"When Cancer Hits Home" by Dr. Patrick Maguire

"When Cancer Hits Home" by Dr. Patrick Maguire

Hello to my blogger family. I hope all is well and that the sun shines brightly in your heart today.

I wanted to share with you a wonderful resource that helps people navigate the minefields of cancer-land.  It's called "When Cancer Hits Home" by Dr. Patrick Maguire.  I was honored to have had the opportunity to ask Dr. Maguire a few questions about Ovarian Cancer.

Dr. Maguire's book is detailed and yet broad enough to include information on many forms of cancer. All of us are damaged by cancer. Either we have it or love someone who has or is battling cancer.  Hopefully we are looking in the mirror and saying we beat it, but sadly that is not always the case.

When I was diagnosed with ovarian cancer, research was frightening. My family and I were thrown into research mode and it was very stressful.  Searching within the internet, contacting cancer resource centers, helping me ask questions.  I was constantly on the computer.  When I went to my local library there was only ONE book on ovarian cancer! We were overrun, beaten and confused by hunting for reliable and accurate, and mostly hopeful information.

"When Cancer Hits Home" provides a much needed guide as we enter this deep and often dark path towards treatment.

Here are the questions I had asked with the help of his publisher.

 Thank you Dr. Maguire for taking time to share your thoughts and expertise with me in the hopes that others can benefit from your work and your book.  

Peace

1.  Is Dr. Maguire willing to tell us details about current medical training for PCPs on Ovarian Cancer?  What kind of training do our medical students receive?

Most medical students' training in oncology is limited overall. Generally, third and fourth year med students learn from patients who have cancer during their internal medicine, surgical, and sometimes ob/gyn rotations. At major medical centers, students may choose an elective experience in medical, radiation, or surgical oncology including gyn onc. Interactions with patients who have ovarian cancer would be limited to these experiences for the most part. Since most primary care physicians are trained in internal medicine and family practice, their knowledge base and experience with ovarian cancer would also be limited. Most general gynecologists should have at least basic knowledge of ovarian cancer and interacting with patients in this regard, since they spend time during residency training specifically with gynecologic oncologists treating female cancers.  

2.  The trend seems to be to eventually divert gynecological follow-up back to a regular OBGYN when an OC survivor is in remission.  What is Dr. Maguire's position on this trend? 

Because ovarian cancer is generally found when advanced and has high risk of recurring/returning, immediate follow-up for at least the first few years should be with a gyn oncologist rather than general gynecologist in my opinion. When likelihood of cancer returning starts to decrease after few years, it's not unreasonable for patients to change their follow-up care back to their general gynecologist if more convenient and they are comfortable with gynecologists'  handling of their survivorship plan. 

3.  How can we teach family members and caregivers and even doctors and social workers about the chronic side effects of TAH-BSO and chemo? (total abdominal hysterectomy, bilateral salpingo-oopherectomy)

Because ovarian cancer is both less common and more deadly than breast cancer, for instance, general medical providers as well as the public have less understanding of the disease, its treatment, and potential long-term side effects. Patients, their families, and other advocates will need to continue to be vocal in this regard to spread the word and teach others (& get more research dollars for the cause!).

4. Does he recommend clinical trials for women who are in remission? 

I am a vocal proponent of clinical trials in general, because I firmly believe they're the best way to rapidly advance our understanding of cancer, its treatment, and move towards a cure. While most clinical trials are geared toward improving methods of treatment, there are many "symptom management" trials open for cancer survivors that can be quite beneficial. I usually tell my patients who are candidates for a clinical trial that "it may help you, and will definitely help future patients."

5.  How does a woman with ovarian cancer know she has a good gynecological oncologist?  What are the signs? 

In When Cancer Hits Home as well as my new eBooks, Empowered Against Breast Cancer and Empowered Against Prostate Cancer, I discuss the "Three C's of a Good Cancer Doctor." They are competence, compassion, and communication. Even gyn onc surgeons need to have all three C's to rate as good doctors in my book!  

