Sunday, January 15, 2017

Melanoma Bucket List?????


A question of bucket lists.... Do you have one?  What does it contain?....was recently posed on one of the melanoma forums I participate in.  I told myself... "I ain't got time for dat!" as I moved on, replying where I thought I might do some good.  But....

...the question kept coming back to me.  Most responses were along the lines of enjoying each day, appreciating their friends and loved ones....but there were a few things like a long motor bike ride, etc...that would be fun to fit in as well.  Nobody really wanted to climb Mt Everest.  Maybe having melanoma makes you too tired...or gives you good sense!  A dear one of mine mentioned that she had had a busy and productive life that included travel, learning many languages, work toward accomplishment and now, she was sort of relieved to be done with that and just wanted to enjoy the simple things...concluding: "I thought, what use is all the knowledge?  It all dies with you.  I guess when it comes to that stage you have to be happy with what you have aspired to and be ready to be at peace that the world will keep turning and that's as it should be." 

That part...kept haunting me.  It's not that I disagree with it.  If we are wise, we all accept our minute part in a huge world, making no more or less of it than it is.  Very Max Erhmann's  Desiderata and all...

You are a child of the universe,
no less than the tress and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

But the niggling continued.  I remembered, just after advancing to Stage IV, post lung removal and SRS to my brain, finding it very hard to find a reason to finish a book on Thomas Cromwell (still not sure that there IS really any definitive reason to do that!!!).....and I wrote this:

June 2, 2010  What to do....

Saw my pulmonologist today (Have now officially seen all docs in follow-up!). He thought I sounded great. Cough is getting better. Will have repeat PFT's at the end of this month with ABG's. Really tired of being poked but - OK. Doesn't need to see me again until Dec unless there are problems. The donkey {aka Bentie on edge} wigged him out a bit. When asked if there was anything concerning us, Brent unleashed with, "Yeah, I don't want to wait for the other shoe to drop before she has any other treatment." This momentarily unnerved the normally reserved yet cheerful Indian mystique my pulmonologist is cloaked in, but he's known Brent for a long time and soon realized this was just anxiety not a real desire for additional treatment at this time. {Well, there IS real desire for melanoma treatment at this time...but there isn't any...none at least that my pulmonologist can provide....so...} Tried to get my last labs from Lab Corp, may they rot, but, "No. We don't give results to patients." Let's see. They took my blood. Made me sign on the dotted line that they could bill me, my insurance, took a credit card....you get the picture, but, "No, they couldn't give me the results" of the labs I had last week that took them two sticks to draw.

At any rate, what does one do with time off and cancer?

Well..... At first, reading was not an option. I mean, who cares about finishing a book about Thomas Cromwell if you might be dead in a couple of weeks. But, you live, so then what? I mean we all enter the dead zone at some point. It is something I've thought about...hard...for the third time.  And, each time, I ended up with the same answer. I finished the book. Have read three more since. I'm working hard at getting physically stronger. Which, by the way, is getting better slowly. On Sun and Mon, I ran {aka - jogged slowly and laboriously} on my regular 2 mile route except for walking up my big hill. Which to those of you who don't know....it IS REALLY big!!! Today, I did some house cleaning and yard stuff and decided that was enough. Other days I've been doing my 15 min elliptical routine.

So...after reading and exercise, of course I spend time with my man and my critters. Fred and Rose have held my heart in there sticky little hands for 20/18 years now. And Brent, happened to tell me today, that he has been looking (leering) at my legs for almost 27. They see the "colors in me, like no one else" and I in them. Although, they are all TRULY wonderful. So, it is a real gift to spend extra time with each of them.

After that, I have crocheted three afghans (close your eyes, Ruthie!!). Worked on cooking some special meals. Caught up reading all my medical journals. Plan to do some study of Spanish and pediatrics. I am, at least, really grateful that I am not having to do 2 semesters of a master's PNP program in one in the upcoming months!!!

So....I made this choice a couple times before...move forward...even if it seems crazy...and people certainly look at me as though I'm crazy. But, hey!  It bought me 7 years. We'll see what happens this time...

