleat.  My only pattern change for all the tops was to raise the neckline in the back. When worn with a pink sweater as my Valentine's Day attire, it got lots of compliments from my peeps!

I wanted to use this bit of material for Roo, since I had made her shorts and a cute sundress with it when she was little and it was a favorite!  The kind that was put on as soon as it was out of the wash!!  Given the limited yardage that remained, I had to omit the front pleat.  But this pattern is so versatile...you can do that!!!

Now, how cute is that???

I purchased this crazy print with Rose in mind from Hancock's (back when that store existed)!  And it seemed perfect for a little Sorbetto!!  

This top begs for cute variations.  I kept the bias tape finish, sight unseen in my version.  In her butterfly one, I let it shine.   Here, I made it as funky as possible, not only exposing it, but highlighting it, with contrasting thread.

Finally,  I made myself this one out of scraps from a dress I had made, since it matched this cute skirt Ruthie gave me for Christmas soooo perfectly!  Already wore it to work with a little black jacket, but it will be great for summer on its own.

Had to piece the back, given my limited yardage...but you can do that with this pattern!!!  No problem!!

Colette certainly redeemed itself here.  Free and FABULOUS!! I can see myself making many more of these little tops.  Eyelet with a scalloped hem.  Another out of a silky, flowing fabric. Linen....

#colettesorbetto    Sew Chaotically!!! - love, c

What to do in melanoma after anti-PD1 fails or upon regression after a response?

In melanoma world we are lucky to have anti-PD-1 and its 40% response rate.  However, as more of us have taken it, and failed...or even responded...but progressed later....the pressing question becomes...   Now what??????

Here are some articles that attempt to answer...

There was this (with a couple of links within):  ASCO 2016 - Other therapies after failing Pembro...and...trial with OX40 - alone and with Pembro...still enrolling...

And this:  Response to ipi or ipi/nivo after failing anti-PD1 as single agent in Stage IV melanoma

Now there is this case study...

Reinduction of PD1-inhibitor therapy: first experience in eight patients with metastatic melanoma. Blasig, Bender, Hassel, et al. Melanoma Res. 2017 Mar 2.

Significant progress has been made in the treatment of metastatic melanoma during the last years. Approval of immune-checkpoint inhibitors and targeted therapies has been achieved recently. The sequencing of these therapies is an important issue. Here, we report our experience with the treatment and retreatment with PD1-inhibitors (PD1i) in eight patients. The patients (two female and seven male with a median age of 70 years, all melanoma stage IV, M1c) underwent a first treatment period with PD1i for a median of 5.5 months. Three (37.5%) patients had a stable disease as best response, two (25%) showed progression, two (25%) showed partial response, and one (12.5%) achieved complete remission. PD1i was discontinued due to disease progression in seven patients and due to side effects (pancreatitis) in one patient. Patients were subsequently treated with ipilimumab (n=2), or chemotherapy (n=4), or no other medical treatment (n=2). All eight patients were subsequently retreated with PD1i for a median of 2.5 months. One (12.5%) developed a partial response, whereas in three patients (37.5%) the disease was stabilized. PD1i have shown a high and durable response rate in the first-line treatment of metastatic melanoma. Our study suggests PD1i retreatment as a reasonable option for selected patients. Further investigations are needed to verify the value of PD1i re-exposure and to identify subgroups of patients who can benefit.

Well, that's something.  But, too many of us need more!!!  Hang in there ratties!! - c

Super Cool? Or kinda sad?????

After a busy day at work and answering a couple of emails from some of my melanoma peeps, I opened another email to find the link below:

Top 70 Melanoma Blogs For People Living With Melanoma Disease

As determined by Feedspot.com, with this caption:

Top 70 Melanoma Blogs Winners

CONGRATULATIONS to every blogger that has made to Top Melanoma blogs list! This is the most comprehensive list of best Melanoma blogs on the internet and I’m honoured to have you as part of this! I personally give you a high-five and want to thank you for your contribution to this world.

So, yeah.  I'm number 22.  Which does make me kinda proud.  (Even though I can't help but notice the typo/poorly written first sentence in their blurb!!)  But, also a bit sad to realize that the folks battling this disease need this much advocacy...knowing that there are many more than these 70 blogs out there! On the other, hand, with all this cheering and yelling and participation....surely, together, ratties and researchers alike, will make the world a better place for those dealing with melanoma...until no one need talk, nor write, nor deal with melanoma, ever, ever never!!!! Amen.