6.  Any other advice? 

Raising awareness about ovarian cancer is critical because in cancer research, as in many aspects of life, "the squeaky wheel often gets the grease." It's no coincidence that dramatic advances in breast cancer have occurred during the past several decades of excellent funding of laboratory research, clinical trials, etc. While potentially more challenging for ovarian cancer, I'd like to see more rapid advancement of less toxic treatment options and an effective screening test for the disease. You are advancing that cause right now, which is very valuable!

Parick Maguire, MD

http://www.amazon.com/dp/0615391117/ref=rdr_ext_tmb

( I do not receive any payments from this link, I am just sharing it for your benefit in case you want to buy the book............Denise  Peace, Love  and Blessings to all)

Land of the Lost

Does anyone remember the first Saturday morning TV show called the "Land of the Lost"?  It opened with a dad and his two kids on a raft going down a waterfall and arriving in a land of ancient times.  Dinosaurs and reptiles and really big strawberries abound!  I feel like I am in the land of the "lost" still.  I know I've been harping on this chemo brain stuff but it's really annoying me.

First of all, every time I go to see my counselor, I get lost on the way there.  And to make it worse, because  I just moved, I go in the wrong direction all the time.

This IS Seattle though, so I don't take all the blame.  For those of you who don't know what it's like to drive in Seattle, it's a maze.  There are a lot of lakes and bridges and hills and there are no grids out here.  Streets are windy and go in all directions............so anyway.

I had another cognitive test done at Fred Hutchinson a few days ago, got lost on the way there, got lost in the building, and I've been to that campus only a million times.

Had to go downtown last night for work training, got lost on the way there, got lost on the way home.

I am having trouble with my new job because I can't remember how to search on their computer to research answers and solutions and information for my clients.  That is really worrisome for me...........not good.

It's so hard to explain that I can't "find' information quickly.......and then I forget how I got there.

It's like the homing device in my brain went kerplunk.  I'm sure there's a specific part of our brain that recalls visual tracking, I should remember that, but I don't.

Before chemo, my directional memory was awesome.  I am not gloating.  I used to drive all over the place and rarely got lost.  Plus, at work I was the person other's relied upon to remember appointments and important deadlines, etc.  I was a super organized person.

Now, I can't remember to make my to do list and when I make my to do list, I forget to use it.  Crazy.

Then, oddly enough, during the test, I was good at remembering numbers.  Weird.

I guess my concern is really about being able to stay in a good standing at work.  I had no idea that I would have such a hard time learning new things.  I was such a good student in college, and was able to memorize all kinds of things, no matter what kind of job I had.  I even did some community theatre for a bit, and that required an above average memory.  Sooooooooooo, all I can say is that chemo did a number on my noggin'.

I do have hope though that this will continue to improve over time.  But if I forget to do something or forget a name or forget an event, please forgive me.  I am not offended by reminders either, and welcome them as a matter of fact.

Like, the other day, after my cognitive testing, I met with a teal sister for coffee before getting mom at dialysis.  My friend asked me how my day was and I couldn't remember where I had been.  I laughed and said "I don't remember............wait..........oh ...........This is funny but I forgot that I went to do a memory test this morning".  I just laugh at myself now, but when it comes to work, that isn't funny..........aagh

Life could be worse...................I love you all!!!!!!!!!!!!!!!!!!!!!!!!!

Brain image compliments of http://www.pbs.org/

Something creative and beautiful

Here is a link to an Art Tutorial created by my sister.  I am so proud of her.  I thought I'd share something that brings joy today.  We all need art in our daily lives.  Art creates emotions and gives us life!  Art speaks truth.  Peace.

http://poppytalk.blogspot.com/2011/10/art-tutorial-drink-up-these-kitchen.html

I love you sis!

From NEJM on Drug shortages

Perspective

The Shortage of Essential Chemotherapy Drugs in the United States

Mandy L. Gatesman, Pharm.D., and Thomas J. Smith, M.D.

