Immunotherapy Rocks

Immunotherapy rocks or, in the more restrained but equally enthusiastic language of Science Magazine, “Cancer Immunotherapy is the Medical Breakthrough of 2013.” From a press release,

“The editors of Science magazine picked cancer immunotherapy as 2013’s major medical breakthrough achievement. Cancer immunotherapy is the use of the immune system to fight cancer. This is done by stimulating the patient’s immune system to attack cancer cells. According to an article on NewsObserver.com, “Scientists have thought for decades that harnessing the immune system to battle tumors should be possible, but it has been incredibly difficult to make it work.”

“So far, this strategy of harnessing the immune system to attack tumours works only for some cancers and a few patients, so it’s important not to overstate the immediate benefits. But many cancer specialists are convinced that they are seeing the birth of an important new paradigm for cancer treatment,” said Tim Appenzeller, chief news editor of Science magazine (1).

Cancer researchers say that they “have turned a corner because two different techniques are helping a subset of patients. One involves antibodies that release a brake on (or stimulate) T cells (a type of white blood cell), giving them the power to tackle tumors. Another involves genetically modifying an individual’s T cells outside the body so that they are better able to target cancer, and then re-infusing them so they can do just that. (2).

I love being cutting edge but I love more the prospect of living with this disease versus dying from it. As a cancer patient who has experienced treatment that didn’t work (scary!), the jury stays out on how I will respond to immunotherapy. My fingers stay crossed.

As the Science Magazine experts themselves debated,

“In celebrating cancer immunotherapy—harnessing the immune system to battle tumors—did we risk hyping an approach whose ultimate impact remains unknown? Were we irresponsible to label as a breakthrough a strategy that has touched a tiny fraction of cancer patients and helped only some of them? What do we mean when we call something a breakthrough, anyway?”

But then they went on to say, “Ultimately, we concluded, cancer immunotherapy passes the test. It does so because this year, clinical trials have cemented its potential in patients and swayed even the skeptics. The field hums with stories of lives extended: the woman with a grapefruit-size tumor in her lung from melanoma, alive and healthy 13 years later; the 6-year-old near death from leukemia, now in third grade and in remission; the man with metastatic kidney cancer whose disease continued fading away even after treatment stopped.

As the anecdotes coalesce into data, there’s another layer, too, a sense of paradigms shifting. Immunotherapy marks an entirely different way of treating cancer—by targeting the immune system, not the tumor itself. Oncologists, a grounded-in-reality bunch, say a corner has been turned and we won’t be going back.”

The full text of their thinking is fascinating and worth a read. It is time to celebrate the promise of immunotherapy.

To access my clinical trial took endurance. I not only had to be clinically stable but I needed to countdown to my start date for Medicare, a wonderful government run insurance plan that allowed me to have costs covered even if my care was in Philadelphia. Effective January 1, 2014 the Affordable Care Act (which contains many great improvements even as the rollout leaves us cursing – Oregon being one of the worst states for enrollment fiascos) removes barriers for cancer patients choosing to access clinical trials in state or out of state. Please check out this boring but highly informative webinar that explains cancer care and the affordable care act to look at the list of ways your treatment obstacles may be being reduced right now. Spread the word.

If you know someone seeking a clinical trial I direct you to this resource that I first posted last July.

Finding a Clinical Trial Just Got Easier BY JON GARINN

By almost any measure, clinicaltrials.gov, the website administered by the National Institutes of Health, sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Yet, despite more than a decade of efforts to improve its functionality, simplify access to its database and synthesize its information, navigating the site can be a challenge.

That’s why a Florida doctor teamed with healthcare professionals from dozens of medical centers, research institutes and medical schools to develop MyClinicalTrialLocator. MyClinicalTrialLocator.com, a site designed to make searching for a trial easier.

Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.

The service is free, and access is open to any user, though visitors are encouraged to establish an account so that they can save their searches and receive customized email updates and automatic notifications based on their search criteria. To learn more, visit MyClinicalTrialLocator.com.

There is also http://www.cancertrialshelp.org/cancer-trial-search/.

Go find the best match for you or your loved one.  xo marcy

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Scapegoating of the Disabled 2013

Today I posted on facebook a link that came across my inbox. I editorialized before the post,

“I am a proud voter and a proud beneficiary of social security disability. Both keep me alive to some extent. And now this….I hope they add MARCY WESTERLING to the list – come get me.”

