Tuesday, May 21, 2013

I Live to Write; I Write to Live

Lisa Zamosky published an article on May 13, 2013 online about blogs by medical patients. I am pleased that she featured this blog in the article. The article discusses the benefits of writing such blogs for those being treated  for illnesses.

My blog, as you may have noticed, tries to inform on issues as well as discuss my own dealings with cancer.  Lisa captured my goal for this blog as follows:

Heim wishes to provide others with information they can use to get the treatment or benefits they need. "I actually got into it to try and get people interested in the drug shortage issue, because it was dramatically affecting ovarian cancer patients," she said.
Although the topics she writes about vary, Heim said her main goal in writing the blog is to create a space where people can gain links to community resources, understand when they qualify for Social Security benefits, and learn how to navigate Medicare and Medicaid, among other things. "Where do you find community services that can help you fill out these forms? Where can you go to get community mental health services?," Heim asked as examples. Answers to those types of questions are what Heim, who works as a corporate lawyer, would most like to provide her readers.
I have not done the articles on links to community services here yet, although I hope to do more of  more of that.  I have begun compiling information by others about these issues which you can find at my new website www.helpkeepasisteralive.com.  Please visit the site and leave messages about what you find helpful or what else you would like to see.

I also post frequently on my Facebook page about clinical trials and other items of interest for those dealing with ovarian or other cancers. It is a public page so check it out, like it, share it and otherwise promote it (if you would be so kind).  www.facebook.com/helpkeepasisteralive



Wednesday, May 8, 2013

Avastin Prices Vary Vastly- Caveat Emptor

When I recurred last year, my doctor suggested that, instead of trying carboplatin with Lipodox, I go on a clinical trial where I was guaranteed to get Avastin, which he considered a good treatment option. ( I have written about my trials with the experimental drug in that clinical trial here).  He said that the data on Avastin for achieving remission for recurrent ovarian cancer were quite good even though the drug had a bad reputation due to some infrequent but very serious side effects.  The other problem with Avastin was that insurance many times did not pay for it so a clinical trial would be a good alternative.  I recently talked to Lisa Zamosky about this issue which was discussed in an excellent LA Times article about approaches to paying for expensive medications.

I mentioned for the article that I was told that Cedars charged $25,000 a dose of Avastin.  I was getting a dose every two weeks so at that price, the cost of Avastin treatment alone would be  $650,000/year.  Cedars would not confirm this charge for the LA Times.  This amount seems quite high compared with the amount being charged for Avastin in Britain to the NHS, which,despite the lower price tag,  recently was told twice by its cost cutting advisor (NICE) that the efficacy of Avastin in improving overall survival did not justify its cost for metastatic recurrent ovarian cancer.

From WebMd.com

Apparently, however, the cost of Avastin for the patient in the United States, like the cost of procedures in hospitals (a hot topic in the news  today-- see here, here and here) varies quite a bit from hospital to hospital. In a nice piece of investigative journalism published on September 22, 2012 , the Charlotte Observer and The News & Observer of Raleigh in North Carolina found:
Large nonprofit hospitals in North Carolina are dramatically inflating prices on chemotherapy drugs at a time when they are cornering more of the market on cancer care. . .The newspapers found hospitals are routinely marking up prices on cancer drugs by two to 10 times over cost. Some markups are far higher.
In particular, these newspapers produced a chart on Avastin showing a wide discrepancy in prices paid at different hospitals.  The chart is based on data from Medicare and Medicaid, rather than the hospitals themselves.  As one hospital said, "You requested a list of drugs and what we pay vs. our cost vs. charges, but we are under contract with our suppliers to not disclose that information."

Read more here: http://www.charlotteobserver.com/2012/09/22/3549693/statement-from-novant-health.html#storylink=cpy

Why are the prices so disparate? Duke University charges close to what my hospital, also a teaching or university hospital, allegedly charges for Avastin.  But NC Baptist charges about a third of the price.  One hospital explains the differences on the mix of government payments (i.e underpayments) vs. insurance payments. Another claims that its higher prices are due to "higher volumes of uninsured patients and provid[ing] more sophisticated services, such as clinical trials."