N Engl J Med 2011; 365:1653-1655November 3, 2011

 Comments open through November 9, 2011

Article

References

Comments (8)

For the first time in the United States, some essential chemotherapy drugs are in short supply. Most are generic drugs that have been used for years in childhood leukemia and curable cancers — vincristine, methotrexate, leucovorin, cytarabine, doxorubicin, bleomycin, and paclitaxel.1 The shortages have caused serious concerns about safety, cost, and availability of lifesaving treatments. In a survey from the Institute for Safe Medication Practices, 25% of clinicians indicated that an error had occurred at their site because of drug shortages. Many of these errors were attributed to inexperience with alternative products — for instance, incorrect administration of levoleucovorin (Fusilev) when used as a substitute for leucovorin or use of a 1000-mg vial of cytarabine instead of the usual 500-mg one, resulting in an overdose. Most cancer centers quadruple-check drugs for accuracy, and we're unaware of any documented death of a patient with cancer such as the nine deaths in Alabama attributable to the use of locally compounded liquid nutrition because the sterile product was not available. However, it is only a matter of time.

These shortages have increased the already escalating costs of cancer care. Brand-name substitutes for generic drugs can add substantial cost. For instance, Abraxane, a protein-bound version of paclitaxel, costs 19 times as much as equally effective generic paclitaxel (see tableAverage Wholesale Prices (AWPs) of Selected Oncology Drugs in Short Supply and Their Potential Alternatives.). Since 2010, health care labor costs in the United States have increased by about $216 million because of the increased time and work required to manage drug shortages.2 A gray market for essential drugs — an unofficial alternative market of drugs obtained by vendors outside the usual distribution networks — has grown rapidly, with unregulated vendors charging markups of up to 3000% for cancer drugs.

The main cause of drug shortages is economic. If manufacturers don't make enough profit, they won't make generic drugs. There have been some manufacturing problems, but manufacturers are not required to report any reasons or timetable for discontinuing a product. Contamination and shortages of raw materials probably account for less than 10% of the shortages. In addition, if a brand-name drug with a higher profit margin is available, a manufacturer may stop producing its generic. For instance, leucovorin has been available from several manufacturers since 1952. In 2008, levoleucovorin, the active l-isomer of leucovorin, was approved by the Food and Drug Administration. It was reportedly no more effective than leucovorin and 58 times as expensive, but its use grew rapidly. Eight months later, a widespread shortage of leucovorin was reported.

The second economic cause of shortages is that oncologists have less incentive to administer generics than brand-name drugs. Unlike other drugs, chemotherapeutics are bought and sold in the doctor's office — a practice that originated 40 years ago, when only oncologists would handle such toxic substances and the drugs were relatively cheap. A business model evolved in which oncologists bought low and sold high to support their practice and maximize financial margins. Oncologists buy drugs from wholesalers, mark them up, and sell them to patients (or insurers) in the office. Since medical oncology is a cognitive specialty lacking associated procedures, without drug sales, oncologists' salaries would be lower than geriatricians'. In recent decades, oncology-drug prices have skyrocketed, and today more than half the revenue of an oncology office may come from chemotherapy sales, which boost oncologists' salaries and support expanding hospital cancer centers.

Before 2003, Medicare reimbursed 95% of the average wholesale price — an unregulated price set by manufacturers — whereas oncologists paid 66 to 88% of that price and thus received $1.6 billion annually in overpayments.3 To blunt unsustainable cost increases, the Medicare Modernization Act mandated that the Centers for Medicare and Medicaid Services (CMS) set reimbursement at the average sales price plus a 6% markup to cover practice costs. This policy has reduced not only drug payments but also demand for generics. In some cases, the reimbursement is less than the cost of administration. For instance, the price of a vial of carboplatin has fallen from $125 to $3.50, making the 6% payment trivial. So some oncologists switched to higher-margin brand-name drugs.4Why use paclitaxel (and receive 6% of $312) when you can use Abraxane (for 6% of $5,824)?

Now practices are struggling to treat their patients because of the unavailability of drugs. Short-term solutions include gray-market purchases, which more than half of surveyed hospitals say they've made, but that option introduces safety and quality-control issues. Pharmacists are intensively managing inventories and alerting prescribers to developing shortages and potential alternatives. Some centers now have a red–yellow–green system for quickly recognizing developing shortages and determining which patients get priority (usually those with curable cancers) when supply is limited.