I gained entry into my Nivo/Opdivo trial in December of that year.  I guess over the past 6 1/2 years - (Just noticed - on writing the post above, I was almost the same interval past my initial melanoma diagnosis!) getting through a Phase 1 trial, years of working as a PNP, years of being allowed the incredible opportunity to see my children grow into amazing adults....my view hasn't changed much. I think afghans are good.  Special meals are fun.  Exercise is still important and houses and yards still require care.

I think my dear friend and Max Ehrmann are both right.  We are foolish if we think we are essential to the world going round.  I think there may well be an appropriate time to be in pursuit of many things and a time to slow down.  But!  I do NOT think that all our efforts, education attained, skills developed....die with us.  IF!!!!!  (No greater word by tongue or pen!)  IF!!!!! - we pass them on.  I crochet because my Granny taught me how.  Though she passed when I was pregnant with my daughter....she lives on in me and in every person who has enjoyed an afghan I made them.  I laugh every time I think of that ridiculous show with the Urkel character, because I sat with B's dad, before he passed, and laughed with HIM!  Easter is forever changed for me because for many years I shared it (and untold other precious moments) with a special little girl, who, though she is gone, lives in me still.

So, I guess all this is to say.... My bucket list is:  Pass it on.  Whatever it is that I am, that I know, that I can give....I want to pass it on.



Thanks to all of you, who have given so much of yourselves to me. - love, c

Saturday, January 14, 2017

Sew Chaotically! - Bamboo knit T-shirt dress - M6886


B found this luscious, soft, and rich bamboo knit at Gala Fabrics when we were in Victoria.  I knew it would make a great t-shirt dress!!  I used same pattern I'd used when I made my dress from the panel knit Ruthie gave me and interrupted my already blogged sweatshirt making to make this little dress because I wanted to work with the material before using it in the sleeves of her Linden Sweatshirt!!!








In person, the sleeves do not stand stiffly at attention as they seem to here!!!

My Mannie doesn't have a very cute bootie!!!

I am inordinately proud of this neck band!!!  In the pattern, only the v-neck version has one.  The others are merely folded under so I made this one per the instructions from these tutorials:
Colette: How to bind knit edges
Margaret, From Sewing Machine Warehouse: How to make a t-shirt in 5 easy steps
Lucky Lucille: How to hem knits


This dress is so comfy/cozy and despite the fabric's softness, it doesn't cling, holds its shape very well and has probably gotten more compliments than any other thing I've made!!    AND....it was super easy!!  Sew Chaotically!!! - c

Thursday, January 12, 2017

Melanoma Big Dogs Pool their data for side effects with Nivolumab (Opdivo)


I put this together about anti-PD1 back in 2014:  Background and latest info on anti-PD1 for melanoma

Now melanoma big dogs have come together to publish this:

Safety Profile of Nivolumab Monotherapy: A Pooled Analysis of Patients With Advanced Melanoma. Weber, Hodi, Wolchok, Topalian, … Sznol, et al. J Clin Oncol. 2016 Nov 14.

We conducted a retrospective analysis to assess the safety profile of nivolumab monotherapy in patients with advanced melanoma and describe the management of adverse events (AEs) using established safety guidelines. Safety data were pooled from four studies, including two phase III trials, with patients who received nivolumab 3 mg/kg once every 2 weeks. We evaluated rate of treatment-related AEs, time to onset and resolution of select AEs (those with potential immunologic etiology), and impact of select AEs and suppressive immune-modulating agents (IMs) on antitumor efficacy. Among 576 patients, 71% experienced any-grade treatment-related AEs (most commonly fatigue [25%], pruritus [17%], diarrhea [13%], and rash [13%]), and 10% experienced grade 3 to 4 treatment-related AEs. No drug-related deaths were reported. Select AEs (occurring in 49% of patients) were most frequently skin related, GI, endocrine, and hepatic; grade 3 to 4 select AEs occurred in 4% of patients. Median time to onset of select AEs ranged from 5 weeks for skin to 15 weeks for renal AEs. Approximately 24% of patients received systemic IMs to manage select AEs, which in most cases resolved. Adjusting for number of doses, objective response rate (ORR) was significantly higher in patients who experienced treatment-related select AEs of any grade compared with those who did not. ORRs were similar in patients who did and patients who did not receive systemic IMs. Treatment-related AEs with nivolumab monotherapy were primarily low grade, and most resolved with established safety guidelines. Use of IMs did not affect ORR, although treatment-related select AEs of any grade were associated with higher ORR, but no progression-free survival benefit.

