Papa & Isabel

~ I have received a few emails lately that you might be interested in.  The first came from a new website called Drugwatch.com.  I am reprinting their email below and will be adding the site to the Cancer Resources list.  I looked at the site.  I get the impression that they are still adding to their listing.  I entered a number of cancer-related drugs and the search came up empty.  On the other hand, when I typed in clarithromycin, the antibiotic I am on, fairly complete information was listed.  This included an understandable (not too technical) explanation of the drug’s use and the way it works on the body.  There is a list of common interactions with other medications, a standard dosage, and recall or “black box” warnings that are not always so accessible.  An second tab lists an extensive list of side effects, things to avoid when taking the drug, and a some questions you might want to ask your doctor.  In all I think the site serves as an excellent adjunct to your personal approach to your cancer.  Since it is written in clear, understandable language, it can serve as a springboard to discuss any concerns with your nurses, physician, and pharmacist.  (Pharmacists are excellent sources of information that are probably underutilized.  Besides, I have found that they seem enjoy the opportunity to get out of their dispensing routine and do some interacting and teaching with the public.)

I am the Social Media Coordinator for DrugWatch.com . Lately I have been reaching out to cancer & drug education web sites (blogs) in efforts of getting our link resource added to your web site. We also have a team of writers dedicated to providing free, unique content for your website.

Drugwatch.com has achieved HON certification and is dedicated to educating the public about the details of prescription and over the counter medications by aiding patients and consumers about any associated side effects with drugs used to treat several conditions. It is our pledge to never be affiliated with any drug or pharmaceutical company. If you would be interested in creating consumer and patient awareness, please let me know. With your help we can keep the public informed about important drug information.       ~ Drug Information, Side Effects & Interactions | Drugwatch.com

~ A few weeks back in our review of breast cancer sites, we met Sisters Network, an organization serving African-American women dealing with breast cancer.  Their annual conference is coming up the second weekend in April in Houston.  You can register online at Sisters Network Inc. : A National African American Breast Cancer Survivorship Organization.

~ Speaking of conferences, Tish and I are traveling to Boston next month to attend a symposium by BMT Infonet, the “Blood and Marrow Transplant Information Network”.  The fact that we have 3 month-old twin granddaughters in Boston has nothing to do with it.  Of course, it does but we did attend one of their symposiums and found it quite valuable.  So if you have had a transplant or anticipate the possibility in your treatment future, this would be an excellent experience to sign up for.  BMT InfoNet Homepage

~ I just saw an interesting movie (DVD) last week that I plan to review.  It is called I’ve Loved You So Long.  I thought it was excellent and plan to write a review later.  The cancer theme is peripheral to the main theme of a woman dealing with tragedy.  The performance by Kristen Scott Thomas (The English Patient) is extraordinary.  The film won a number of awards last year.  The movie is in the French language with subtitles.  Order from Amazon: I’ve Loved You So Long

~ A book I am reading and recommend to your attention is The Year of Magical Thinking by one of America’s iconic writers, Joan Didion.  The book covers her year of recovery and introspection after losing her husband – their marriage, the dimensions of a loving relationship, and the meaning of death.  I will try to write a review of this book later. The Year of Magical Thinking

~ Finally this miscellaneous post gives me the opportunity to do some grandparent bragging.  Four year old Sophia had her adenoids out and ear drains put in last week, a condition that was affecting not only her hearing but her speech development.  Afterward her daddy asked her if she could hear better now.  Sophie replied “Yes, can you understand me better now?”  Her sister Isabel and I spent the day together.  We were playing at the computer and made the photo above.  All for now.  Take care, Dennis

cancer

Castle in Cashell

Clinic Visit

Today I had my clinic appointment for transplant follow-up, labs, and, today, a cortisone stimulation test.  I knew the appointment was approaching and I acknowledged to myself yesterday that I was not anxious about it as I usually am.  By yesterday evening my throat was starting to hurt and a head cold seemed to reemerge. Then I started thinking about the successions of flu episodes,  sinus infections, sore throats, and ear aches I have been having over the last months.

Every leukemia patient I have ever known, and I have known hundreds, related to me this very same history – lingering cold and flu symptoms – prior to their diagnosis.  Of course I knew that the overwhelming probability is that my still inefficient, immature immune system was to blame.  But I also that my relapse, if and when it does occur, might resemble this same pattern of recurrent infection.  But my counts cam back okay – normal albeit low-normal, but normal just the same.  So my anxiety has subsided, at least for another three months (a record by the way, if I can keep it).

AMAS Test

I received another odd email inquiry.  The writer asked “it is possible … to get a post about an innovative aid in early cancer detection and follow-up: the AMAS test.

Even though the test has existed for over a decade, many people don’t know about it. I would like to start spreading the word around.

The principle is simple: the test measures the level of a specific antibody (the Anti-Malignin Antibody) in a blood sample. The antibody would be elevated regardless of the location and cell type of the malignancy. It is used by many doctors to increase the accuracy of other standard tests (MRI, PSA, CA125, or mammograms); and as a follow-up tool for recurrences.

Many studies have been done over the last 20 years supporting the theory. The test had been proven 95% accurate (see publications for details of the studies).