Long-term, non–market-based solutions have been elusive. Proposed legislation would require manufacturers to give 3 to 6 months' notice before discontinuing a drug in order to allow others to pick up production. However, it is likely that gray-market vendors would buy the remaining inventory of such drugs and charge huge markups. Creating a national stockpile is impractical: Do we stockpile the drugs and then waste whatever is not used or stockpile the ingredients and make new batches as needed? A national health care plan with a single formulary and a central pharmacy stockpile is possible for Medicare or Veterans Affairs but unrealistic given oncologists' dependence on drug income and difficulties with timely, safe distribution.

Market solutions take one of two approaches: let the market work and accept short-term uncertainties or regulate the market more tightly. For instance, the CMS could reimburse at the average sales price plus 30%, but that wouldn't help if the drug price has fallen from $125 to $3.50 per vial. The government could set a floor for average sales prices to encourage the production of generic drugs, but that would increase the total cost of cancer drugs unless brand-name prices were reduced. Europe has fewer shortages for that reason: prices are set higher for generics so that companies will make them, but prices of brand-name drugs are often much lower than U.S. prices.

More far-reaching reforms of oncology practices and reimbursement are necessary if there is no national intervention or federal market regulation. One solution is adopting clinical pathways for which practices are paid disease-management fees that are not based on chemotherapy sales. For instance, one large oncology group has developed care pathways specifying preferred drug combinations and sequences — for example, allowing only a few first-line, mostly generic regimens for patients with non–small-cell lung cancer, as compared with the 16 possible drugs and many more combinations included in National Comprehensive Cancer Network pathways. This approach has been shown to result in equal or better survival, less use of chemotherapy near the end of life, and 35% lower costs than usual care.5 Another solution is to pay physicians salaries, as Kaiser Permanente, Veterans Affairs, and most academic centers do, but that would reduce oncologists' earnings at a time when a 40% workforce shortage is predicted, so the effect must be monitored.

To ensure a predictable supply of generic cancer drugs, manufacturers need reasonable markets and profits, and oncologists need incentives to use generics. Standardized clinical pathways with drug choices based only on effectiveness will enable the prediction of drug needs, practices for effective management of inventory, and planning by manufacturers for adequate production. Such pathways, disease-management fees, and physician salaries would dramatically change oncologic practice, but since drug costs will increase by 4 to 6% this year alone, they are necessary. The current system not only is unsustainable but also puts oncologists in potential ethical conflict with patients, since it hides revenue information that might influence drug choices and thus affects costs and patients' copayments.

The only good news is that the drug shortages may catalyze a shift from a mostly market-based system to one that rewards the provision of high-quality cancer care at an affordable cost.

Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.

This article (10.1056/NEJMp1109772) was published on October 31, 2011, and updated on November 2, 2011, at NEJM.org.

SOURCE INFORMATION

From the Virginia Commonwealth University Health System, Richmond (M.L.G.); and the Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins Medicine, Baltimore (T.J.S.).

Cancerland is One Big Game of Pac Man

Fascinating research given to me by one of my teal sisters on how fatty tissue and omentum fuel cancer.  Anyone effected by cancer needs to read this!

http://www.eurasiareview.com/30102011-fat-cells-in-abdomen-fuel-spread-of-ovarian-cancer/

A Rebirth and a new place

It's been a while since I shared  news about my status.  My apologies as I have been moving, and well, I'm tired.  Lot's of emotions moving out of my dear mom's home into an empty apartment.  But it was time, and mom really wanted this for me.  Love you mom.

Every morning for the past two years mom and I would enjoy our coffee together and catch up on the news.  I would eat my oatmeal and for two hours or so, life was heavenly.  Even if I was in pain or tired from chemo, we would still enjoy that time together.  I would get to hear tid bits of stories from long ago about her childhood, or a rant about something important politically in the world.  Mom holds back on nothing.

I really didn't want to leave, especially now that she is on dialysis.  The house is too small and her plate is full with questions, worries, and concerns for her future.  She needs time and space for peace now.  I see her  a lot anyway, so it won't be too bad.  I just really miss her so much.

Now I'm in a secure apartment managed by a very kind woman who thinks of this complex as a community.  I like that.  I will include a photo in my blog when I get my furniture and pictures arranged.  I found a small wooden table as a give-away, and am using that for my dining table.  Mom was so generous to give me one of her couches and a living room side chair.  My sister and her husband helped me move, thank you guys!!!!