Flyer Targets People with Disabilities

August 2013

People with disabilities are now the target of a hate group in the Portland area. Neighborhoods are being littered with this handbill attacking people with disabilities who receive public assistance. With an underlying tone of violence, this vigilante attack states that people’s names are being posted where they can be seen by taxpayers. The author suggests that receiving benefits makes people with disabilities a threat to the republic.

The Portland Commission on Disability requests that anyone who has received or seen this flyer to please report it so they may track it. Thanks to Human Rights Commissioner, Linda McKim-Bell for bringing this to the Commission’s attention.

Publicly sharing my name for broader use in this context was a conscious but quick decision. I was taught that to stand up for justice, you must stand up out loud.

Adding my name also deals with the issue of ‘passing’. I have passed throughout my life. I am an Aryan of the type Hitler claimed. I am as white and fair as they come. I look heterosexual, if there is such a look, but certainly the presence of a husband helps the case. I am slenderish, menopause and cancer treatments rounding me out more than a bit. I have lived a life of privilege, and even within the sour luck of being diagnosed with metastatic disease, I have managed to work a tough system to gain access to Disability and Medicare – two fantastic programs denied so many because of the waiting periods and reduced income.

I have lived a blessed life.

Standing up for a just society sometimes means that I have to go outside my comfort zone and declare my privilege. I don’t look disabled. I don’t even look sick most of the time and when I am sick, it is invariably because of the treatment. You mainly feel cancer when you are dying. I am not dying right now. I am just terminally ill. There is a big difference for some of us.

I stand up for every person confined more dramatically by his or her disability, vomiting in a bowl, restricted to an institution, or machinery. There are so many faces of disability including the many that don’t qualify because they don’t know to try or they fear the stereotyping that this flyer displays. The flyer says disabled = slackers, the ruin of our democracy.

I share a concern over our democracy but more over how every day whistleblowers are criminalized versus valued, and my list goes on.

We have a lot of disabled people in this country. By some accounts it is a growing number, and perhaps, a growing issue. A dialogue about disability is probably overdue but these flyers should not lead the debate. They could if we were to stay silent. And furthermore, of course, we can find slackers in our bunch. They are there by the pound on Wall Street and in every other layer of society. Let’s not find the 1 case in 10,000 to make a dishonest storyline work.

Disabled is a label few would choose – to be put ‘out of action’. You only need to hang with some disabled to see a lot of action but it may be different action. Some of us blend in well, others are quite obvious, and for both categories the onus is hard – proving you are normal versus taking on the pity/compassion of others. Adding in the label of slackers’ is not just wrong, it is too much because we are a group of people who wish to not have so many barriers to get through before resting.

As a currently able-bodied disabled person, I share this great cartoon and caption. I hope I look great but believe me there is a lot of effort to pass for today. And I am never sure about tomorrow.

Warmly, marcy

Updates

Thanks for bearing with me during the very hard months of August and September. I must say that my October, which kicked off with surgery, has been great! Being back in the embrace of treatment allows me to decide that my cancer is being disappeared. My next internal scan could have been as early as now but it is now scheduled for late December/early January and that thrills me. My costume for Halloween will be that of a woman without cancer. (Oddly enough, that looks just like me! Note photo above where both Holly and I are in costume.)

Updates:

Melting Matilda, my remaining tumor being named Matilda, (to the tune of Waltzing Matilda) is my current theme song.

My extracted tumor qualified for UPenn by having more than 100 million cells. It took a full year to get to this place! The next steps start in January with the scan and then a trip to Philly (anyone have frequent flyer miles they are desperate to get rid of?) I would sign paperwork that day *if* my cancer is stable and shrunk and I pass other modest tests. Then two weeks later I would be back for a rather invasive process that harvests dendritic cells from my white cells through a dialysis like machine to allow final production of the Marcy Westerling Vaccine. Two weeks to a month later I am back for the first vaccine treatment! I would have a minimum of 5 trips to Philadelphia so you can see why the donated miles will help. I am also checking out free rides in corporate jets for cancer patients. (I know – too funny.)

My current chemo regime is weekly and low impact but there are also unknowns as I am early in the process and a second drug should get added in next week. Will I lose my hair? Place your bet – half the providers say yes, half say no.