But, if you are in need of answers, help, or camaraderie ~ take a look at the list and check out some good peeps with lots of info that you might find helpful to you and yours.  It takes a village.  love, c

Patients with preexisting immune disease, melanoma, and treatment with Anti-PD-1? Yes, this can be done. Yes, autoimmune flares should be treated with immunosuppressive therapy while on immunotherapy. And YES!!!! These patients can still attain a response!

Back when the world was young (2010 or so) and ipi (in other words, immunotherapy period) was finally producing positive responses for folks with melanoma, we simultaneously learned of the negative effects that could be wrought on the poor patient's immune system and really feared what could possibly happen if you were treated with immunotherapy when you KNEW that you already had an existing autoimmune disease process like asthma, colitis, or arthritis.  The solution by pharma and researchers? Exclusion from treatment!!!  By 2014, with this still unsolved conundrum hanging in the air, we certainly didn't know what to do with folks who developed immune related side effects to ipi, but still needed treatment for melanoma.  Could they be treated with the two newer immunotherapy drugs, anti-PD-1 products Nivo (Opdivo) or Pembro (Keytruda)?  No!  Exclusion from treatment remained the norm...as you can see in this post!!  (Yes, children.  Folks talked pretty funny back then, calling Keytruda, first MK-3475, then Lambrolizumab, then Pembrolizumab! Crazy things happen when the world is new!!)

Anyhow - here's the link:

Program for MK-3475 in Participants With Metastatic Melanoma Who Have Failed Standard of Care Therapy Including Ipilimumab (MK-3475-030)  which says in part, with my response:
Exclusions include - "history of life-threatening or severe immune-related adverse event" on prior immunotherapy.   Who decides?  Is an admission for colitis on ipi, though now recovered, considered a "severe immune-related adverse event"?  Is ipi induced hypothyroidism?

As things moved along...there was this:  April 2016: Anti-PD1 success in melanoma despite prexisting autoimmune disease, a case report

And this from ASCO (See the first abstract):  ASCO 2016 - Three anti-PD-1 reports

Now, there's this:

Programmed cell death protein-1 (PD-1) inhibitor therapy in patients with advanced melanoma and preexisting autoimmunity or ipilimumab-triggered autoimmunity. Gutzmer, Koop, Meier, et al. Eur J Cancer. 2017 Feb 16.

Programmed cell death protein 1 (PD-1) inhibitors are a common treatment strategy for metastatic melanoma and other tumour entities. Clinical trials usually exclude patients with preexisting autoimmune diseases, thus experience with PD-1 inhibitor (PD-1i) in this patient population is limited.

Metastatic melanoma patients with preexisting autoimmune disorders or previous ipilimumab-triggered immune-related adverse events (irAE) undergoing treatment with PD-1i from seven German skin cancer centres were evaluated retrospectively with regard to flare of the preexisting autoimmunity and development of new, not preexisting irAE as well as response to PD-1i therapy.

In total, 41 patients had either preexisting autoimmunity (n=19, group A, including two patients with additional ipilimumab-triggered autoimmune colitis) or ipilimumab-triggered irAE (n=22, group B). At PD-1i therapy initiation, six patients in group A and two patients in group B required immunosuppressive therapy. In group A, a flare of preexisting autoimmune disorders was seen in 42% of patients, new irAE in 16%. In group B, 4.5% of patients showed a flare of ipilimumab-triggered irAE and 23% new irAE. All flares of preexisting autoimmune disorders or irAE were managed by immunosuppressive and/or symptomatic therapy and did not require termination of PD-1i therapy. tumour responses (32% in group A and 45% in group B) were unrelated to occurrence of autoimmunity.

While preexisting autoimmunity commonly showed a flare during PD-1i therapy, a flare of ipilimumab-triggered irAE was rare. Response rates were above 30% and unrelated to irAE. PD-1i therapy can be considered in patients with autoimmune disorders depending on severity and activity of autoimmunity.

So....while caution and careful monitoring is certainly warranted...these peeps with an inherent pre-existing autoimmune process or one gained from having taken ipi....were successfully managed with "immunosuppressive therapy", "did not require termination of anti-PD-1 therapy", AND gained responses at a rate of 32-45%!!!!!!!!!!!!!!

