Gateway to a future...

Job News:

Just about seven  years ago I was reborn at Indiana University Hospital.  With my brother as my donor I underwent an allogeneic peripheral blood stem cell transplant.  My twenty-two days there remain hazy, a vague kind of dream from which I awoke with a new life.  Part of the time I was fighting the predictable infections that accompany the procedure – that period when my immune system in defenseless while engraftment is taking place deep in my bone marrow.

I remember well the night I got up to go the bathroom.  Yes, the nurses said to put on the call light first.  But I was an adult.  I was a nurse so I was capable of assessing my ability to walk unaided.  Then the room began to spin.  I whirled and crashed in to glass-fronted cabinet, bumping my head on the corner.

Dejected and embarrassed, I sat down on the bed and put on my call light.  Two nurses rushed into my room, examined the small cut on my forehead and scolded me gently.  My wife came in at 3:30 in the morning.  I went downstairs for a CT scan.  I remember being bald at the time but for the rest I would have to consult my Caringbridge entries.

Today I accepted a position working part-time evenings in the Bone Marrow Transplant Clinic at the same hospital, just down the hall from my original room.  This will be an ideal job.  I will be the only person in the clinic after six.  My patients will not be there for active infections.  The rooms are Hepa-filtered. And I only work 4.5 hours a day.  So my exposure risk (my immune system is still immature at six years old) and working hours are minimized.

I will still have days free to care for my granddaughters and my mother.  But the biggest excitement is   being able to share with my patients the kind of additional legitimacy conferred by our shared experience, in addition to my twenty-five year background in oncology.  So in returning to IU there is an appropriate kind of symmetry.

We will have to see how this new schedule affects my ability to keep up with the blog.  On the other hand, having the opportunity to work so closely again with people struggling with cancer will certainly give me more to write about.

Book News:

Sheryl Crow – Rockstar.  Singer-songwriter.  Record producer.  Actress.
Cancer survivor.  Activist.  Mother.  And now Cookbook author has written a new book  – IF IT MAKES YOU HEALTHY–written with Chef Chuck White–is filled with over 125 seasonal, locally grown and delicious recipes as well as notes from Sheryl about life on the road, home, and stories of her childhood & path to stardom.

Ashley Murphy, fellow blogger (Ashley’s Art Closet) and liver cancer survivor, announces publication of her book Daddy’s Briefcase.

Check it out at http://ashleysartcloset.blogspot.com/2011/03/daddys-briefcase.html

Drug News:

Pharmaceutical Research and Manufacturers of America (PhRMA) is offering  a new report that details 887 new medicines in clinical trials or under FDA review for Cancer. Go to Cancer | PhRMA and download the 92 page PDF file at the bottom of the page.  Drugs in development are divided according to kind of cancer.

It’s the nature of the Beast (double entendre intended) but we tend to publish more news that is bad than is good.  Sometimes it seems that the most we can hope for is an emotional and psychological victory over our daily trials and tribulations with the disease and its treatment.  Medicine is so cautious.  So we rarely get to declare that we are “cured”, that the cancer is gone never to return again.

It is rare find find when we discover a piece of unabashed GOOD NEWS.  Let us all join then in congratulating one young, long-time blogger and lymphoma survivor who writes at My ride on the Hodgkins bus…

fertility

One of the issues facing young cancer patients that is just starting to get a bit of attention is fertility. Cancer treatments are designed to kill cancer … and whatever else needs to be killed in order to kill cancer. It’s been my experience and my opinion via conversations with others that the field of oncology isn’t especially interested in anything that isn’t cancer. Unfortunately, that means a lot of side effects are blown off, including but not limited to fertility.

Before I began treatments for my lymphoma, I was told that one of the possible side effects of the chemo was early menopause: my periods would stop during treatment and they might or might not start again.

I only missed one period.

Since chemo, however, I have had a bunch of other odd hormonal side effects that are annoying and slightly disconcerting but probably not life-threatening. No one can tell me why they’re happening or if they’re a problem (oncologist, primary care doc, ob-gyn), so I’ve never really been sure if all of the plumbing is working properly or not.