Odd, I thought, that I, being a cancer nurse since 1987, had never heard of this.  Sounds too good to be true!  So I googled the term.  Not a lot came back, at least from the medical literature.  Proponents are few and far between.  Such a test would indeed be a boon to the cancer community, the professional community included.  If true, the discoverers would had long ago been offered millions of dollars for the rights.  Unfortunately when exposed to scientific scrutiny and rigor, the claims do not hold up, not for the test, not for the existence of the “anti-maliginin anitbody.”

So from what I read this is the only post I can responsibly publish.  And, no way, can I recommend this test to readers.

Snap Shots

I have been working on the blogroll.  If you look at the Brain Cancer” section, you will see that I have added more information about the specific diagnosis, year of diagnosis, country the blog is written from (if not the US), whether the patient is a child, and whether the blog is currently inactive.  I always look at blogrolls seeking new entries for “Cancer Blogs. I look as well for interesting features.  When looking at one blogroll, I noticed that by merely hovering the cursor over the blog name, a window popped up showing the recent entries.  A cool feature, I thought.

So I just installed this nice little tool on my site called Snap Shots that enhances links with visual previews of the destination site, interactive excerpts of Wikipedia articles, MySpace profiles, IMDb profiles and Amazon products, display inline videos, RSS, MP3s,  and photos,

Sometimes Snap Shots bring you the information you need, without your having to leave the site, while other times it lets you “look ahead,” before deciding if you want to follow a link or not.

Should you decide this is not for you, just click the Options icon in the upper right corner of the Snap Shot and opt-out.

I’ll be interested in your feedback on this.

cancer

Looking up ...

Welcome to the new face of Being Cancer!  Well, it’s not as complete as I had planned – I am still struggling to place a photo image in the “header” or top section of every blog page.  But if you look closely at the same header, you will notice some changes.  The 2010 iteration of this website includes a shift in wording in the blog title.  Being Cancer has evolved into Being Cancer Network.  The word networking in the subtitle has been dropped, leaving People Transformed by Cancer.

Why the change?  I want this year’s focus to be more on our blogging community than on me.  I want to target the idea of cancer community more directly, emphasizing sharing ideas, posts, readership and enabling more discussion and dialogue.  My own health status remains solidly in remission – not so much to write about there.  Though I naturally cringe at saying out loud (bad luck?) that I am doing well as far as cancer goes, I do need to say it.  I am down to transplant clinic visits only every three months.  And, except for the occasional short hospitalization, I only have to deal with a persistent proclivity to viral infections.

I spent this weekend continuing in my naive struggle to learn programming languages – HTML, CSS, and PHP – in order to have more control over the look and functions of the website.  I did manage to successfully add some “widgets” to my left sidebar.  First is the colorful “Translate” widget that enables the Global Translator plugin to translate posts into a variety of languages.  It is always fun to view my familiar home page in Dutch, German, or Swedish.  I also expanded the “Categories” widget to include the number of posts in each category.

Next is a new box called Top Ten Commentators. This feature ranks folks who have offered comment based on the number of comments.  Hopefully it might encourage more participation.  The names on the list are hotlinks back to those blogs.  There is also a new countdown widget, displaying how long it has been since my stem cell transplant.  This might offer hope and optimism to those considering a transplant.  In the Askimet box, you can see how busy the spammers have been.  We are now at 31,000 legitimate visits.  I want to add a visit counter to the page in the future.  Finally, just for fun, you can see how many people are on the website at any given time.  This is supposed to include a world map page but I haven’t gotten it to work.

I have added some navigation features to the Cancer Resources page and hope to do the same with Book Club, Book List, and Reviews. The next thing I have planned is a different publishing schedule to emphasize the new community focus.  I plan five posts a week.  Monday will remain devoted to cancer books, either a review or the book club.  Tuesday and Thursday will feature Guest Posts.  As much as anything, this feature seems to strengthen the community.  I don’t want readers to miss out on great writing so I am doubling the number of weekly guest offerings.  Wednesday will center on a descriptive review of a selected cancer resource.  Friday will be either cancer news, a healthcare reform topic, or another cancer resource review.  I will continue to write reflections and articles occasionally.

Hopefully you have noticed the new Honor Roll page.  This is an Honor Roll for Excellence in Cancer Writing. Again this is designed to highlight the great writing and wisdom to be found in personal cancer blogs.  Cancer Blogs remains our most popular and unique offering. I will be adding to and expanding it, including descriptive modifiers on diagnosis, child survivors, inactivity, and other relevant bits.  I will be separating out Hodgkin’s bloggers as a distinct group from the other (non-Hodgkin) lymphoma survivors.

