Happy Halloween...and then some!!!

Trick or treat?!!!

That's my punkin!

My sillies!!! Roo brought over pumpkins a week ago so her daddy could have his annual carving.

AND on Friday......

Hoo Hoo!!!  Who IS that teacher?!!  (Roo wanted me to pass to dear Jeanne and the Kid, that though her teen math students may not have been totally impressed that she was dressed as an owl....they LOVED the hat!!!!!!)

 AND tonight.....

A happy punkin carver visits her big brother....

A broken doll....

And a gangster's moll...

The cutest Bonnie and Clyde.....

EVER!

And now....
Halloween has been something my kids have always had a lot of fun with, as Spiderman and Pinkie Pink Power Woman, Pocahontas and Powhatan, monsters, ghouls and princesses.  Brent has carved Jack-0-Lanterns with them  EVERY year.  But the day before Halloween in 2010 it was a little different, spooky even....Craziness again
That was when I had my last surgery for melanoma.  A tonsillectomy it just so....weirdly...happens.  I was lucky enough to enroll in my Nivo/Opdivo trial that December and have been NED (with no evidence of disease) ever since.  I feel so incredibly lucky and grateful to be here and share the fun one more year.

More than that...I am the richest woman in the world.  Rich in friends and fun and love.  My dear sweet Jeanne remembered....and posted this:  91 days of happiness  You have no idea how much your support has meant to me all these years!

But, that's not all!!!!  I wasn't sure it would ever happen again.  But it did!!!  I got this:

Yes, dear ones!!!  A beautiful potty pic, from Tammy B!!!!  (For a full explanation check out this post....in the part titled - Find the fun:  What to say and do for a cancer friend)  With a caption that read:  "Happy 5 years free from that cancer BITCH!"

With support and joy and love from all my peeps....life really doesn't get any better than this.
Wishing all of you more treats than tricks and much love to all my dear ones!!! - c

Message to foks re T-VEC

Hey Guys,
With T-VEC's recent FDA approval, it is definitely good news to have one more treatment made available to melanoma patients who need it.  It seems as though it may be a good treatment for folks who have one or few pesky inoperable lesions that could be injected as well as a good way to enhance effectiveness of various systemic treatments.  Here's some info I have posted about T-VEC over the last couple of years....
An early intro into some of the first study results:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html
Weber talks about ipi/T-VEC in Paris conference in 2014:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/slides-from-paris-melanoma-meeting.html
Intralesional therapies as reported at ASCO 2015 - reports on T-VEC alone, T-VEC with ipi, and T-VEC with Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html
Hope that helps.  All my best.  celeste

The latest anti-oxidant controversy

Medscape article re selenium/Vit E and Prostate cancer - 2014

This article from last year notes..."data from the much publicized Selenium and Vitamin E Cancer Prevention Trial (SELECT), which sought to determine whether these supplements could protect against the development of prostate cancer, confirm that both antioxidants can be risky business for men.  ...men receive no preventive benefit from either selenium or vitamin E supplements; in fact, for certain men, these supplements actually increased the risk for prostate cancer."  A researcher interviewed noted, "Many people think that dietary supplements are helpful or at the least innocuous. This is not true."

"The cohort of 4856 men was culled from SELECT, the larger phase 3 placebo-controlled trial in which more than 35,000 men were randomized to high-dose vitamin E (400 IU/day) and/or selenium (200 µg/day) supplements.  SELECT began in 2001 and was expected to run for 12 years, but it was stopped early, in 2008, after participants had been on the supplements for an average of 5 years. The results demonstrated that there was no protective effect from selenium and suggested that vitamin E increased prostate cancer risk.  Although the use of the supplements stopped, the study actually continued. After 2 years of follow-up, the men who took vitamin E had a statistically significant 17% increased risk for prostate cancer.  Notably, the rate of prostate cancer detection was higher in the groups that received either supplement alone or a combination of the 2 than in the placebo group (but the difference was significant only in the vitamin E group)."