We have confirmation that all systems are in order — I am pregnant!

I have seen two docs so far —one at a birthing center and one in a regular office — and neither was of the opinion that my cancer history is a problem. I suspect that it being in a different part of my body is a big deal, and being in remission for over three years probably helps, too.

So I’m officially on my next wacky body journey, but this time cultivating the growth instead of trying to get rid of it. We’ll see how it goes!

~ from My ride on the Hodgkins bus…

New Bedford harbor

Here’s a little update on my situation and on some interesting cancer news that I have received in emails lately.

Headline:  1 in 20 Americans is a cancer survivor (CNBC)

Looking for Work:

I am beginning to understand the frustration of America’s unemployed.  The loss of a substantial portion of my disability benefits has left me scrambling for some kind of part-time employment.  All the news about the aging of the Baby Boomers coupled with steady talk about a nursing shortage would seem to indicate that I should have no problem returning to the field.  Intuitively, yes.  In point of fact, no.

The economy seems to have made the healthcare industry cautious.  As an old-timer my first impulse was to search the want ads.  But the classified section is skinny even  if it shows up in the daily paper.  And cruising through the newspaper reveals more ads for training schools than for actual jobs.  A recent announcement of EMT  jobs listed a requirement for a $10 application packet fee.

My next step was to look to the web.  I have signed up for numerous nursing groups resulting in daily deposits in my electronic mailbox of a broad range of nursing positions.  Problem is all are full-time and almost none of them are local.

The whole application process has been streamlined as well.  You set up accounts with various healthcare employers, establishing and electronic application and resume.  Then you must reapply for each new listed job that you interested in.  There are generally no contact names or numbers.  In fact you are advised that you will only be contacted if you are offered an interview.  Your resume must be simple and streamlined in order for it to be correctly scanned int the company’s database.

I am looking for 8-12 hours of professional (nursing) work per week or perhaps 20-25 hours of non-professional work.  It looks like I will only be able to secure very part-time nursing work through networking.  So if any of you out there have any connections, please let me know.  I have 25 years healthcare experience mainly in oncology but also in mental health.  I have been a clinical nurse, a nurse manager, a nursing educator, a speaker and consultant, a project developer, and I run two websites.  I can work from home on my computer.  I can travel locally.  Maybe there is a job out there that can use some of my talents.

Launchpad Winner:

From my email box came news that Anne Cheung was one of the winners of this contest which annually makes a cash award to five individuals who have designed projects to transform their community.  Anne’s Big Idea: Cancer patients face tremendously daunting tasks in managing and coping with their disease. Chinese-American cancer patients with limited English proficiency suffer additional uncertainty and emotional stress because of a lack of information and support in their native language. In a 2005-2007 survey, 65 percent of working-age Chinese adults and 90 percent of elderly Chinese in New York had English limitations. I would like to help to develop a Chinese cancer support group, which will provide information and psychosocial support in Chinese to these patients in New York.  (http://launchpad.encore.org)

Unraveling:

A while back we published our first fictional work by a woman who was inspired by the struggles of her mother and brother, both diagnosed with astrocytomas.  We are sad to announce that Marissa’s brother passed away last month.  The following is excerpted from her eulogy: I’m going to be travelling on a long trip, starting this summer. I asked Mickey what peaks he would climb if he was still able. We agreed on a list of 11 peaks, throughout the Pacific Coast of both North & South America. So, leave a message to Mickey on the sheet, and it’ll be cut into 11 pieces. I’ll leave a piece at the summit of each peak. As many of us can attest, sometimes the people that inspire us the most, are our next door neighbors, our football coaches, our siblings, or our ski instructors. So, thanks in advance for participating in this journey, dedicated to Mickey, and my luckiness to have him as brother.