Please, please let me know about any new blogs you have found, any new cancer resources that you use, and any links that no longer work.  We are all in this together. We are the Being Cancer Network.

cancer

Dublin Pub

~ Chemotherapy helps improve breast cancer survival in post-menopausal women, adding to a long-standing debate about how best to treat these women.                                                       A gene-based test called Oncotype DX made by Genomic Health Inc may help identify a small group of women who are not likely to benefit from chemotherapy, a second study found.                              The main study proves that adding chemotherapy to treatment with the estrogen-blocking drug tamoxifen can help prevent cancer from coming back in women with estrogen-receptor positive breast cancers, the most common kind in which a hormone is driving the cancer.                            “We have a survival benefit that lasts for a very long time … for women who got both modalities of treatment versus women who just got tamoxifen,” said Dr. Kathy Albain of Loyola University Health System in Maywood, Illinois.  “It is considered a landmark study in the clinical trials literature because it is the only one really demonstrating the survival advantage of chemotherapy added to tamoxifen,” Albain said in a telephone interview.  “Up until this trial, studies adding common chemotherapy drugs to tamoxifen or tamoxifen alone were essentially negative.”

For the study, the team followed nearly 1,500 post-menopausal women with estrogen-receptor positive breast cancers that had spread to at least one lymph node.                                                      Some of the women got both tamoxifen and a chemotherapy drug known as anthracycline, and some got tamoxifen alone.  The team found that the women who got the chemotherapy were 24 percent less likely to have their cancer come back.   They were also 17 percent less likely to die during the 10-year study period, but this finding was just shy of meeting statistical significance.                        The team also found that giving tamoxifen after chemotherapy ended instead of during chemotherapy improved a woman’s survival chances.

In a second study led by Albain, published in the journal Lancet Oncology, the team evaluated whether the Oncotype DX test can predict which women would benefit from chemotherapy.  The test examines 21 genes from a tumor sample to see how active they are, and produces a score that predicts chemotherapy benefit. It is most commonly used in women with estrogen-fed tumors whose cancer has not spread to a lymph node.  But Albain’s study suggests it may also be useful in identifying women whose tumors had spread that would not benefit from chemotherapy.  -Reuters

~ Some women with very advanced breast cancer may have a new treatment option. A combination of two drugs that more precisely target tumors significantly extended the lives of women who had stopped responding to other medicines, doctors reported Friday.It was the first big test of combining Herceptin and Tykerb. In a study of 300 patients, women receiving both drugs lived nearly five months longer than those given Tykerb alone.                                                          Doctors hope for an even bigger benefit in women with less advanced disease, and were elated at this much improvement for very sick women who were facing certain death.

“We don’t see a lot that works in patients who have seen six prior therapies as they did in this trial, so that alone is exciting,” said Dr. Jennifer Litton, a breast cancer specialist at the University of Texas M. D. Anderson Cancer Center. The good results are in stark contrast to two other studies that found no survival advantage from Avastin, a $30,000-a-month drug whose approval for breast cancer patients was very controversial.

Considering Avastin’s potential side effects — blood clots in the lungs, poor wound healing, kidney problems — a survival benefit “would have made the cost of the drug less painful to take,” Litton said.

Herceptin and Tykerb aim at a protein called HER-2 that is made in abnormally large quantities in about one-fourth of all breast cancers. Herceptin blocks the protein on the cell’s surface; Tykerb does it inside the cell.

“It’s kind of like having a double brake on your tumor. If the first one fails, the second one does the job,” said the Dr. Kimberly Blackwell of Duke University.  She led the combo treatment study and has consulted for its sponsor, British-based GlaxoSmithKline PLC, which makes Tykerb, and for Genentech, which makes Herceptin and Avastin.

Women in the study had already received Herceptin alone or with various chemotherapy drugs and still were getting worse. They were randomly assigned to receive only Tykerb or both drugs, to see whether the combo might help Herceptin regain its effectiveness.

Median survival was analyzed after about three-fourths of the women had died — roughly two years after the study began. It was 61 weeks in the combo group versus 41 for those taking only Tykerb. That likely underestimates the combo’s true benefit because women on Tykerb alone were allowed to add Herceptin partway through the study if they continued to worsen, and many of them did, Blackwell said.

One woman on the combo in the study suffered a fatal blood clot. The only other common, serious side effect was diarrhea, which plagued 7 to 8 percent of each group. Herceptin costs about $10,000 a month; Tykerb, $5,000 to $6,000.

Dr. Eric Winer, breast cancer chief at the Dana-Farber Cancer Center in Boston, said several studies now show that Herceptin still helps women even when their cancers seem to be getting worse. “Herceptin is like a big roadblock on a superhighway. Eventually the cancer finds a way around it by taking an off ramp. But it’s much less efficient to take that off ramp, so Herceptin is still having some influence on that cancer,” said Winer, who, like Litton, has no financial ties to any drugmakers.     Not so for Avastin, which works by crimping a tumor’s blood supply. The federal Food and Drug Administration approved its use in women whose cancers had spread beyond the breast over the objections of FDA advisers who wanted more evidence of benefit for these patients.    - AP

Ireland – here we come.  At least I hope so.  We haven’t packed or done any other preparations.  But I have been working on the website, putting together journal posts and guest posts and storing them as drafts.  This way I can publish them ready-made from abroad.  I may post a quick Irish update or two just to let you know what’s happening.  I want to regain momentum in my writing.  Six weeks of various viral illnesses has made for unsteady progress for the blog and website.  I hope to take a lot of photos there though the forecast is for steady rain.  That means, among other more obvious things, pretty flat lighting for photos.