The hospital trade association, NC Hospital Association, blames the complexity of cancer treatment and "resource consumption" for the high prices:
Resource consumption drives cancer drug prices in hospitals. Medicines that treat cancer are toxic, dangerous chemicals that demand the highest levels of trained personnel, specialized equipment and facilities. The resources hospitals must devote toward making cancer care safe for patients and staff far exceed those required for most other medications. Adding these necessary safety elements adds to the cost of administering cancer drugs. Hospital pharmacists are very heavily involved in the delivery of cancer medicines. Pharmacists spend more time preparing cancer drugs for administration than most other medicines used in hospitals. The higher charges for cancer medications reflect the higher hospital costs.
Presumably some of these hospitals have higher demands on resource consumption than others. An article on disparities in charges  medical procedures in the New York Times today (May 8, 2013) reported Keck Hospital of the University of Southern California's resource consumption rationale for such higher prices: " “Academic medical centers have a higher cost structure, and higher acuity patients who suffer from many health complications,” the hospital said."  However, the NY Times article disputes this explanation:
The data showing the range of hospital bills does not explain why one hospital charges significantly more for a procedure than another one. And Medicare does pay slightly higher treatment rates to certain hospitals — like teaching facilities or hospitals in areas with high labor costs.
Again, the lack of transparency of costs and charges makes it difficult to understand this disparity.  Hopefully these articles on drug charges and procedure charges will raise awareness in the public to demand more transparency or to find facilities that charge less.  

Saturday, March 9, 2013

The Thing I Carry

This week has been an interesting confluence of events that have caused me to be more blue than usual and, if possible, more contemplative.  I just finished reading The End of Your Life Book Club which is a son's remembrance of the last two years of his mother's life during which they read and discussed a number of books together (as in a personal book club) mostly while she was getting chemotherapy.  I also have a deadline to outline my goals for work-- what I hope to accomplish in the next year so I can be evaluated for how well I have achieved those goals.   While simultaneously thinking about death and the future, I have had a sore throat and headache for most of the week.  And I have been reading about and discussing Lean In,  Sheryl Sandberg's upcoming book encouraging women to achieve more in the workplace by speaking up, working harder and fitting corporate expectations.  One of those corporate expectations for women, I am sorry to say, is to never show your feelings in the workplace.

As I suspect most people do with late stage cancer, I carry with me a psychic brick of sadness-cum-anxiety that I try to keep hidden.  The brick can be heavier at some times than others, such as when CT scans or infusions are coming up.  When I am engrossed in my work and other parts of my life, I sometimes forget about the brick but it does not take much for its weight to be felt.  This week the brick was oh so heavy and not as easy to conceal as when I told several people that my goals for the work year are to stay alive and continue being able to work.   HR and management want to hear something quite different such as "improve department communication by starting a newsletter" and "cut outside counsel bills by 5-10%".  Somehow those types of goals are hard to fathom when you are identifying with the story of a son watching his mother die of cancer.

Given that I already have this big brick of emotion to hide, I am frustrated by the belief that it is inappropriate to get angry at work, particularly given that the expectation is applied to women more stringently than it is applied to men.  Male executives can have temper tantrums without affecting their success whatsoever.   But if you are a woman, watch out. You still have to be better, stronger, and calmer than everyone.  No emotion please, we're executives.  Female executives.

For the most part, I enjoy my work and I want to plan for the future at my job with the expectation that I will be able to take on new responsibilities and make a difference.  Like the mother in  the End of Your Life Book Club I plan to keep doing and living until I live no more.  I would just appreciate if someone would make this brick a little lighter.




Saturday, March 2, 2013

NOT The End of My Life Blog


When I started this blog,  I was obsessed with the drug shortages, particularly the absence of Doxil, a treatment for ovarian and other cancers, in the marketplace.  Drug shortages still exist but luckily the Doxil shortage has abated.  The FDA recently  approved a generic Doxil by the same manufacturer of Lipodox, which was imported starting in February of 2012  as a substitute for Doxil.  The generic Doxil manufactured by Sun Pharma is somehow slightly different from Lipodox, which seemed to work and cause the same side effects as Doxil.  Johnson & Johnson's monopoly over Doxil has ended just as they got some small amounts of Doxil back in the marketplace at the end of 2012.  That Doxil is still being manufactured in part by Ben Venue Laboratories, which entered into a consent decree with the FDA over its horrendous quality control problems.  The FDA exempted Doxil from the Ben Venue consent decree because of the shortages, but at the same time continued to allow the importation and use of Lipodox to meet demand for the drug.