But, no matter what, I feel the same as most of you feel: Mickey always wanted the best for everyone. I didn’t just lose a brother; like you, I lost a friend. A friend that knew me my whole life! - Unravel Cancer: Experiences with family battling cancer

Shared Cancer Experiences:

Terry Halsey wrote me recently.  Terry has an interesting website, an experimental resource, a repository of personal cancer stories.  Some stories are written by blog-authors.  Others are by persons who simply responded to this offer to share their stories.  What is unique here is a collection of accessible experiences organized from one cover page.  It’s a good place to start from someone just diagnosed, someone with an impulse to share.  Terry is looking for ideas and more stories.  If you haven’t had the opportunity to tell your own story, if your own blog seems like too big a step, this could be a good outlet. Even if you have your own blog, this is yet another avenue to be heard.  And the link to Steve Dunn’s work is worth the visit.  The internet is big enough for all our collected narratives.  – Shared Experience Cancer Support Database

National Cancer Survivors Day:

It’s coming up in a couple of months.  Information and merchandise at www.ncsd.org

Daria

With cancer things can happen rapidly.  And we are, all of us, inexorably, moving on.

Just Saturday I received the following comment from Denise, a member of our little blogging community: “Shades of Blue (ovarian), Shoppingkarma (ovarian)and Livingwithcancer (Breast) are all now in hospice care. Pateeta, Jayne and Daria are wonderful women whom have provided me with courage and inspiration. If you have prayers to send, I’m sure they’d be happy to receive. God Bless all who suffer.”

Before writing the post I checked on all three, only to discover that Daria Maluta (Living with Cancer) has died.  When I first started Being Cancer, not really knowing in what direction this site would go, I would search out and visit various personal cancer blogs, wanting to build a little blogroll.  On nearly every blog I discovered, I noticed a little note of encouragement from a woman named Daria.  Eventually I received my own note.  Indeed every time I would come down with a virus or infection, I could count on a short note from her.

I try to keep tabs on nearly 1400 bloggers so I know a little about this unique community.  But Daria is surely the most prolific commenter that I have encountered.  By her comments you always felt as if you knew her, that she was a friend, that she was in your corner along side you, fighting your fight.  You knew with her few gentle words that she understood what you were going through.  She had an amazing effect on dozens and dozens of survivors whom she never met.  Daria will be missed and mourned.

Her death reminds us of the fear that underscores all of our writing.  In featuring Guest Posts I try to celebrate those moments of clarity, those elegant epiphanies that serve to enlighten us all, to give voice to our collective suffering and triumphs.  Those brilliant moments captured in prose and sometimes in poetry lend meaning and purpose to our experience with that demon called Cancer.  I sometimes revel in the rich detail and nuance found in the writing.  Reading becomes its own kind of pleasurable experience.  It soothes.  It caresses.  It strokes our thoughts and emotions.

So we sometimes forget that what gives the power to those words, what gives the authority to that experience is that, with cancer, we are all flirting with our mortality.  At some time since I diagnosis, we have stood on the doorstep of Death, pushed open the door and peeked inside.  This is the source of power in our blogging – though we do not write for power.  We write because, for whatever reason, we need to.  In Daria we have lost a good one – but she has moved on…

Our Other Cancer Sisters….

Jayne

ShoppingKharma: What comes around goes around

Pateeta

Shades Of Blue

Kroenke

patient is newly diagnosed, undergoing treatment, or is a cancer survivor, according to researchers from the Indiana University schools of medicine and nursing and the Regenstrief Institute.

Common symptoms include fatigue, pain, weakness, appetite loss, dry mouth, constipation, insomnia, and nausea. These physical symptoms are associated with substantial functional impairment, disability, and diminished quality of life.

The study of 405 patients was reported in the Oct. 11 issue of the Archives of Internal Medicine. Numerous physical symptoms, rather than just a few, were prevalent in patients with cancer and this prevalence did not diminish after completion of therapy.

“We found that regardless of where they are in the course of their diseases, many individuals with cancer have a high symptom burden,” Kurt Kroenke, MD, the study’s principal investigator and first author, said. Dr. Kroenke is a researcher at the IU Simon Cancer Center, an investigator at the Regenstrief Institute, and a Chancellor’s Professor of Medicine in the IU School of Medicine.