My email box has accumulated a number of pleas and requests to assist other bloggers and cancer-related enterprises.  I endorse none of these but merely pass them along to you as potential resources.

~ The “Journal” posts that you have been reading since the blog’s inception have been excerpted from my on-line publication Diary of an Illness. This was my original exposition of my battle with leukemia.  For the past seven years ther story has been hosted on the website of the Oncology Nursing Society.  They have recently revamped their website and the on-line journal is no longer available.  As with many changes there comes opportunity.  I am making plans to republish it in its entirety as a free on-line e-book with its own website.  Over the years many people have found it helpful.  So it will be my honor to offer it free to a wider audience.  Several colleges have used it as reading for various cources, including one entitled “The Biology of Cancer” at Mount Wachusett College.

~ Speaking of books, Donald Wilhelm, who descibes himself as a five-time cancer survivor, author and cancer advocate, asked me to mention his website www.thrivingwithcancer.com (Learn cancer experiences from 5-Time Cancer Survivor Donald Wilhelm.).    He is offering a free 5-day “video boot camp on cancer”.  There is an introductory video on the website.  Then, if you want to subscribe, you enter your name and email address.  For the next five days, he will email you inspirational video chapters.  Since I’m leaving on Saturday, I didn’t have time to subscribe.  After the five days, I don’t know if there’s an “angle”.  Donald has written a book “Thriving With Cancer” that is listed and reviewed on Amazon.  So if you like the videos, you may be presented with an opportunity to purchase a copy of the book.  Let us know what your experience was.

~ My post on “Little Things” was republished as a Guest Post on the above mentioned Oncology Nursing Society blog at RE:Connect

~ Some late reporting on our favorite “band” of musical gynecology surgeons, N.E.D. (“no evidence of disease”).  The band N.E.D. performed at the Inaugural GCAM Race to End Women’s Cancers that took place Sunday, November 8th, in D.C.  The race, organized by the Gynecologic Cancer Foundation (GCF), aims to raise awareness and funds for gynecologic cancers through a 5K, half-marathon and 1-mile walk.  N.E.D. has filmed a PSA about the race that can be viewed here:    YouTube – N.E.D. & The GCF Race to End Women’s Cancer As you know, the band’s debut EP, No Evidence of Disease, released in September to coincide with Gynecologic Cancer Awareness Month, benefits the N.E.D. Fund of the Gynecologic Cancer Foundation (GCF). Since its release, the album has been charting on Amazon’s best selling albums chart (peaking at number 235), and has been reviewed by likes of All Music Guide. The band and their EP have received support from MTV’s social change site, ThinkMTV where they were a  featured topic, and Lifetime Women’s Network, who throughout the month of September, featured their public service announcement pushing women to know the warning signs and get checked regularly for gynecologic cancers.

~ This just in: Hi, I’m Ricky Byers and I am a 2 time cancer survivor.  I wake up every morning with a true sense of accomplishment.  I just love life.  Knowing that you can beat cancer is truly a great feeling.  At the age of 33, I was diagnosed with Squamous Cell Carcinoma. Little did I know that I was about to fight the biggest fight of my life to date. During my 5 year fight against Laryngeal (Throat) cancer, my biggest inspiration came from the 7 time Tour De France winner, Lance Armstrong.  Reading Lance’s story and using all the tools that are available to all cancer patient’s on his website, was an absolute lifesaver for me. Knowing that it is possible to beat this and knowing that people like Lance have spent their lives raising money for research, cures and  helping cancer patient’s find information about their illness  is truly amazing!
The thing that I want most in life now is to help Lance in his fight for Cancer patient’s.  I may never have the opportunity to meet Lance in person, but I am determined to help him in this fight.
My passion has always been in racing.  I have raced for over 20 years in numerous types of automobile racing, but no race in my life will be more important than the race to the finish line for cancer.  I know that a lot of money and awareness can be raised for cancer research.  I know this disease can be fought.  I know that every family will one day be touched by this horrible illness and I want to do everything in my power to help get rid of it.My goal for 2010 is to be in the Arca Remax  Series or the Camping World Truck Series to raise money for cancer research and awareness. I want to partner with sponsors that share in my belief, that cancer can and should be a thing of the past.    Anyone interested can visit my website www.RickyByersRacing.com.
I look forward to being here at NASCAR Ranting and Raving and I hope you enjoy reading about my racing expereinces both on and off the track.

~ Also just in: Freedom can be yours — freedom from smoking, that is.  November is Lung Cancer Awareness Month — free yourself from smoking with a great resource from Beliefnet.com that offers the inspiration and support you need to stay the course. With clever quitting tactics and a network of ex-smokers to offer strength and motivation, explore Beliefnet’s “Freedom From Smoking” gallery for support to help you kick that bad habit.  Beliefnet’s Health Editor Holly Rossi can provide tips and inspiration for staying healthy in mind, body and spirit as you or someone your love takes that step toward cutting ties to smoking in exchange for a new, healthier life. The Journey to Freedom from Smoking – Beliefnet.com

~ New book coming to me for review:  Called Back, a memoir of the author’s (Mary Cappello’s) struggle with cancer and her long recovery, Alyson Books.