It feels like a dorm room right now, not really homey.

Thanks to comcast and their evil doings, I have no television.  I'm trying to look at this lack of television as an opportunity to reflect and pray more.  It's probably a good thing at the end of the day.  I miss my CNN and Hoda and Kathy though.  No cooking channel, what's a girl to do?  Ha.  Thanks to Pat and Mandy for offering Hulu to help with the TV.....yaaaaaaaaaaaaaaaaaaaaaaaaay!

I just found out my niece passed a black belt flip test last night...............yaaaaaaaaaaaaaaaaaaaaay.  Later today I hope to see my other niece at a performance in the zoo.  The rest of the family is well overall, I wish we all lived in the same area, like when we were little kids.  I really do.

On the medical front, my CA125 is 11 and my latest exam was normal.  In 3 months I have a pelvic CT scan.  My mammogram and breast MRI are good too, but I'm still seeking the opinion of a surgeon to consider a prophylactic mastectomy.  Sigh.  Still totally undecided, I just want to talk.

That's all for now.  I really hope you are well.  Peace and blessings and hugs and smiles to you.

Steve Jobs 1955-2011

This brilliant man died yesterday fighting a never ending battle with cancer and the health complications of his war.  Cancer steals our souls, our hearts, our minds.

 We must actually find a cure, not some sort of palliative medication that allows us to "live with cancer as a chronic condition". 

I'm sorry,  I don't want to dampen our hopes or be "negative".  I'm just being real.

I don't want cancer to become a chronic disease.  It needs to remain a disease to be cured!!!!!!!

Every single person on this planet carries equal value and importance, but few of us actually soar above the flock and really make a true, positive difference for the masses.  Steve Jobs was an individual who's vision changed the way the world communicates.

For the fleeting moment along the spectrum of time wherein each of us breathes God's sweet air, we must strive to do only good.  When drug companies decide to desire to do good, we will find a cure for cancer. 

Peace, Blessings and condolences to the Jobs Family and people at Apple.

Steve Jobs, Rest in Peace

Join Yale University to do the WALC-N Study

Hello Teal Family,

I am grateful to be participating in a very important study, about walking and our health as women who have experienced the wrath of ovarian cancer.  If you, or any woman you know, is interested in participating in this very important study, please contact Yale University.  This is a fully randomized study.

Please forward this to all of your teal sisters.  There is no other study of this nature being offered in the Ovarian Cancer community.  Your participation could save a life.

From WALC-N Study at Yale University:

We are inviting women diagnosed with ovarian cancer and living anywhere in the USA to participate in the 

WALC-N Study (sounds like “walking”). 

This research study will examine if a 6-month home-based walking program, with weekly phone calls and counseling from our certified personal trainer, will improve quality of life, fatigue and other ovarian cancer outcomes.

http://publichealth.yale.edu/people/melinda_irwin.profile

This is my dear mom.  Looking at her in this photo I see the true spirit of my mother.  She has in her hands my sister's Sketchbook Project booklet http://weatheredsilo.blogspot.com/2010/12/my-sketchbook-final-entry.html   Mandy is such a natural artist, as is my mom.  Even my brother is greatly talented.  My mom loves art.  In this candid moment I see her sincere deep joy in seeing my sister's works, and just being so so so happy for Mandy.

I am here to witness this joy!  I am here to participate in life and be with my family. There is no greater joy to me, other than my reverence to our dear Lord, than to be with my family.  All of my family, which includes you.

Thank you all for supporting Ovarian Cancer Awareness month, and a shout out to Tammy G. for wearing her teal shirt as she holds her precious daughter Lila.

The point of this post is that I could have missed this moment, but I didn't.  Thank you God.

Love,
Denise

Dr. Oz and the test you can take to your doctor

Dr. Oz is a champion in the campaign to "Break the Silence on Ovarian Cancer"  These images are selected from  www.doctoroz.com.  Dr. Goff of the Seattle Cancer Care Alliance appeared on his show and is a re-assuring presence in this fearful arena of OC.  