“These symptoms impact them at home and at work throughout their lives,” he said.

Study participants – all of whom had pain, depression, or both – experienced substantial disability, reporting on average 17 of the past 28 days as either bed days or days in which they had to cut down on activities by at least 50 percent. Almost all patients reported feeling tired (97.5%) and most (78.8%) were bothered “a lot” by this symptom. Of the 22 symptoms studied, 15 were reported by more than half of the study participants.

In spite of high symptom prevalence, the researchers did not uncover greater use of the health care system. There may be several explanations for this, including patients’ inclinations to focus on cancer treatment while with their physicians or to accept the symptoms as an inevitable result of the disease or its treatment. Alternatively, the explanation may lie with the fact that those in the study, as cancer patients or former patients, were already frequently interacting with many parts of the health care system.

“Patients and their families should be encouraged to bring up symptoms like pain or insomnia with physicians. But because oncologists are necessarily focused on treatment of the cancer itself, they often have insufficient time to optimally evaluate and manage symptoms and other factors impacting quality of life. We have shown in an earlier study that one effective solution might be a partnership between a telephone-based symptom management team and community-based oncology practices,” Dr. Kroenke said.

The previous study, published earlier in 2010 in the Journal of the American Medical Association, reported that an economical, centralized approach is feasible to conduct and significantly improved symptoms of pain and depression in patients in any phase of cancer. That approach gave patients, many of whom lived in underserved rural areas, one-stop assistance they probably wouldn’t have had access to unless they went to a major cancer center, Kroenke said.

Recognizing and managing physical symptoms such as fatigue, pain, nausea, and insomnia may make a significant difference regardless of type or phase of cancer. The researchers plan to investigate medical and behavioral strategies and combinations of both approaches to control these symptoms.

In addition to Dr. Kroenke, co-authors of “Somatic Symptoms in Patients with Cancer Experiencing Pain or Depression” are Xin Zhong, RN, and Janet Carpenter, PhD, RN, of the IU School of Nursing; Dale Theobald, MD, PhD, of Community Home Health Hospice and Symptom Management Group; Jingwei Wu, MS, of the IU School of Medicine; and Wanzhu Tu, PhD, of the Regenstrief Institute and the IU School of Medicine.

The study was supported by a grant from the National Cancer Institute.

Four days of luxurious rain, my grandkids gone (it’s Sunday), and a perfect time for writing and maintenancing my site.  This is the longest period of inactivity (blogwise) since I started.   So it’s time to get back down to business.

First off I have added a Captcha plug-in to the site.  Captcha is that feature that requires site users to correctly copy a series of letters.  The theory is that only real humans can read these.  Lately I have been getting 2-3 news users registering each day, all with questionable user names and many from eastern European countries.  Most of these, if not all, are registered not by humans, but by automated “bots” or robots, programmed to log onto multiple sites in order to market questionable products, services, or pornography.  Other “bots” are designed just to set up a link to multiple blogs in effort to artificially inflate their ranking in search engines.

Today I deleted over 300 users.  I may have inadvertently deleted some legitimate site users.  I apologize for this.  In any case any new or deleted users will have to copy the Captcha phrase in order to register or post a comment.  I apologize for any inconvinience.  The situation was just getting out of hand.  I was filtering almost 10,000 spam messages annually.

Also woefully behind was my replies to emails.   Valerie Bosserman, The World As I See It….,  wrote me to say that she is a finalist in the CureToday Extraordinary Healer Award for my essay on Megan’s chemo nurse.  Megan, her daughter, died just two years ago of ACC.  Copy and past the link below to see the story.  (http://www.curetoday.com/index.cfm/fuseaction/cureEvent.HealerOverview/id/43)  I sure support any organization that recognizes the efforts of oncology nurses.  CureToday.com – Combining science with humanity, CURE makes cancer understandable.