~ We’ve come a long way from the 1990s, when radical mastectomies were the primary treatment for breast cancer. Today most women who are diagnosed will survive the disease. Most advances in breast cancer treatment are the direct result of clinical trials, yet myths and confusion about research studies keep many people from participating in trials that could provide early diagnoses or potentially life-saving therapies.
BreastCancerTrials.org (Welcome – BreastCancerTrials.org) is the ONLY trial matching and breast cancer information resource EXCLUSIVELY dedicated to breast cancer. The free, non-profit website and customized trial matching service was founded by two breast cancer patients in partnership with the University of California, San Francisco (http://www.ucsf.edu). The site was designed from first-hand experience as an easy-to-use, one-stop solution for patients who are coping with their own dramatic health changes while trying to keep up with day-to-day life and, at the same time, learn about potential treatment options.

Washing the dogs

I am very busy this week promoting a new project that I hope will further unite and highlight our cancer blogging community.  This is very exciting.  Other bloggers I have contacted are excited as well.  I will be writing more about this in the coming weeks.

I just discovered that my Cancer Blog Links page is frozen.  I noticed a problem after I upgraded my Wordpress software.  The page data would not appear in “Visual” format, only in HTML.  This was hassle.  But I figured I could enter new data in HTML code.  This is just more tedious and takes longer.  However, when I tried to enter some new sites, the page was changed in the HTML view but changes were not reflected on the actual page that you see when you click on the tab.  I will go back to Wordpress support forums.  If any of you are techno-savy and have suggestions, please don’t hesitate.

I have some travel plans approaching.  I will have to figure out how to maintain the site from a distance.  Next week I am going to Las Vegas (first time) to speak to a group of people from the biotech company, Genzyme.  They are now the U.S.marketers of my miracle drug, Campath (alemtuzumab).

In a couple of weeks we are traveling to Boston to deliver baby presents from the shower we are hosting here in Indianapolis.  Nathan and Coppelia are expecting twin girls in December.  From there we are flying to Ireland for a week.  We have friends on sabbatical there and so have a place to stay.  I still had enough “miles” from my pre-cancer life to purchase a free ticket.  Hopefully, I will have some interesting posts and photos to share.

Healthcare Overhaul:

Fridays continue to be temporarily devoted to the healthcare debate.  I bring your attention again to the best and most complete resource I have found.  An online guide to following the health care legislation. – By Timothy Noah – Slate Magazine

As I have said before, healthcare reform should involve a lot more than just insurance reform.  In an article on CNN, however, we see how the current payer system imposes changes on how physisicans practice medicine, everything from the inefficiency of multiple, non-standardized forms to how payment for services vare paid for results in multiple visits to the physician’s offices.  How insurers meddle in your medical care – Sep. 24, 2009

On a lighter note, a move by a Canadian cancer organization to extend their appeal for breast health to a younger audience resulted in the racy ad “Save the Boobs”.  A controversy ensued.  To watch this video, one by Susan B Komen organization, and a lively discussion by a group of young women, click on Video – Breaking News Videos from CNN.com

The Wall Street Journal recently published a report suggesting that business leaders, traditionally allied with Republican platforms, are showing signs of breaking ranks.  Many business are supporting some form of healthcare reform because costs for them are just getting too out of control.  Overhaul Divides Business and Its Traditional GOP Allies – WSJ.com

Want some odea of how much money health insurance gianrts make?  Check out this NYT article: How Much Money Do Insurance Companies Make? A Primer – Economix Blog – NYTimes.com

Are prices charged by hospitals for ER services for the uninsured fair?  Look at this “60 Minutes” report:  Hospitals: Is the Price Right? – 60 Minutes – CBS News

Finally from NPR: What The ‘Gang Of Six’ Wants From Health Care Bill : NPR

Complicated enough for you?  It’s a big problem that demands a big solution.  Please educate yourself and contact your representatives in Congress (see “Healthcare Reform” tab for more resources).

cancer

I'm Listening

The viruses (or is it viri ?) are losing ground as I am steadily gaining it.  My body still feels like it would after the first spring weekend working in the garden.  But I spent a lot of time lying in bed thinking of all the projects I would like to get done on the website.  So today I am going to combine the twin Friday themes of cancer news with healthcare reform issues.  I have combed the major news and political outlets for information and opinion on the latest updates.

At CNN I found a pdf downloadable copy of the Baucus plan which was hoped to appeal to both Democrats and Republicans.  Health Care in America – Special Reports from CNN.com.  It runs almost 200 pages,  you might want to read instead the summary of the bill’s main points.  What’s in Baucus’ health care proposal? – CNN.com.  You can also find there a comparison of four proposed plans:  from Senator Baucus , the Senate HELP Committee, the House Tri-Committee, and the House GOP.  Health care proposal mandates coverage, drops public option – CNN.com
If all that reading does not appeal to you there is a video explanation of the public option by CNN”s Elizabeth Cohen.  Would ‘public’ health care insurance progam help you? – CNN.com

The Los Angeles Times has an interesting point-counterpoint op-ed on how the public option might affect the  private insurance industry.  Public option: a private insurer killer? — latimes.com