Please visit his website to learn about the lifesaving measures we can take to prevent Ovarian Cancer from growing out of control  

http://www.doctoroz.com/videos/5-ovarian-cancer-warning-signs-pt-1?hs317=billboard_3

There is nothing I can personally add to this informative program accept to say that I wish my gynecologists and PCP from my pre-OC life were paying attention.  Don't let your doctor fall asleep at the wheel.

Beauty in my Sister's Paintings

WEATHERED SILO

taking the mother rd 150.00 buy	waiting 150.00 buy	worldly possessions 150.00 buy	fryin' pone 150.00 buy
ruthie's red 150.00 buy	faded clover 150.00 buy	taking the mother rd 30.00 buy	waiting $30.00 buy
worldly possessions $30.00 buy	fryin' pone $30.00 buy	ruthie's red $30.00 buy	faded clover $30.00 buy

WEATHERED SILO

profile: 

I am THRILLED to be participating in Poppytalk Handmade alongside so many talented artists. I invite you to view my latest collection of acrylic paintings and limited edition giclée prints from my DUST BOWL GLIMPSES series.

I live with my family in Seattle and have an affinity for the old ways. When creating my shop name I immediately thought of my great-grandparents and their parents who homesteaded in the early 1900s on the prairies of Kansas, Colorado, and New Mexico. "weathered silo" pays tribute to my ancestor's resilience and resourceful ways of living off the sometimes unforgiving land and it's untamed beauty.

I look forward to meeting you. Cheers, Mandy

shop: 

http://www.etsy.com/shop/weatheredsilo

website: 

http://weatheredsilo.blogspot.com/

twitter: 

http://twitter.com/weatheredsilo

http://www.poppytalkhandmade.com/table15

Mom I admire you

I have been asked many times by my Seattle doctors, and recently a psychologist, to identify what really kept me going every day.  It is not easy to identify the force that drives us to live, even when we are healthy.  When we are healthy, we wake up and live our lives.  

We go to sleep and start over the next day.  "Living" is up to God and is not in our control, but the "will" to live comes from another place.  I always look to God and find that the people around me give me the desire to keep going.

My mom was and remains a driving force behind my will to traverse the path of a new life, even when I just want to quit.  I'm in a tough spot, and need to get an actual life started again.  It's more about resources.  I have none....ha!  I just have to think positive and believe that I will be able to take care of myself financially.  That's all I can do.  

My mom believes that I will make it.

Although my mom has started dialysis, she is determined to remain independent and that means that I am being requested to keep looking for a new place and resume some sort of life, after cancer. 

 I could stay here forever, because I want to be here if she needs something.  She is so strong. I will miss her so much when I move out.

My mom is AMAZING.  She is more driven and determined and motivated to live than anyone I know.  She is a Type I diabetic, has been for over 40 years.  Usually Type I diabetics need to start dialysis after 20 years, but my mom has taken such good care of herself that she has been able to wait 40 years.

She has to work to keep herself alive every day, maintaining her insulin pump, checking her blood sugars, watching every calorie, and type of food.  Now that she's started dialysis, we find ourselves spending 15 hours a week at a treatment center and she is hooked up to a machine that cleans her blood.

This is her new life, machine one and machine two (insulin pump and dialysis).  If she decides to stop connecting herself to either machine, she will die.  

So she wills herself every day to connect to a machine, and live.  She too has pain, and complications, but just keeps on keeping on.  

She is so forgiving, so forgiving.  Puts me to shame.  One of her doctors could have given her a little better advice and it caused her some problems, but that is over now and she is just moving forward.

God asks us to be forgiving and love our neighbors.  I believe that God uses people around us to talk to us in subtle ways, and we need to just listen.  Be quiet, and alert, and open to the cues.

There are many other people in my life, family and friends, who give me "will" to keep going to find my new life, but I just wanted to spend a little time talking about mom.  

She is an artist, a debater, an activist, a rebel, a great caregiver, and a great grandmother.  Her creativity is endless and she is passionate about all people having equal opportunity and that all humans are treated with dignity.  She is so intelligent, and strong-willed.  She is very loving. 

I love you mom.

Denise