No real news here.   These adverse events and their rate of occurrence are consistent with what we have known for some time.  In this previous post Weber and Agarwala discuss: Side effects and how to manage them in targeted and immunotherapy for melanoma

There are many other posts regarding side effects on this blog including My Story and an ever evolving post of unusual and unfortunate Side effects to immunotherapy Part 6!

But ultimately....immunotherapy has given melanoma patients a fighting chance:  Nivolumab Shows Impressive OS in melanoma

All my best - c

Wednesday, January 11, 2017

The trial of trials!

With many dear ones in need of a melanoma solution they have not yet attained...having already tried "conventional therapy" without the effect they need....they now find themselves in dire straits with limited options....not just because they have tried many things already...but because exclusions on new trials bar their participation given the medications they have already used and the expansion of the disease they now carry.  How can this be?  How can those most in need be limited in their pursuit of treatment?  How can a person with a certain death sentence if no effective treatment is attained, be told they do not have the right to choose or participate in treatment options?  We already know that pharma is in business to promote their products and improve their market and subsequent income.  It is therefore, not in Pharma's best interest to allow peeps unlikely to do well in their trials and risk 'messing up' outcomes and potential profits.  We also know that doctors and patients do not always share the same approach to care and treatment:  Patients vs Docs - Treatment goals for cancer patients
With all that as background - I present...

An Op-Ed from the smartest man I know.... THE TRIAL OF TRIALS!

The right-to-try law, enacted in 31 of our states, asserts that any individual diagnosed with an "incurable disease" or "terminal illness" has the "right to try" any treatment "that has been deemed safe in Phase 1 testing, even though the agency [FDA] hasn't determined their effectiveness."  However, the right-to-try does not mean that you really have ACCESS to these treatments. Rather, it is just that someone recognized your right to try them.  It's as if you have been given a driver’s license and a car, but no keys.  Despite this law, barriers to access continue. Patients remain burdened with the need to find a physician who agrees to prescribe the medicine/treatment, as well as a facility that will accept the risk of treating a patient in this manner.  A drug company must provide these outrageously priced medicines, otherwise the patient must find a way to pay for them and all the additional components.  Any person dealing with a significant disease process is well aware of and familiar with insurance denial of services!!  All this combines to make "the-right-to-try" a necessary, but far from sufficient condition, to insure access to treatment when it is most needed.

What we really need, I think, is a duty-to-provide law - an idea that is very straightforward, but exceedingly difficult to implement in our current medical structure. The dysfunction of our current drug development and delivery system revolves around three issues:  Money.  Science.  Death.  Making money is the primary goal and money, i.e. the financing of the pharmaceutical industry and interrelationship between Big Pharma, the NIH, and the government agencies that are supposed to regulate them, is entirely tilted in the direction of making sure Pharma makes its money. Sadly, science is merely a tool Pharma uses in order to make its products. There is no commitment to science per se.  There is no expectation or facility to move forward in a thorough, scientific manner in which data is collected, utilized and compared by ALL participants. Pharma, the NIH and the FDA do not really care about the individuals they abuse in order to make the science work for them.  The people in clinical trials are mere statistical fodder.  Death is the ultimate threat that Pharma, health insurance companies, etc. use to compel hapless patients to "volunteer" for their trials and enforce their regulations and rules in what is often an arcane process of their own design.  Ironically, death is also often noted to be the end point of their studies.