ONE MORE TIME! Folks with immune disease took anti-PD-1, took prednisone or other immunosuppressive treatment to manage flares, did NOT have to stop anti-PD-1 therapy, and many DID gain a response!  

Could all you oncologists out there read and repeat??  Folks with auto-immune conditions CAN take immunotherapy with careful monitoring. Auto-immune flares SHOULD be treated with immunosuppressive therapy while on immunotherapy.  AND these patients can STILL.....GAIN A RESPONSE!  

And in case that still isn't clear enough...  What happens to folks with recurrent Stage IV melanoma who aren't effectively treated????  There ain't no Stage V people!

Okay, I'll quit yelling.  For now. - c

Happy New Year!! It's March Forth!!!

I'm weird.  I know it. But, I make complete and total sense...to me!!! My favorite day is here. MARCH FORTH!!  I am so incredibly blessed to be here to celebrate it....again.
Here's a review:

2011: 3/4/11 - March Forth!!!!

2012: anti PD1 update from Moffitt

2013: March Forth...again!!!!!

2014: My favorite day ~ March Forth...with a special pic/vid for J& F!!!!

2015: Long term melanoma survivors....MARCH FORTH!!!!!

2016: Endobronchial Melanoma "Little is known...." Hear ye, hear ye....MARCH FORTH!!!!!

Spring always seems the best time to celebrate and glory in the New Year. And while I have recently lost dear melanoma peeps, felt inadequate to remedy the hurt and pain of too many of my little charges at work, looked around and had the sinking feeling that the world and its leaders have gone completely mad - the beauty of nature, and love of family and friends surrounds me still.

In appreciation of all the gifts I have been given, I send warm sunshine, delicate blooms, and the intrepid spirit that Mother Nature gives and instills in all her living things...to each of you.
March Forth!  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  

SRS with any systemic therapy helps response in melanoma...but anti-PD-1 WITH SRS = best OS in brain mets

I have been yelling for the longest....Radiation WITH systemic treatment is an incredibly beneficial combo for melanoma ANYWHERE, but especially in the brain!!!  This link:  Radiation and Melanoma  will take you to about 9 million research reports!!!  Now there's a breakdown of how folks SURVIVE melanoma brain mets when radiation is combined with 3 different therapies...ipi, BRAF/MEK, and anti-PD-1....

Survival of patients with melanoma brain metastasis treated with stereotactic radiosurgery and active systemic drug therapies. Choong, Lo, Drummond, et al. Eur J Cancer. 2017 Feb 22.

With new systemic therapies demonstrating activity in melanoma brain metastasis, most of the previously reported stereotactic radiosurgery (SRS) data are superseded. In this study, we report the outcomes (overall survival [OS] and brain control [BC]) and identify factors that associate with such outcomes in the era of modern systemic therapy.

A total of 108 patients treated with SRS from 2010 to 2015 were included. Systemic treatment use within 6 weeks of SRS was noted. OS was defined as time from SRS to death or last follow-up...[statistical] analyses were performed on clinico-pathological prognostic features associated with OS and BC.

The median age was 64.3 years, and the median follow-up was 8.6 months. Seventy-nine (73.1%) patients received systemic treatment. The median OS were as follows: anti-CTLA4 - 7.5 months, anti-PD1 - 20.4 months and BRAF inhibitor (BRAFi) ± MEK inhibitor (MEKi) - 17.8 months. Median BC was as follows: anti-CTLA4 - 7.5 months, anti-PD1 - 12.7 months and BRAFi ± MEKi - 12.7 months. In multivariate analysis, age and type of systemic therapy were strongly associated with OS. Age, Eastern Cooperative Oncology Group performance status, Graded Prognostic Assessment (GPA) score, and presence of symptoms were associated with BC.  

Favourable outcomes are seen in patients treated with SRS and with the best survival seen in patients treated with anti-PD1. Known independent prognostic factors for survival such as age and performance status and GPA score remain relevant in this setting.

To reinterate:  Ipi with SRS = 7.5 month OS.  BRAF/MEK with SRS = 17.8 months OS.  Anti-PD-1 with SRS = 20.4 month OS.  I would assume that the ipi/nivo combo would provide an even longer OS when combined with SRS....though that treatment was not addressed in this study.  Wishing you well. - c