My transition from Kaiser to OHSU should happen this week. Honestly, I still do not know if it will happen. Tuesday or Wednesday I will make the final call to see if the incredibly cumbersome process of getting accepted by a prescription drug plan is complete. (For some reason they could not check the right box that allows an under 65 year old to transition plans in their entry window. Medicare can inform me that they messed up the submitted form but since medicare cant talk to them or vice versa – dont ask me why – being right has little value. So I reapply and again they dont check the right box. Really! Since I have a November 1st intake appointment at my new provider and need chemo election day a resolution happens this week be it Kaiser or OHSU. No call today so I am hoping that they finally found and checked the right little box.

Many of you have been very generous with care packages of late. You got me through a hard time. Now you can save them for the next hard moment of testing. I truly pray that after 15 months of recurrence treatment w.mainly bad news we get a little break in the clouds – disease reduction and clearance for the Hail Mary pass to kick off 2013! (And decent election results….)

And lastly, for those in driving distance to Portland I am doing a reading at a local coffeehouse on Thursday, November 15th from 6:30-7:00.

Marcy Westerling will read from her works on Livingly Dying, a phrase borrowed from the late Christopher Hitchens.

While the content may not seem like date night material, it will be an honest chance to walk with one woman as she faces a terminal cancer diagnosis – including the positives of having a husband and community that walk every step with her.  Cancer is epidemic and dying is a given for all who enter this world.  Why not look behind the curtain for 30 minutes?

They have seating for 50 so please spread the word!

Rain or Shine Coffee House is a bright, cozy space at the foot of Mt. Tabor. 5941 SE Division St -
Portland, OR 97206

Off to More Surgery & Trials – Hi Ho

It’s been a roller coaster few weeks.  First my ct scan came back with new signs of disease progression on August 14th.  I have had a year of these dour ct scans now but each additional period of disease growth has worse implications.  My oncologist closed our August meeting by recommending that we pursue our top choice (and only choice) clinical trial at UPenn for a vaccine made from my own cells.  We had been working on qualifying me for this since last November but it is a Phase 1 trial (riskier and thus harder to get into but you are also guaranteed the treatment being tested.)  And surgery is required.  We had been turned down from surgery as an option last November based on little likelihood of gathering enough vaccine material and too much risk.  The current thinking is that you do not do repeat surgery on patients like me who recurred fast and have multiple cancer sites.  Anecdotally, all the women I know who have significantly outlived their prognosis have been multiply de-bulked (eg surgery), many over 5 times.  I was all in favor of surgery under any terms.  What we did not expect was our surgeon also to agree to the surgery that he denied in November.  He said that a tumor was now ‘easily harvestable’ and of clear size to meet the study criteria.  He was also painfully clear that he would do no other cancer clean up while inside because of the current wisdom that it is more risky then productive.  But Surgeon Cappuchini, like my oncologist Dr Mashru, agreed that at this point in time proceeding towards this clinical trial made best sense.

Wow – I was suddenly approved for surgery!  I was quite happy (despite Mike having serious doubts.)

But the devil was in the details. A team needed to be lined up to handle the removed live tumor to then head to UPenn for assessment as I continued with next steps for qualifying for their vaccine trial.  In order to get a complicated, fragile kit delivered to Kaiser many people needed to sign off and each one of them balked and sent out alerts.  Who was this to be billed to?  (Which Kaiser research graciously agreed to cover.) Who was responsible?  By then too many people were involved making liability a new issue.  As people needed to sign off formally they were reluctant to be seen as going against current surgical wisdom (no surgery just to qualify me for a trail – regardless that that surgery would also remove my largest and least responsive to chemo tumor.) Everyone said ‘don’t ask me to sign off, ask him’ until we were stuck in an endless loop – a week plus of this.

No one messed up.  Everyone did their job.  Everyone stuck to the letter of the current rules.  Alas, where did that leave me – the fucking patient who is not always served well by these rules.  Only they are protected from liability.  I am stage iv recurrent ovarian cancer.  The only accepted medical option for me is chemotherapy.  I am now medically labeled a ‘chemo failure’.  There are other chemos to try and I will but in 2 1/2 years my body has shown an incredible ability to nurture cancer while on chemotherapy. This is why women like me do not survive 5 years.