I lost two friends last year who were unable to get Doxil during the shortages.  Whether the absence of Doxil caused their demise is not known.  By the time they got Doxil it did not work to stop the progress of their disease, but perhaps that would have happened anyway.   I miss them.  Our friendships developed as a result of the chemo shortages, and I resent that those friendships did not last longer due to this horrible disease of ovarian cancer.

What should I do with this blog now?  I have found myself still agitated by the pharmaceutical industry and the business of cancer treatment.  But as I continue to deal with my own disease, I also find myself backing away a bit from ovarian cancer advocacy in order to maintain my sanity.  My hat is off to those who fight cancer and work full time in cancer advocacy. To keep going,  I need the break from the despair of loss - -- of life, function, dreams, a long future.  I find myself less motivated to do the research and writing I did in 2011 and 2012 on drug shortages and ovarian cancer although I try to share information I find interesting (and pictures) on my Facebook page.

I still work full time at the job I have had for almost 20 years -- a motion picture studio lawyer.  I get an infusion of Avastin every two weeks and right now the tumors are shrinking.  In my spare time, I spend time with my family, particularly my young grandchildren that live with me,  and I read voraciously.  (Truth told, I also sleep a lot!)

For a while I was thinking that reading was a cop-out and an avoidance of continuing to tackle with my writing some difficult issues.  But today I started The End Of  Your Life Book Club by Will Schable in which the author's mother and the author read and discuss books as she is being treated for stage 4 pancreatic cancer.  Early in the book the mother says "Reading isn't the opposite of doing. It's the opposite of dying."  I love this statement.  I now feel less guilty about spending so much time reading.

I have been mostly reading classics for about a year-- 23 in total, many of which are 800 + pages long.  I did not read classics in high school or college so it has been a treat to read books like Les Miserables, Middlemarch, Bleak House and Don Quixote (the first one I tackled).  There are still a few more I have on my list to read, including Brothers Karamazov, Tom Jones, Swann's Way and David Copperfield.  But I am branching out into history, having recently finished Robert Caro's Master of the Senate and Passage to Power.

I do plan to write more in this blog but I suspect the focus will be less advocacy and more eclectic.  If you have any subjects of interest in the cancer area please let me know.

Monday, January 28, 2013

On Vacation and Seeking Balance

I am writing from Sedona, Arizona where it has been raining pretty much nonstop for the past 4 days.  I don't mind.  I am feeling good.  Even in the rain, the beauty of nature and life shines through.  I am enjoying time with my husband, reading and taking treks out in the nasty weather.  Undoubtedly there is a metaphor here for living with cancer.

Sedona January 26, 2013 (taken with iPhone)

I passed my three year anniversary of cancer last month.  I was diagnosed right before Christmas in 2009.  Today I am still in the clinical trial described in earlier posts but only getting Avastin every two weeks instead of Avastin and the experimental drug.  I still feel the some of the consequences of the experimental drug.  My breathing is labored whenever I exert myself or spend too much time in hot water.  I have had the pleasure of visiting spas two weekends in a row but have learned that the hot tub is no longer my friend.  I cannot spend much time there without overheating and gasping for breath, even if I try to hydrate while in the tub. However, on balance, most of the side effects of the experimental drug have abated.  My life is fairly normal for someone undergoing regular chemotherapy.

The good news is that the disease is currently stable.  My blood tests have been at the same level for months and the scans show no growth of the tumors.  Except for dealing with the incredible inefficiencies and mistakes of a major teaching hospital every two weeks (a subject of a future blog),  I am doing well.

Yesterday I indulged in a Reiki attunement and session.  I am not much of a believer in anything spiritual or mystical but I do find some eastern notions of spirituality intriguing.  I can accept that there may well be a life force or energy that flows through us and some may be more sensitive to reading it. My Reiki practitioner, without knowing that I had ovarian cancer, spent a lot of time on my abdomen, which pleased me because I had set my intention to healing the cancer there.   She also said that she found me to be more in balance than most people she sees.  That surprised me in some ways but not in others.  I try to power through this life I now have and find that I hold my stress in my mouth (I clench my jaw) and arms.  But, I also feel that I am not as obsessed anymore with things I cannot control such as work or other people's behavior.  Having faced a major situation (cancer) I cannot really control,  I believe I have gained a perspective about what is and is not important.  Perhaps that is the balance the Reiki practitioner found.   It is definitely the balance that I want to have.