To work effectively, the whole process needs to revolve around a patient centered system with its primary focus on saving each individual person. That means building a statistical case from many points (individuals), working from the bottom up, rather than the bulk approach of working from the top down.  This requires greater ability to process the data but with advances in data collection, subsequent analysis, and ease of communication, all facilitated by computers we now possess, we have the technological ability to do just that.  It is imperative that we abandon the rigid bureaucratic system that has infiltrated, stultified and dehumanized the entire effort.  Why for instance, in heaven’s name, use dacarbazine or interferon as comparators to drugs that we KNOW are many times more effective in melanoma patients?!  We are well aware of the limited efficacy of these older treatments from decades of use.  We needn't subject more patients to these drugs in trials.  We KNOW the results.

The clinical trial system needs to be revamped so that patients are matched to treatment options that give them the best chance to survive their disease. Currently, when seeking initial care, though the system is not particularly user friendly and many needed options remain unavailable, like adjuvant care in early stage melanoma, patients do have better access to treatment.  Treatment options change dramatically for patients who have been in the system for some time, having tried many prior therapies, yet are now STILL in desperate need of treatment.  These souls ironically find doors to additional options firmly closed through bureaucratically created trial exclusions.  Bottom line - terminal patients, no matter how they arrive at that point - should have access to the complete range of drugs - every drug in every phase - that may help them.


I call this "The Trial of Trials”!  The mother of all trials, because it would allow a group of physicians, or a board of physicians, to provide access to any trial with the most potential to help the individual patient.  The right to try means that, patients who are: Stage IV, have a terminal illness, have no other options, have arbitrary exclusions preventing their participation in existing trials, have tried other things, for whom nothing  is working, and they are themselves willing to take the risk - should have any treatment made available to them.  The duty-to-provide comes in through making sure that the financial access is provided by big Pharma and the insurance companies. Utilizing this idea, I think we could do a lot better in terms of providing patients for clinical trials and achieving valuable information about what works and what doesn’t more quickly by using supercomputers and other advanced techniques to ferret out the data. The data itself must be completely transparent, so that all of the people who are participating in the process, patients and the entire scientific community included, know exactly what has happened. This is something that’s been specifically avoided in the current system in order to maintain the proprietary nature of the data to protect the drugs and their financial reward for the pharmaceutical companies.  The secretive nature of the current system impedes science and enhances human suffering.  We can do better.

Although these are new approaches, they are not impossible, rather, they are imminently feasible benefiting patients, pharmaceutical companies, insurance payers, and ultimately science.  Real. Live. Science.   

       ~Brent Morris, MD

Science with a heart.  Who knew?  Thanks, B.  - c

Monday, January 9, 2017

SRS (radiation) better WITH ipi (immunotherapy) rather than AFTER in melanoma generally, and brain mets specifically


Radiation WITH immunotherapy (or just prior to) has become a treatment researchers have come to recognize as much more effective in melanoma than either therapy alone.

Here is one post from December that includes links and even more links to a number of articles that make that clear:  Immunotherapy (and ipi) better with radiation: AGAIN!

Some of these reports focus on the improved outcomes of the combo vs the components alone.  But it is also clear in some of these that folks do better when radiation is given prior to or WITH immunotherapy - rather than when radiation is given AFTER.  Now there's this:

The effect of timing of stereotactic radiosurgery treatment of melanoma brain metastases treated with ipilimumab. Cohen-Inbar, Shih, Xu, et al. J Neurosurg. 2017 Jan 6.