I would prefer a medical system with some waivers that allow informed patients to proceed.  I have spent nine months understanding why the clinical trial at UPenn is my best current hope.  My medical team agreed after a year of trying other options.  I am not trying to waste precious funds or resources.  By participating in trails I use my body as a foil for other women while hoping to buy time for myself.  Alas, this route pursued with tremendous hours, heart and research was denied me yesterday morning.  It seemed final.  We were done pushing.  And then, a wacky phone call came in to set me up for surgery next Tuesday, September 18th.  The surgeon had chosen to take on liability.  I have cursed this surgeon many a time for his gruff bedside manner in which he overly details why I am the rare woman he cannot save.  I have heard him deliver this 20 minute spiel three times now.  It is a bummer to listen to.  But he signed off on the surgery that we had finally hit a dead end on.  Thank you, Dr Fabio Cappuchini.

I have been off chemo for more then a month to allow my body a break, time to get a tooth extracted and now this abdominal surgery. Surgery should happen next Tuesday. We wont know until after surgery how involved it ends up being.  They will start laproscopically (blowing my belly up to the size of a woman carrying full term triplets) but they believe that they will probably have to convert to an abdominal open due to the positioning (deep inside) of the target tumor and its size.  The abdominal open will require more time in the hospital and complete rest but either option keeps me needing to recover much of the next month but hopefully I will return to my new chemo regime of weekly taxol plus avistan by late September.

It’s been a messy, stressful month.  To top it off my letter welcoming to Medicare got ‘lost’ and I officially started September 1st when I had understood it as October 1st – this matters a great deal when you are negotiating tricky surgery. And looking at needing to close out your 25 year health care through Kaiser Permanente (a secret) and navigate the new options via Medicare and pulling together a brand new team….maybe that fun saga will get detailed another time.

Throughout this month an incredible and expanded team of volunteers were tasked in working groups to assist with different levels of negotiations.  A shout out to each and every one of you.

The amazing result is that after 9 months of trying to position me for the best best clinical trial nationally if not internationally I am having surgery to move me forward in to acceptance at the UPenn research scene.  This is less a magic wand then a hail mary pass. But I truly believe that as we now try to get me past the very dicey 5 year survival mark (having past the 90% chance that I would not make it two years!), we have just inched me to a position of actual confidence in the possibility that we will have a big old 5 year survival party in April of 2015.  You, of course, are invited!  Thanks for cheering me on.  much love, marcy

Another Failed Chemo – Goodbye Doxil

Just a quick update….the burning is done.  After completing 4 of the 6-8 intended rounds of doxil I will get no more.  My burns were too severe (3rd degree) and the drug not effective enough.  Alas.

I am to start taxol on a weekly schedule and continue with avistan.  Taxol (in combination with carbo-platnum that I am now allergic to) is a common starter treatment for many cancers.  It’s what causes the bald head although I might bypass balding and instead face more hair thinning with the lower dose infusions.

In the meantime, I am urged to seek out a clinical trail by my oncologist.  I might prefer he do that but kaiser has strengths and weaknesses.  Sometime this Fall, presumably October but I am trying to get someone to confirm that, I start medicare (2 years 5 months after being diagnosed with a ‘catastrophic illness’.)  I had hoped to stay with Kaiser.  One downside of Kaiser is that it is not insurance – it is health care (what a concept) but they only pay for their health care.  They have been most generous with me but that does not include off site clinical trails.  And the way most clinical trials work is they provide the magic drug (or placebo) but your insurance covers the simultaneous delivery of whatever is the standard of care drug(s).  Picking up the cost of your own standard of care treatments is not doable.

So, that means that as I opt in to medicare I either need to ditch kaiser so that i can better access clinical trials or, modest good news from today, I could opt to stay with kaiser once on medicare and medicare would pay 75 – 80% vs 100% towards clinical trials.  So, maybe that is doable….?  (Oh for a single payer system that would allow me to focus on being sick – although barring that, kudos do go to both Kaiser and Medicare.)

In the meantime, a few of us are traveling to Seattle in early September for the every other year international conference on ovarian cancer – maybe a door will open there. It’s all researchers presenting to their peers but they allow patients to attend for free.  Very cool.

I arrive to the Seattle conference as a chemo failure.  The list of chemos that dont work for me is mounting. My cancer grows.  Now would be a good time for a door to open.  I am concerned to leave doxil, a drug I had pinned my hopes on, but I am pleased to stop being burned alive.  And how I will cope with weekly taxol we will know soon enough.

Thanks for all your interest, compassion and support.  xo marcy