Medscape re antioxidants and melanoma - 2015

This article published October 23 reports...."though the data are preliminary, findings from a new study may shed some light on why supplementing with antioxidants may be a bad idea for patients with cancer." 
"Our data suggest cancer cells benefit more from antioxidants than do normal cells," said lead author Sean Morrison, PhD, director of the Children's Research Institute and Mary McDermott Cook Chair in Pediatric Genetics at UT Southwestern Medical Center in Dallas, Texas. "It raised the concern that people with cancer may want to think twice before they supplement their diet with large doses of antioxidants."
In their study, human melanoma cells taken from several patients were [grafted into mice] In mice that were given the antioxidant N-acetyl-cysteine, cancer spread was accelerated. It significantly increased the frequency of melanoma cells in the blood of some of the mice and significantly increased metastatic disease burden in all of them.  "At least in the mice, the antioxidants promoted the capacity of the cancer cells to spread and metastasize," he said.

The authors found that that metastasizing melanoma cells experience very high levels of oxidative stress, which in turn leads to the death of most of these cells. Oxidative stress therefore limits distant metastasis by melanoma cells. But by administering antioxidants to the mice, more of the metastasizing melanoma cells were able to survive and increase the metastatic disease burden.
Even though this study was done in mice, Dr Morrison feels that the results can be extrapolated to humans. "We have previously shown that the behavior of human melanomas in mice are predictive of how melanoma behaves in humans.  ...  But it is important to remember that our study was performed in mice and not in actual human patients."

The report goes on to reference the report above as well as one in which patients with lung cancer were given selenium or not.  Those who were given the supplement had a greater incidence of a second tumor, "but it was not statistically significant and therefore could have been due to chance."

Another study looked at [genetics] to shed more light on which population of men who already have prostate cancer might be most harmed by selenium. Among men with the AA genotype, higher selenium levels were associated with a 40% reduced risk of presenting with aggressive disease, whereas among men with the V allele, higher selenium levels were associated with an almost doubling of the risk for aggressive disease.  Phillip Kantoff, MD, director of the Lank Center for Genitourinary Oncology, and vice chair and chief, Division of Solid Tumor Oncology, Department of Medical Oncology at the Dana-Farber Cancer Institute in Boston, Massachusetts, was the senior author on the genetic study.  [When interviewed, he noted:]  "The study is interesting. There is a fair amount of data supporting this. In fact, there are 2 follow-up studies of SELECT study showing that over time the arms that got vitamin E or selenium had more or more aggressive cancers."
"The underlying mechanism is still not clear but this is one possible one," Dr Kantoff added.

And then there was this about Vitamin D:  Vitamin D and melanoma 

Bottom line:  I think there is much we don't understand about many things....and that certainly includes the behavior of cancer cells .  I have NEVER been one to recommend boat loads of vitamins and supplements; just because a little is good doesn't mean a lot is better!  As a rather brilliant nursing professor I had noted, "Americans have the most expensive urine in the world."  Referencing the fact that most water soluble vitamins are simply excreted by the body and the money we paid for them is literally dollars down the drain.  These reports as well as other previously existing data warn that supplements can also cause harm.  If I were a man with prostate cancer, I certainly wouldn't be taking selenium and Vitamin E supplements. On the other hand, I see no need to panic.  We have also long known that folks who eat a well balanced diet, heavy in fruits and vegetables, and get regular exercise, lead longer, healthier lives with less incidence of heart disease, cancer, and dementia than those who do otherwise.  I see nothing scary in an orange.  And, melanoma or no, that is the path I will continue to follow.

Eat your colors! - c

Trial to test aspirin's ability to prevent cancer relapse...

You may remember this recent post:  An aspirin a day keeps melanoma at bay and makes immunotherapy work better!

Basically, we have known for a long time that NSAID's (and aspirin in particular) helps prevent a variety of cancers.  Further, in the study included in my post, genetically engineered mice attained greater benefit from immunotherapy when given NSAID's along side!

