Thursday, May 2, 2019

Sew Chaotically and Melanoma Awareness! ~ #MeMadeRobes - Part 1

My recent incarceration destroyed and tainted my existing robes, gowns, and 'lounge wear'.  I rehashed some of that when sharing the creation of this little gown!  This week I've worked to replace a couple of robes.  Here's the first ~
I made this robe with a woven cotton remnant purchased for $15.00 from Gail K Fabrics in Atlanta.  I used Purl Soho's free pattern, used previously and reported on in this post recounting a robe stitching nightmare:  Sew Chaotically! - The good, the bad, and the ugly!!! The ROBE to hell is paved with good intentions!!!.  Be sure to look at the robe at the end of the post!!!  BAHAHA!!!  Remaking it did remind me of a complaint other sewists had about it.  The arm-pit area is rather restricted.  I am not very big there, so it worked out.  The Purl Soho site does provide an additional pattern piece, supplied after many sewists mentioned this problem, that allows you to add a gusset to that area if you feel like you need it.  You can probably just create a bit of a "wing" in that area of the "sleeve", which is nothing more than a rectangle in the pattern, that would successfully address the issue as well.  At any rate, forewarned is forearmed!  (I crack myself up!!!)  I am very happy with this little light weight robe.  I think it will serve me quite well through the summer.  Stay tuned for a Me-Made-May robe of a different sort tomorrow!!!!  (NOTE:  Just checked the Purl Soho site and found that the pattern is no longer free!!!  As such, I'm not sure I would purchase it!  I mean, there are better patterns with fewer issues out there!  Sorry, Purl Soho.  Gotta keep it real!!  The "pattern" is literally a series of rectangles...that's it!  As a freebie - it's workable.  For a price - there are patterns that go together much more nicely.  Tomorrow's example is just one!)
And in keeping with May's other important topic ~ 
We've made great strides in the treatment of melanoma. The existence of effective targeted therapy and immunotherapy has saved thousands of lives, including mine - as a rattie in a Phase 1 immunotherapy trial that administered nivolumab (Opdivo) to me and my fellow ratties from 2010 - 2013. That said, targeted therapy is effective for BRAF positive melanoma peeps. That's only about half of us and while some are maintained on those drugs for years, in most, melanoma learns how to work around that treatment in about 9 months.  Immunotherapy only works in about 40% of patients when anti-PD-1 products (Opdivo or Keytruda) are used as single agents and only in about 50% when patients are given the ipi/nivo combo.  Further, though these meds are not nearly as nasty as some traditional chemotherapeutic agents - generally speaking - they are not without miserable side effects, at best, and life threatening ones, at worst.  However, the combined hype from slick ads, a lack of direct information from providers and possibly wishful blinders on the part of patients may lead to confusion and unfortunate surprises about what these drugs will and will not do.  Today, there's this:

Balancing the Hype with Reality: What Do Patients with Advanced Melanoma Consider When Making the Decision to Have Immunotherapy?  Wong, Billett, and Milne.  Oncologist. 2019 Apr 23. 

Immunotherapy has resulted in unprecedented improvements in survival and maintained quality of life for many patients with advanced melanoma. However, durable responses are observed in only a minority of patients, and severe treatment side effects are experienced by 5%-30%. There are no reliable tests that can differentiate between patients who are likely to respond to immunotherapy and those who will not. Hence, new challenges have arisen as clinicians try to facilitate patients in their decision-making regarding immunotherapy. Furthermore, little is known about the real-world patients' experience and understanding of immunotherapy outside the clinical trial setting. Here, we explore the perspectives of patients undergoing immunotherapy for melanoma and focus on factors that influenced their treatment decision-making.

Twenty-three in-depth semistructured interviews were conducted with patients receiving pembrolizumab for stage IV melanoma at an Australian public cancer hospital. Patients were recruited at a range of time points after commencing therapy, and their experience of treatment was explored. Interviews were audio recorded, transcribed verbatim, coded, and analyzed thematically.

Immunotherapy is viewed as a symbol of hope, with high-profile anecdotes reinforcing this perception. Only a minority of patients expressed a good understanding of the likely efficacy and potential treatment side effects. Patients are reliant on their clinicians' recommendation regarding immunotherapy treatment decisions.

Novel treatments such as immunotherapy provide significant hope for patients. This may influence their preference for immunotherapy over and above the usual considerations of the trade-off between efficacy and toxicity. Careful counsel and individualized patient resources may further facilitate treatment decision-making.

This study highlighted some of the misconceptions held by patients that need to be addressed when discussing the possibility of receiving treatment with immunotherapy for advanced melanoma. Patients placed a lot of importance on high-profile anecdotes rather than truly understanding likely outcomes of treatment based on personal circumstances. The majority of patients had a poor understanding of the potential side effects and long-term implications of treatment with immunotherapy. Careful counsel is required in order to facilitate informed decision-making about treatment and to ensure possible side effects are known and appreciated. Further research is needed to develop tools to aid decision-making in everyday clinical practice.

Of course patients are relegated to learning about treatment options and what side effects and limitations those treatments may entail from their providers!!!  Most melanoma patients are NOT medical providers themselves!!!  Sadly, not all medical providers do their job as they should.  And...not all melanoma patients listen to things they don't want to hear.  I also find it horrifying that "little is known about the real-world patients' experience and understanding of immunotherapy outside the clinical trial setting." Why the hell not????  Just ask!!!!  So, it's complicated.  Perhaps this is why I continue to get emails multiple times each week from folks across the globe asking questions about melanoma and its treatment.  Why melanoma forums like MPIP: The Melanoma Patient Information Page through the Melanoma Research Foundation are so important.  Why I keep writing about melanoma on these pages.  But!  Melanoma patients shouldn't have to acquire needed information this way!!!

MAY your day be filled with truth, effective melanoma treatment and prevention, as well as some wonderful ME-MADE-MAKES!!!! - c

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