Melanoma represents the third most common cause of CNS metastases. Immunotherapy has evolved as a treatment option for patients with Stage IV melanoma. Stereotactic radiosurgery (SRS) also elicits an immune response within the brain and may interact with immunotherapy. The authors report on a cohort of patients treated for brain metastases with immunotherapy and evaluate the effect of SRS timing on the intracranial response. All consecutively treated melanoma patients receiving ipilimumab and SRS for treatment of brain metastases at the University of Virginia between 2009 and 2014 were included in this retrospective analysis; data from 46 patients harboring 232 brain metastases were reviewed. The median duration of clinical follow-up was 7.9 months (range 3-42.6 months). The median age of the patients was 63 years (range 24.3-83.6 years). Thirty-two patients received SRS before or during ipilimumab cycles (Group A), whereas 14 patients received SRS after ipilimumab treatment (Group B). Radiographic and clinical responses were assessed at approximately 3-month intervals after SRS. The 2 cohorts were comparable in pertinent baseline characteristics with the exception of SRS timing relative to ipilimumab. Local recurrence-free duration (LRFD) was significantly longer in Group A (median 19.6 months, range 1.1-34.7 months) than in Group B patients (median 3 months, range 0.4-20.4 months).  Post-SRS perilesional edema was more significant in Group A. The effect of SRS and ipilimumab on LRFD seems greater when SRS is performed before or during ipilimumab treatments. The timing of immunotherapy and SRS may affect LRFD and postradiosurgical edema. The interactions between immunotherapy and SRS warrant further investigation so as to optimize the therapeutic benefits and mitigate the risks associated with multimodality, targeted therapy.

Folks clearly did better when SRS was given before or during treatment with ipi, though there was an increased incidence of perilesional swelling for those patients. However a median recurrence-free duration of: 19.6 months vs 3 months!!!!  Hhmmmmmm....

On the topic of brain mets, here is a link to a nice review of treatment (Thanks, Eric!): Online library.wiley.com - Melanoma central nervous system metastases: current approaches, challenges, and opportunities 

Wishing you all my best. - c

Saturday, January 7, 2017

Sew Chaotically! - Grainline's Linden Sweatshirt, X's 3!


Now that they have been delivered....I can tell you The Story of the Sweatshirts!!!

Sew, chaotically.....I had this idea!!!  Sweatshirts for the sisterhood!!  For Christmas!  Never mind that I had never made one.  Never mind that for two of them I was going to go against the grain!!! Here. We. GO!!!!!!!!!!!!!!

Pattern attained.  Love Grainline everything I have ever made (Morris Blazer  and  Alder shirt dress 1 and 2 ) Great reviews from other sewists.  It will be awesome!!!

Bright knits for Kik.  Using the literal last bits of that red ponte that made the Red Morris Blazer  and the Rosie Red Party Dress!!  It went together most excellently!!!  B thinks it is fab.  Created little side vents with the bottom band!  Totally psyched!!!

Did review my Colette book on working with knits as well as this great video by Margaret from Sewing Machine Warehouse in Australia: How to make a T-shirt  I think she is just awesome!!  I love her tutorial on Serging curves and corners as well!!!

Uh, oh!  Nervous decision time.  Which color for Ruthie's sleeves vs mine?  What am I thinking using silk for the front and back panels of a pattern that clearly says it is for KNITS????!!!!!  But....fabric chosen.  Moving forward with this one as mine (that way I can practice on it)!  Using what is probably the "wrong" side of the silk as it is sort of watery looking...but I like that with this beautiful textured knit that Ruthie gave me for my 50th birthday that I have been afraid to cut into!!  Well, that's all past...as I cut out a (yet to be made) faux wrap dress and was thrilled to have enough left to use here!!

Hey!!  That turned out pretty well!!!  Got tons of compliments on wearing it.  Folks who know I sew many of my clothes thought I bought it!  I'll take that as a good sign! To make the side slit hem, this tutorial was great: How to create a side seam slit By: Sewmamasew.com
And here's Ruthie's!  Used bits of luscious bamboo fabric I used in my yet-to-be be-blogged t-shirt dress, made first so as to practice with the fabric...which is awesome!!  However, since this knit was nothing like the textured knit in my top, I still felt like I was attaching a knit neck band to a silk woven bodice for the first time!!!  (As B had predicted!)

She got an 'un-pieced back' and I used the 'right' side of the silk because it seemed to match the burgundy knit better.

The third time's the charm - when attaching a knit band to a woven!  Meaning - my top, her top - which on first try was too large because I was worried I would pucker the silk if I made it too small - and after unpicking...the third time looks - good!!  If I say so myself!!!