Now, there's this:

"Cancer Research UK and the British National Institute for Health Research are launching the Add-Aspirin Phase III trial with plans to recruit 11,000 patients who have been treated or are being treated for bowel, breast, esophageal, prostate or stomach cancer.  The study could run for as long as 12 years as researchers monitor the effects of daily aspirin use for five years on cancer."  Here's the link:  Large trial to test aspirins ability to prevent cancer relapse

"Researchers plan to split participants into three groups: one-third of the participants will receive a 300 mg aspirin tablet each day; one-third will be given 100 mg tablets; and the rest will receive a placebo. Doctors and patients will not be told which of the treatments the participants are given.  The participants will be closely monitored for any effects on their health, most significantly whether their cancer has come back."

While melanoma is not included here...I think this could provide a lot of good information for all of us.  Good luck, ratties!!!! - c

Intrathecal IL2 for melanoma patients with leptomeningeal disease - long-term efficacy!!!

Long-term efficacy of intrathecal interleukin-2 (IT IL2) in metastatic melanoma patient with leptomeningeal disease (LMD).  Glitza, Rohlfs, Basset, et al.  Abstract 517. Immunotherapy and Cancer.  September 2015.

Melanoma patients with LMD have an extremely poor prognosis. Here, we present long-term follow-up data for patients with LMD treated with IT IL2 at MD Anderson....  Diagnosis of LMD was based on CSF cytology and/or radiographic findings on MRI.  IL2 was administered through an Ommaya reservoir.  Pts received 1-5 doses/wk of IT IL2.... followed by single doses every 1-3 months as maintenance.  [Statistical analysis revealed....]

Among 42 patients, 3 patients had positive CSF cytology only, 11 had radiographic findings only, and 28 had both.  Symptoms due to increased ICP [intracranial pressure] developed in all pts during induction phase, including headache, nausea, and were controlled with supportive meds and/or CSF removal.  Median OS = 9.1 months, 16% of patients had OS greater than 24 months.  Patients with LMD only without extracranial (ECD) disease had median OS of 38.4 months from the start of IT IL2.  Pts with ECD that was was controlled (OS = 11 months) survived longer than pts with uncontrolled ECD (6.5 months), although the difference was not statistically significant.  Previous or concurrent parenchymal brain mets had no impact on OS.  Shorter OS was associated with the presence of neurological signs at baseline and positive CSF cytology.  OS was not significantly associated with age, gender, LDH, or BRAF mutation status.

Conclusion:  ....results provide evidence that IT immunotherapy can benefit select patients with LMD.

Still a sucky situation for too many, but at least this provides some proof of benefit for intrathecal administration of IL2 for leptomeningeal disease.  Just wish 'long-term efficacy' was a bit longer!!!!  Hopefully, this is only a start!! - c

St. George in October restores the soul....

The party ALWAYS starts at Boss Oyster!!!!

Sitting on the Dock of the Bay....

We got sunscreen!  (And are prepared to head into battle with William Wallace!)

Mullet catcher!

Mullet Catcher girl!!  Way to use a casting net, Roo!!!

Prep time. Yep, if we catch it, we eat it!!!  YUM!

Pretty Ruthie!

No...they are not ALL mine!  But, they were delicious!  Thanks, Irina!

Me and Fredo

Freedom....

Shady lady

Shark alert!!!

Pretty Roo!

Why the hole?  Only he knows...

The cutest beach bum!

Seashells by the seashore...

Hope flies on dragonfly wings....

The beauty...

Family

While there were no turtles...it was beautiful and peaceful...providing the kind of feeling that seeps in and sets up home for a soft place to think upon in difficult moments.  St. George has always been generous to me that way.  Hard to believe that this was 5 years ago:  Inauspicious beginnings
Along with this:  Dock of the bay
And this: roygbiv
And there was Sally:   Sally the loggerhead turtle
And 2 years ago...it was a ten years with melanoma-versary:  sgi pictures of summer 2013
Thoughts on:  Ten years with melanoma
So, thanks again, St. George.  I am grateful to have tasted your bounty and rested while looking upon your bays and inlets.  I am so fortunate that my wonderful peeps once again indulged me, sharing their love and support.........now 5 years NED, 12 years with melanoma and 51 years blessed.  Much love to you all - les

Review of abscopal responses after radiotherapy in melanoma patients

A systematic review of abscopal responses following radiotherapy in patients with metastatic melanoma treated with ipilimumab.  Chandra, Wilhite, Balboni, et al.  Oncoimmunology.  May 2015.