More on the Baucus Plan can be found from several columnists at Slate.com. John Dickerson talks about misdirected anger since  the plan accomplishes much of what was laid out in Pres. Obama’s speech.  A lot of the anger at Max Baucus should be directed at President Obama. – By John Dickerson – Slate Magazine Another article calls attention to the bill’s focus on the ‘young invincibles’.  How Sen. Max Baucus’ health care bill panders to the young. – By Timothy Noah – Slate Magazine

I know that a significant portion of the cancer blogging community is composed of young cancer survivors (presumed no longer ‘invincible’)   They and other might be interested in a new organization of  ‘young invincibles” who are committed to improving the healthcare situation among that age group.  Go to:  Young Invincibles: Campaign for Health Care Reform

** Political viewpoints aside the same website provides an excellent factual guide – An online guide to following the health care legislation. – By Timothy Noah – Slate Magazine.
The article details a long list of resources starting with the committees and their processes that proposals must pass through before arriving on the floors of Congress. It goes on to list major blogs related the to debate, major columnists, think tanks, news sites, academics, the main lobby groups, and seminal articles related to the debate.  This is an extensive list with links to the resources cited.  The most information in one place that I have found.

So read and consider, consider and decide, decide and take a stand.  Talk to your neighbors, talk to your friends, most importantly, talk to your Senators and Congressmen (contact information on this blog’s Healthcare Reform page).  And have a great weekend.

Take care, Dennis

Sadly I “discovered” two new (to me) cancer blogging communities this week during sessions building up the “Cancer Blogging Links” page.  The first is the neuroblastoma group, a childhood cancer which I at first placed under “Brain Cancer”.  One parent blogger corrected me just as I was coming across more and more of these blogs.  The blogrolls on these sites distinquish between “survivors” (those in remission). “warriors” (still fighting), and “angels” (those who have died).  Their stories would touch any of us even as we struggle with the beast ourselves.  Next week’s Guest Post will feature one of these heart-rending blogs (a good news story though).

The second group includes those marked by BCRA1 and BCRA2 gene mutations which predisposes carriers strongly towards developing breast cancer at a rate far exceeding the general population.  These women face the difficult decision of prophylactically having a double mastectomy, quite before any cancer diagnosis is made.  I am including these blogs under “Breast Cancer” with a BCRA notation.

Last evening Tish and I went to a kick-off meeting for the local Leukemia & Lymphoma Society’s annual Light the Night fundraiser.  The very informal affair always features a guest survivor as speaker.  This year it was a young man who told a story of having successfully fought testicular cancer.  A final meeting with his oncologist confirmed that he was in remission.  He and his young wife joyously returned home only to be called back to the clinic two days later to be informed that he now had CML, chronic myelogenous leukemia.  He has not been cured but has to look forward to a lifetime of taking the drug Gleevec.  So when I ran across this article on the drug, I knew it would be this week’s Cancer News post.

Finding Key To Cancer Drug Gleevec’s Limitations

ScienceDaily (Aug. 7, 2009) — University of Michigan researchers have developed an animal model that provides strong evidence why imatinib, marketed as Gleevec, helps patients with chronic myeloid leukemia survive longer, but does not keep the disease from returning if treatment ends

Leukemia-initiating cells are able to live below the drug’s radar and enable the disease to recur in most cases after treatment stops, the researchers report in the August issue of Cancer Cell.

The researchers already are using their findings to test combinations of imatinib and other drugs to find ways to sensitize the leukemia-initiating cells to imatinib and enhance its power.

Imatinib, now the standard first-line treatment for chronic myeloid leukemia or CML, has prolonged lives, but does not keep many patients from eventually moving into the disease’s later, more severe stages.

Until imatinib was introduced in 2001, people with CML faced a grim prognosis, with few surviving five years after diagnosis unless they received bone marrow transplants. Imatinib has reversed that prospect, allowing 95 percent of people with CML to survive five years.

Yet it soon became clear that the disease almost always returns without maintenance treatments of imatinib. Imatinib treatment cures the disease in at best 5 percent of cases. Maintenance treatments are a concern, because the drug can cause side effects such as extreme fatigue, nausea, diarrhea and muscle pain. These force 15 percent of cancer patients to stop taking imatinib; some then undergo bone marrow transplants, the only treatment known to cure CML.

Imatinib, one of several targeted cancer therapies developed in recent years, inhibits certain enzymes associated with mutated genes that are involved in CML. Cancer researchers have suspected – but have not known until now – that certain cells that set events in motion toward CML are able to resist the drug.

“The mouse model we have developed for CML allows us to identify, understand and target the tumorigenic cell,” says Theodora Ross, M.D., Ph.D., associate professor of internal medicine at U-M and senior author of the study. Developing a mouse model that closely reproduces the progression of human CML was a 10-year process.

CML is a slowly progressing disease in which too many of certain white blood cells are made in the bone marrow. It is also called chronic granulocytic leukemia or chronic myelogenous leukemia. An estimated 5,050 men and women will be diagnosed with chronic myeloid leukemia in 2009, and 470 will die of the disease, according to the National Cancer Institute.

Implications

Ross says that the study findings point to a new goal in CML treatment: to find ways to make imatinib specifically kill the leukemia-initiating cells that at present remain unaffected by the drug.