Thursday, November 1, 2012

September WAS Ovarian Cancer Awareness Month- Part 3

I went away over a month ago and never got back to updating this blog with my daily posts in September about ovarian cancer.  Here is week 3 of the posts.

September 15, 2012
A REVIEW There is no screening test for ovarian cancer. A pap smear is not a test for ovarian cancer. If a woman has several of these symptoms for more than two weeks: abdominal pains, feelings of bloating, problems with appetite, urinary problems, and fatigue, she should run, not walk, to her doctor to check for ovarian cancer.

September 16, 2012
Once you know the symptoms of ovarian cancer, you must be your own advocate. Because ovarian cancer is a rare disease, many doctors and other medical professionals do not identify it as a cause of your symptoms. I know that well. I saw th
ree doctors over the course of nine months, my general practice doctor, my gynecologist and a GI specialist before the disease was identified. At that point it was in an advanced stage. Ray Romano talks about an ovarian cancer education program for medical professionals in this video.


September 17, 2012

Most ovarian patients recur. When it happens, the patient wants to know what her treatment options are. The choice of chemotherapy for recurrence depends upon response to first-line treatment, current symptoms, time elapsed from last treat
ment, and long term side-effects from previous chemotherapies.

Platinum-sensitive ovarian cancer —when a woman had a complete response, and the response lasted for at least six months, re-treatment with platinum-based chemotherapy is usually recommended. Suitable regimens include carboplatin with either a taxane (e.g Taxol), gemcitabine (Gemzar), or pegylated liposomal doxorubicin (Doxil) and possibly the addition of bevacizumab (Avastin). Also, repeat surgical treatment may be an option.

Platinum-resistant ovarian cancer — when a woman has persistent ovarian cancer despite first-line therapy with Taxol and a platinum agent, or if she relapses within six months of completing such therapy, she is considered to have “platinum-resistant” cancer. In this case, treatment with a single chemotherapy agent is recommended, including Doxil, topotecan (Hycamtin), Taxotere, oral etoposide, Gemzar, vinorelbine, ifosfamide, leucovorin-modulated 5-fluorouracil, Avastin, and tamoxifen.
Abridged from http://www.uptodate.com/contents/first-line-medical-treatment-of-epithelial-ovarian-cancer-beyond-the-basics.


September 18, 2012
In addition to the BRCA mutations, there is another hereditary basis for certain cancers, including ovarian and uterine cancer. Check out my friend's blog today.http://womenofteal.blogspot.com/2012/09/oc-awareness-month-18-lynch-syndrome.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+WomenOfTeal+%28Women+of+Teal%29

I think of treatment for recurrences as a bit like running the rapids as in this picture: scary, out of control, trying not to lose it and then, a period of calm at the end. Unfortunately you dont get the thrill of the ride.

September 19, 2012
A 15 year old named Jack Andraka won this year's Intel Science Fair with an early detection test for pancreatic cancer, which may also apply to ovarian cancer. The test detects presence of mesothelin antibodies whose presence have been found to be associated with ovarian cancer. In his own words: http://www.youtube.com/watch?v=pmVzs3-GNBc&t=2m27s
Here is a longer video of a TED Talent Search talk by Jack Andraka about his early cancer detection research:





















September 20, 2012

I WOULD LIKE A CLINICAL TRIAL WITH MY TEAL
source: Help Keep a Sister Alive
link: Full Article..

September 21, 2012

Earlier this month I posted some data that initial surgery for ovarian cancer patients improved survival. This video talks about an improvement to the typical debulking surgery by including removal of cancer cells in the upper abdominal region, which will yield even better outcomes for patients.


Wednesday, September 26, 2012

Postscript to Not Yeti! The Trial Goes On

I got the preliminary results from Monday's CT scan.  The tumors are still shrinking but my CA 125 is up a little from 50 to 57.  I am told the results of the CT scan "trump" the CA 125 levels.  So back I go on Friday to get another infusion of Avastin.  No more everolimus for me.  Good news all around!!


The side effects from the everolimus are subsiding, probably thanks to the steroids.  I am breathing better, have more energy and food is tasting better (a bit too much better, if truth be known). The mouth sores have gone away.  Hopefully my blood cholestorol levels and hemoglobin levels will be improved by the next blood draw in a month.

Thanks to everyone for the kind comments and support!