I added a few new blogs to my lists.  Gillian Anstey is from South Africa and writes about her breast cancer at From under my hat.   Of special interest to me is a new T-PLL patient (that’s my disease) preparing for a stem cell transplant – Curing Vancura.  Tracey Hawker writes about her husband’s esophageal cancer at CaringBridge / johnhawker / Welcome.  Selena is an APL survivor maintaining a blog at Oh My Aches and Pains! Kristal writes a blog about life after cancer and training for a triathlon as a cancer fundraiser: TriathlonKrista.  A 37 year old single mom fighting Colon cancer for 5 years, has gone from stage 3 to 4 now, has metastasized to liver, and diaphragm – I’m Still Here…

The American Institute for Cancer Research will hold its annual Conference on Food, Nutrition, Physical Activity & Cancer in DC in late October.  Check the Events Calendar above for details.  Stand Up 4 Cancer has released two new videos as part of their Innovation Research Grant Profiles.  Check them out.   (http://tiny.cc/su2cIRGDrWalensky) and (http://tiny.cc/su2cIRGDrSilva).  Click and past in your browser address bar.

Julien Lieb, MD offers the following information on the effect of antidepressants on selected cancer.  Prostaglandins are infinitesimal, ephemeral and powerful molecules regulating the chemistry of every cell in the body, including cells regulating mood, and those regulating immune function. When produced within normal limits, prostaglandins regulate the chemistry of every cell; when produced excessively, physiology becomes pathology. When brain cells produce excessive concentrations of prostaglandins, they depress mood and immunity. In 1973, David Horrobin showed that antidepressants inhibit prostaglandins, and in 1977 that prostaglandins regulate nucleic acids (DNA and RNA).1,2 Others subsequently showed that prostaglandins regulate the synthesis, inhibition, and expression of genes, and the growth, differentiation, and replication of cells, with cancer the accelerated replication of abnormal cells.1,2 Excessive synthesis of prostaglandins induces cancer, with genes determining the variations. In 1998, Brenda Penninx showed that at age 70, chronically depressed people have an increased risk of 88% of developing cancer, and 50% of dying of it.
More than seventy clinical, laboratory, and epidemiological studies have shown that antidepressants kill cancer cells, inhibit their proliferation, convert multidrug resistant cells to chemotherapy sensitive, augment chemotherapy, protect nonmalignant cells from damage by radiation and chemotherapy toxicity, and target the mitochondria of cancer cells while sparing those of healthy ones.1,2 Antidepressants have therapeutic potential in many cancers that are often treatment resistant, such as gliomas, cancers of the lung, kidney, liver, and uterus, inflammatory breast cancer, and multiple myelomas.2 Antidepressants are capable of arresting lung cancer in advanced stages, and even reversing it. That antidepressants are effective for a multitude of malignancies, decries the myth that cancer is a hundred diseases, when it is one disease with a hundred variations.
Antidepressants alleviate cancer pain, alone or combined with narcotics, remit nausea and vomiting, promote sleep, relieve anxiety and depression, and combat fatigue. Other inhibitors of prostaglandins, such as COX-1 and COX-2 inhibitors, also have potential value in defeating cancer. The components are in place for a revolution in cancer prevention and treatment, as may be confirmed by accessing �Medline� or �Pubmed,� and entering �antidepressants� and �cancer.�
The history of medicine is littered with the suppression of innovation. Today many cancer organizations rely on the opinions of medical advisors, some of whom are political operatives of vested interests disguised as healers. It is not for a lack of innovation that we are in our predicament, but the suppression of it. In â��Against Methodâ�� Paul Feyerabend wrote that suppressing a paradigm in preference to one politically favored could permanently damage society, and that resistance to progress could be so intractable that political intervention might be needed. ** This is certainly a viewpoint, if a bit out of the mainstream.  It must be assessed within a broader medical and scientific context which is beyond my expertise.  As with all such information, you should discuss it with your medical doctor.

That’s all the news that is my news.  Later this week, look for a cancer book review, cancer website reviews, and a few guest posts.  Hopefully I am back on track.

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