"Case reports and preclinical data suggest radiotherapy and immunotherapy may synergize to generate 'abscopal' responses outside the radiation field.  This phenomenon remains relatively unexplored.... We evaluated 47 consecutive metastatic melanoma patients treated with ipi and 65 courses of radiation.  Responses of index lesions outside the radiation field were compared before and after radiotherapy...  Median survival was 28 months, with an estimated 20% of 5 year survival.  Index lesions shrank in 7 instances prior to radiation therapy (11%), compared with 16 instances after radiation therapy (25%); in 11 of the later instances (69%), the index lesion had been increasing in size prior to radiotherapy.  In 68% of cases, radiotherapy was associated with an improved rate of index lesion response....  Our...review...suggests that a subset of patients may have more favorable out-of-field responses following treatment with radiation. Interestingly, we found that multiple fraction radiation regimens were associated with a more favorable response.  These results are encouraging regarding potential synergies between radiation and immunotherapy, but suggest that attention and even prospective testing of radiation parameters critical to producing abscopal effects...would be of value."

Cool!  Now keep in mind that this is talking about 'abscopal' responses....not just a general enhancement of effectiveness when immunotherapy is combined with radiation....as this post was referring to:  Why immunotherapy is better with radiotherapy....

Here's an early post about abscopal responses:  Abscopal effects of radiotherapy

An older post about ipi, radiation, increased effect and abscopal responses:  ipi and radiation: a good combo for melanoma

Finally, there have also been abscopal responses noted with intralesional therapy...which do not involve radiation:  asco 2015: intralesional therapy for melanoma

Obviously, there is much more to learn about the mechanisms that come into play when immunotherapy and radiation are  combined...both for generally increased benefit and abscopal responses in particular.  At least folks are now paying attention and trying to figure it out rather than arguing about whether it is real. Hang in there, ratties.  You have taught us all amazing things!   - c

Well done, Brittany. May you rest in peace.

A year ago I posted:  "...the Hebrew word, the word timshel - 'Thou mayest' - that gives a choice.  It might be the most important word in the world.  That says the way is open.  That throws it right back on man.  For if - 'Thou mayest' - it is also true that 'Thou mayest not'." ~ John Steinbeck.  East of Eden

It was at that time that Brittany Maynard, a 29 year old with Stage IV glioblastoma, an affliction for which she had no cure, left her home in California for Oregon so that she and her family could access her right to self administer physician prescribed lethal medications made available by the Death with Dignity Act.  She and her family also shared her story in their fight to make the rights she sought available to others....in all states. Public discourse ensued as others told their story and shared their perspectives.  Here is a link to that post:  Death with dignity. Timshel.

Brittany died last November, in the manner she thought best for her and those she loved.  At that time, only Washington, Oregon, Montana, and Vermont allowed doctors to prescribe life ending medications.  However, Brittany's family continued to lobby for that right to be extended to those who sought it in California.  And this month:  California legislature approves assisted suicide

A few days later, California Governor signs assisted suicide bill into law 

I am positive that such end of life decisions are never easy for any individual or family.  I think I know what I would want under certain circumstances, but I suspect that even I cannot be certain of my own final decision until I am ultimately confronted. I do not think that any one option is right for everyone, but I am convinced that we all deserve the right to choose.  Even so, given that the laws providing for legal assistance with suicide are geographically limited and selectively defined (excluding the option for folks with dementia as well as those who have a progressively debilitating disease, but not a definitive 6 months-left-to-live window) many, many people will not have death with dignity as a choice. Despite sweeping death with dignity law few will have that option

While others may interpret the following poem very differently, I think the words of Dylan Thomas fit this dilemma perfectly.  Though I never met her, I think there is no one who "raged against the dying of the light" more than Brittany Maynard.  She did not go gentle.  She went strong....and knowing....with "deeds" that met her purpose and were a gift to many. 

Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Bless you and yours, Brittany.  Your life has been a light that continues to shine. Timshel. - c

Why immunotherapy is good for lots of folks...not just those with melanoma and how radiotherapy may make it even better!

Radiation and checkpoint blockade immunotherapy: radiosensitisation and potential mechanisms of synergy.  Lancet Oncol. 2015 Oct;16(13):e498-e509.  Sharabi, Lim, DeWeese, Drake.

"Checkpoint blockade immunotherapy has received mainstream attention as a result of striking and durable clinical responses in some patients with metastatic disease and a reasonable response rate in many tumor types. The activity of checkpoint blockade immunotherapy is not restricted to melanoma or lung cancer, and additional indications are expected in the future, with responses already reported in renal cancer, bladder cancer, and Hodgkin's lymphoma among many others. Additionally, the interactions between radiation and the immune system have been investigated, with several studies describing the synergistic effects on local and distant tumor control when radiation therapy is combined with immunotherapy. Clinical enthusiasm for this approach is strengthened by the many ongoing trials combining immunotherapy with definitive and palliative radiation."  

The article goes on to discuss the mechanisms of immunotherapy (Something that has been beaten to death on this blog!!!) as well as the reasons for potential synergy between radiation and immunotherapy, as well as a reintroduction of..."the notion of radiosensitising immunotherapy, akin to radiosensitising chemotherapy, as a potential definitive therapeutic modality."

Clearly, this is a plan I like.  Help more folks.  Make what is good even better!!!  More links to articles noting the synergy between radiation and immunotherapy:  

Radiation for melanoma: better when combined with immunotherapy! 

Way to go, ratties!  Way to go! - c

Not really news, but once again: ipi/nivo combo is better than ipi alone!

Abstract 2860:  Improved clinical response in patients with advance melanoma treated with nivolumab combined with ipilimumab compared to ipilimumab alone.  Hodi, Postow, Pavlick, Agarwala, Wolchok, et al.  AACR 106th Meeting, April 2015.  Cancer Research.

Treatment-naive patients with advanced melanoma were randomized 2:1 to ipi 3mg/kg combined with nivo 1mg/kg or placebo (ie ipi alone) q3wks for 4 doses, followed by nivo 3mg/kg or placebo...q 2 wks until disease progression or toxicity.  

In BRAF wild type patients:  ORR = 60% in the nivo/ipi group vs 11% in the ipi group.  Complete  response was reported in 12 and 0 patients respectively.  Median change in target lesions was 57% reduction in the nivo/ipi group vs 4% increase for ipi alone.  Median duration of response was not reached in either group.   Median PFS was 8.9 months for combo, 4.7 months for ipi. In BRAF mutation positive patients, the results for ORR and PFS were similar.  

A higher rate of adverse events was noted in the combo group....leading to more frequent discontinuation.  Patients who discontinued the combo due to toxicity had a 67% response rate and most continue to respond.  Immune side effects were manageable with standard treatment interventions, and the majority resolved with immune-modulating meds.

So....stuff we already knew. The ipi/nivo combo provides better response rates and a greater decrease in size of target lesions compared to ipi alone...though with more side effects.  A great pearl: for those who had to stop the combo because of side effects, most CONTINUED TO RESPOND! And...BRAF status seemed to make NO difference.

And.....October 1 there was this:  BMS news release re FDA approval of nivo/ipi combo at least for some

Now why not for everybody...since we KNOW BRAF status is NOT related to success in this instance? Why not folks who are NOT treatment naive....since they may need it more than others? Those peeps may need to be informed that their response rate may be decreased from the treatment naive folks (remember the results from the sequential study!) but what results will they attain without a chance at the combo at all????!  It seems that the FDA has a very strange, tunnel vision approach to science and an inhumane approach to saving lives.  But, step by ever such small steps....we are getting more help to those in need!

Keep on truckin ratties! -c

Sew Chaotically! - Last of summer sewing

Patterns involved in my last 'summer' sewing of the year.