Proud of my hem and bravery in using contrasting thread for top stitching!!!

Is it just me, or do they look a little confused?

Yes, I re-purpose boxes!  I think they liked them!  Hope so.  Anyhow, it was a really fun project.  I have plans for more Linden Sweatshirts for me!  Knit...ALL knit...this time!!!



Merry Christmas up in the sisterhood!!!  Sew Chaotically!!! - love, les

Thursday, January 5, 2017

Sew Chaotically! - All things bright and beautiful....


Living in Chattanooga leaves you with one fabric shopping choice - Jo-Ann's. To my dismay, I've found that Atlanta is not much better, though it does have Gail K Fabrics, that is okay, and Forsyth Fabrics, that is actually amazing, if you are in the market for upholstery and home decor pieces.  So, on a recent amazing trip that included time in New York and Paris I was lucky to be spoiled with fabric shopping in both!!!

NEW YORK!!!!
I've ordered some things from Mood, but on-line ordering seems rather risky to me...though I loved the things I got.  So, of course, I was thrilled to get to visit the sewist mecca in person.  It was fabulous chaos...but a bit overwhelming!! This video captures it pretty well:  MOOD!!!!   I didn't end up getting anything there....this time!!!

I checked out Metro Textile  as it is mentioned on many sewist's blogs and instagrams. It's a pretty small place, on the eighth floor of its building (if I remember correctly) and yes, I met the famed, slightly cantankerous and exuberant Kashi!  I picked up this rather substantial knit (not a scuba, though) that I'm think of using for a dropped waist dress or maybe a flippy skirt:
 M7244 knit dress? OR M6842 flippy skirt?

I wandered in and out of many places.  If you are looking for sequins and sparkles there are streets full of nothing else!!!  But my favorite shop was this one:  B and J Fabrics  So organized.  So fabulous.  So wonderful!!!  I actually LOVED every piece I saw!!!!  Here are my prizes....


Thinking of a short version of S8125 (Mother's Day Dress) out of this soft and beautiful Liberty of London cotton.
Maybe another S8014, full skirted shirt dress from this pretty pale blue cotton with red embroidery?
Maybe the A-line version of S8014?
This cotton flannel is soooo soft and cozy.  A tunic maybe?
PARIS!!!!
Once in Paris, B and I were traipsing through all the streets at the base of Montmartre and the Sacre'-Coeur for en tissu!!!

Tissus Reine was amazing.  Interestingly, they sold Liberty of London cottons for only 25.90 Euros per meter while they will cost you $36.95 a yard in New York!!!!  Just letting you know!!!  Thinking of simple blouses from the two Liberty prints below....


At another shop in the area....a more chaotic sort of place whose name escapes me, I picked up these pieces:
I know! This fabric is quintessential Provence table cloth fabric....but I think it will be a lovely midi length Hollyburn skirt next summer!!!
I have extravagant (for me!!) plans for this jewel toned (rather cheap) silk...if it is silk...seems a bit more like a crepe.  I'm planning a top from the Grainline Studio's Linden sweatshirt with this fabric as the body and a knit for the sleeves, neck and waist bands???!!!!
Then there was  Frou Frou Fabrics with so many cute prints and matching solids.
There were lots of quilting and knitting supplies as well....but I was attracted to this cotton print:
And when I found out it was called:
That was all she wrote!!!
Though ordered from Tessuti in Australia more recently...soooo excited!!  And look how prettily packaged!!!
I am beyond spoiled I realize, and quite excited about all my sewing plans!!!  At this moment all pieces are bright and beautiful ~ the garments all sew up easily, turn out perfectly, and are exquisite works of art!  We'll see what REALLY happens!!  I do have some more generous sewing intentions that I will be sharing soon!!  Thanks for playing with me, B!

Enjoy your plans, whatever they include!! - love, c

PS....One of these things is not like the other....in that....it's already been used to create TWO BEEE-u-tiful tops!!!