She and her team are currently testing several two-drug combinations using their mouse model. Imatinib is being combined either with interferon, rapamycin (also known as sirolimus), arsenic or GM-CSF (marketed as Neupogen). They hope to find combinations that will make the initiating cells more vulnerable to imatinib’s action. If successful in mice, the combined therapy eventually can be tested in people.

Other authors of the study include: Katherine I. Oravecz-Wilson, Steven T. Philips, and Ömer H. Yilmaz, co-first authors; Heather M. Ames, Lina Li, Brendan D. Crawford, Alice M. Gauvin, and Sean J. Morrison, Ph.D., all in the U-M Department of Internal Medicine; Peter C. Lucas, M.D., and Kajal Sitwala, M.D., Ph.D., U-M Department of Pathology; and James R. Downing, M.D., Department of Pathology, St Jude Children’s Research Hospital, Memphis, TN

Funding for the study came from the National Institutes of Health, the Leukemia & Lymphoma Society and the Burroughs Wellcome Fund.

A clinical trial is not currently open and will not likely happen for several years.

Citation: Cancer Cell, Vol. 16, Issue 2, Aug. 4, 2009

A Death Sentence Reexamined

When Jon Matthews was diagnosed with mesothelioma, a particularly deadly form of asbestos-caused lung cancer, his prognosis was dire: he was told not to expect to survive more than nine months. Still alive a year and a half later, Matthews decided to make a bet with his bookie, at 50–1 odds, that he would live past the 25-month median survival for people with his diagnosis. He won that bet in 2008. Last month he won a second, similar bet for more than $8,000, and went back to his bookie with a third wager: that he would survive until at least the middle of 2010.

Stories like this play to an archetypal, against-all-odds medical narrative, and stoke the imagination. But despite the recent media chatter about well-known people living with dire cancer diagnoses—such as Apple CEO Steve Jobs, Sen. Ted Kennedy, and actor Patrick Swayze—there has been little discussion of the science behind prognoses.

At its core, a prognosis, which means “to know beforehand,” is a prediction about how a disease will progress, and what impact different treatments will have on survival. The modern concept of a cancer prognosis is based on a simple premise: by knowing how a type of cancer has advanced in past patients, doctors are able to make predictions about the progression of the same disease in current patients.

In the first half of the 20th century, the collection of cancer data shifted from individual teams of surgeons to government agencies and other centralized organizations. Brenda Edwards, associate director of the Surveillance Research Program at the National Cancer Institute (NCI), says that the NCI has continuously collected cancer data from specific geographical regions of the country since 1973.

Every case of cancer diagnosed in the study areas, which currently cover 26 percent of the U.S. population, is anonymously reported to, and tracked by, the NCI cancer registry. From this information, statisticians are able to follow changing survival statistics over time, and the effectiveness of current and past treatments. They also provide oncologists with data for making prognoses. One of the limitations of this approach, says Edwards, is that gathering data takes time, and it’s possible for accurate prognoses to lag behind the newest developments in treating, or even diagnosing, cancer.

A prognosis is only as good as the data that go into it. Andrew Vickers, an associate attending research methodologist at Memorial Sloan-Kettering Cancer Center, cautions that “huge numbers of decisions in cancer medicine”—often including prognoses—”are based upon a single variable, your stage, which is a crude risk categorization.” Staging, which is primarily determined by the size and spread of tumors, is one of the most useful predictors of how a disease will progress, but doesn’t cover all the factors that determine cancer survival. Those factors include, but are not limited to: histology, or grade, of the tumors (the characteristics of the cancer at the cellular level); how the tumors respond to hormones; whether the cancer is detected early or late; what treatments have already been attempted; and the age, general health, and lifestyle of the patient. It’s important, says Vickers, for a patient to ask his oncologist what factors are being used to determine his prognosis.

Understanding the limitations of accurately grouping people for the purpose of making individual prognoses is only one of the pitfalls for a cancer patient. Even if cancer data are broken down into very specific subgroups, patients are confronted with making sense of the statistics.

Take median survival times, an example that the late historian and scientist Stephen Jay Gould wrote about more than two decades ago in an essay called “The Median Is Not the Message.” Diagnosed with a type of cancer, peritoneal mesothelioma, that at the time had a median survival of eight months, Gould realized that instead of having eight months left to live, the median meant that 50 percent of patients survived eight months, and 50 percent lived longer—some significantly so.

Rather than be depressed about the long odds, Gould, who was comfortable with statistics, was aware that he might be among the small group of patients who lived well past the median survival. Buoyed by his optimism, he enrolled in an experimental treatment program—and lived for 20 more years. Though most of the evidence suggests that having a positive attitude does not correlate with longer survival, having a realistic expectation of what is to come may improve one’s quality of life.

The flip side to underestimating survival is overestimating it, and Dr. Ethan Basch, a clinical oncologist at Memorial Sloan-Kettering Cancer Center, says that oncologists who focus on the upper expected limit of survival may be doing their patients a disservice. “The risk for an individual patient is that we give an overly optimistic prediction and he is surprised when it doesn’t go well for him,” says Basch.