I purchased McCall's M6959 with material and binding for this dress as well as a bright red and yellow print and pattern for Ruthie to make last year!  The intention was to use them for view A, which Ruthie rapidly and dutifully did, reporting that it was the best wrap dress pattern she had ever made...feeling that other patterns had not come together so easily nor fit so well without gaping and sagging in unfortunate places.  So comforted, it was still a year later before I got going on mine!  As I began cutting mine out, I realized that given the width and linear pattern of my material the full version 'A' was NOT an option.  So....after much pondering, I cut the bodice as shown, doing my best to match things as well as I could.  And while the pattern does not provide a straight sleeveless version using the seam binding, I was set on doing it!!  Overall, I think it turned out pretty well. I agree that it sits and hangs well and have even worn it to work with no wardrobe malfunctions while dealing with busy kiddo's.

Pretty proud of matching up those lines!!!  It was certainly a learning experience regarding picking more appropriate fabric/prints for your plans!

This is material Ruthie gave ME for my birthday, THIS year.  So...at least I was a little more timely with this one!  It is New Look 6053, view c.  It was a super easy little skirt.  I may take up the waist a little more on other versions, but I like that this one sits lower on my hips in this maxi version, than I may prefer for a shorter skirt.  I really love this material!!!!

Somehow I never posted this skirt made a couple of years ago.  It is Simplicity 2451, version B.  It went together very easily, though the tweedy, upholstery fabric was on the edge of appropriate for the pattern as it is rather thick with NO give.  The way the pockets come together with the front piece and the yolk is super cool and easy but was pretty thick, creating a smaller fit, than would have been with other softer and more giving material. But, I like the way the gores hang with it...so....a win, I think.

This version is view c from the same pattern.  I cut the waist a bit larger given the tightness of the prior skirt experience, but with the tucks to the front and lighter weight material, I ended up cutting it back down to size.  I really like this pattern, but next time I will attach the three pieces of the waist band (two to the back, on either side of the zipper...and one to the front) to the skirt pieces FIRST, rather than sewing them together into a band that you then attach to the 'finished' skirt.  That way I can do up the side seams in one go and it will make waist adjustments for fit much easier.  Much in the way the Simplicity 1541 Amazing Fit Skirt puts their skirt together.  Why it took me two times before I figured this out...don't know.  But, at least it came to me in the end!!

Inordinately proud of my little piping trim!  It's the small things!!!  Learning as I go. But, these pieces are fun wearable things that I like. So, that's a good thing! Sew chaotically, y'all!!! Love, c

Five years NED = Five whole pies and then some!!!!

By way of explanation for those of you unfamiliar with my pies... 
"Brent found a sweet and touching way to deal with and mark off my treatments as they were completed, especially when he could not travel with me to get them.  PIE!  Frozen apple pie, that he would reheat in the oven just before I got home....carefully cutting away the appropriate amount, but leaving "1/2 DONE!" or "3/4 DONE!" as we made it though.  Ruthie and I came to depend on those to light our way to progress."  
From:  What to say and do (and not) for a cancer friend

That's right!!!  5 whole pies!!!! Bentie, you are cray cray! I love you.

And then there was an engraved goblet, wine and a sweet puzzle.....

Can you read it? "Lessy equals 5 plus or more NED!!!!!"  We used to share pictograms like:  EYE HEART u!  And....it is BLUE!  What a beautiful surprise!  Thank you.

Really!  Who has a rainbow they can DEPEND upon???!!!!  I DO!

 

"Hope flies on  dragonfly wings.
                 Thin glitter
     whisked with the breeze.
                         Such a tiny, delicate song..."

Such beautiful love and gifts, from near and far.  Much love, Jeanne and Kidlet!!!

 

 

 And from my musical guru:  Dondiablo and Madonna - ghosttown remix

And that's just the tip of the ice berg.  A girl has never been more blessed!  Melanoma since 2003.  After Stage IV and Nivo adjuvant trial....NED since October 2010.  Love and care much more than deserved.  Thanks to all of you who have, each in your own special way, carried me through.  Much love - c