Oncologists can clarify this point by presenting more of the data behind a prognosis, and doing a better job explaining what the data mean. Edwards suggests that instead rattling off statistics, oncologists might show a graph of population-based survival times for a specific type of cancer, explain what percentage of patients live for how long, and discuss the potential treatments with the patient.

Basch says that he sometimes uses nomograms—computer models of survival, based on the broadest possible sets of data from cancer registries and clinical trials—a tool Vickers says more oncologists should be discussing with their patients. A patient or her doctor can enter the patient’s information directly into a computer loaded with the nomogram to get individually tailored predictions about survival, the effectiveness of different treatments, and even the relative risks of treatment side effects.

While nomograms and other computer models will continue to improve the ability of oncologists to provide accurate and specific predictions, there is no substitute for communication between the patient and his medical team, says Basch. Knowing the potential outcome of a disease can have an impact on what type of treatment a patient decides on, what lifestyle choices a patient makes, and whether declining treatment might be the best use of one’s time.

To some, the information contained in a prognosis causes too much anxiety, or creates what feels like an expectation of survival, says Basch. The biggest pitfall, then, may actually be the first a patient confronts: whether he wants to know his prognosis at all.

Life

Just a quick note that I added a few dozen or so new blogs from cervical, ovarian, and prostate cancer survivors.  Of course, as always, I found a few more breast cancer blogs too. My son is sending me the HTML code for organizing the lists better.  Be sure to check yesterday’s post for discussion questions for Monday’s Book Club.

Life After Chemotherapy:  Daily Tasks, Quality of Life May Be Affected (it’s offical!)

ScienceDaily (July 23, 2009) — Each day, thousands of people undergo chemotherapy treatments for different types of cancer, and it is widely known that patients are negatively affected during the treatments; previous research has shown decreases in cognitive functioning among cancer survivors following treatment. However, scientists were unsure how these cognitive declines might affect daily tasks or quality of life when the treatments ceased.

A new study at the University of Missouri reveals that, following chemotherapy, mild decreases in skills, such as verbal fluency and problem-solving ability, affect the quality of life for cancer survivors.

“These aren’t huge deficits in cognitive functioning, but now that we are aware of these lingering effects, we can do something to help these patients,” said Stephanie Reid-Arndt, an assistant professor of health psychology in the MU School of Health Professions. “After treatment, it isn’t that you are severely impaired, but you might experience some mild weaknesses. Our next step is to examine some specific interventions and see which ones might help with these difficulties.”

During the study, Reid-Arndt, and her colleague, Michael Perry, a professor in the Division of Hematology and Medical Oncology in the MU School of Medicine, studied women who had been treated with chemotherapy for breast cancer. The researchers tested the women three times during the year following their chemotherapy treatments. The scientists evaluated neuropsychological functioning, self-reported cognitive difficulties, fatigue, the amount of social support they sought, depression, and the quality of life experienced by the breast cancer survivors.

While some of the findings affirmed older research, such as how fatigue and a lack of social support are important predictors for poor quality of life, Reid-Arndt identified two measures of daily cognitive functioning that seemed to affect quality of life. Verbal fluency, such as the ability to recall certain words when necessary, and self-reports of problems with memory concentration were indicators of poor daily functioning and poor quality of life among patients.

“It was a small, but significant percentage of breast cancer survivors that were reporting these problems in the study,” Reid-Arndt said. “The daily difficulties related to these problems tend to be mild, but these findings tell us that these women are experiencing cognitive problems that may be a source of stress.”

Over the length of the study, Reid-Arndt and Perry did see improved cognitive functioning in each of the areas assessed. In her next study, Reid-Arndt hopes to identify specific interventions that could benefit patients experiencing these challenges. Some of those interventions might include the use of pharmaceuticals or cognitive behavior techniques, such as relaxation training and the use of a daily planner to relieve the stress of remembering various daily details. According to Reid-Arndt, the answer will be determined when an intervention helps these patients to manage their lives better.

“It would be helpful, if a patient is going to have chemotherapy, to discuss potential side effects with a doctor and be ready with a plan in case she does experience these cognitive difficulties,” Reid-Arndt said.

~ If you missed last night’s episode of So You Think You Can Dance, you missed an incredibly emotional performance. The song, “This Woman’s Work” written by British artist, Kate Bush, sets the scene for an incredibly heart wrenching performance. Maxwell has performed the song that is the background for a dance focusing on the struggle a woman faces when undergoing breast cancer.  Ellen DeGeneres is a guest host, and the panel, as well as the audience, are all moved to tears. In the video player below, I’ve included the Breast Cancer dance, including the judge’s comments, as well as Mawell’s and Kate Bush’s performance of the song.

Any woman who is facing breast cancer, survivors, or those who’ve lost loved ones to breast cancer will undoubtedly be moved by this performance.  The choreography was produced by Tyce DiOrio, the dance was performed by Melissa and Ade.

Tyce DiOrio was nominated in 2009 for an Emmy. It is very likely that he will be nominated for this performance as well.
* I haven’t figured out how to upload the video to my site.  Click: YouTube – So You Think You Can Dance – Powerful Breast Cancer Tribute

cancer