Boobs On Ice™

Arimidex Bites the Dust as a Brain Fog Excuse

In September 2007 I had a small stroke, so sometimes I can blame my kind of spotty memory on that. Fibromyalgia syndrome, a chronic illness I've had for over a decade, is famous for causing brain fog, so that's a handy excuse too. Other days I say it's because I had four kids. All my brain cells exploded out my head during their teen years. 

Then take my husband. But that's an old joke.

In any case you can only use the same reason so many times. So about six months ago I tried adding a new excuse for my brain drain.

I started taking Arimidex, an anti-tumor medication that sucks up every tiny bit of estrogen left in my body, with the hope of keeping those pesky invasive cancer cells from growing. Arimidex comes with a list of side effects that "should be expected" that's as long as my arm.

I'm not getting any cooperation from the researchers when it comes to pointing fingers, however.

"BRIGHTON, England, Sept. 3 In postmenopausal women at high risk for breast cancer, two years of prophylaxis with an aromatase inhibitor did not lead to cognitive impairment, according a placebo-controlled study.

"Scores on tests of cognitive function did not differ at any time point between patients treated for 24 months with anastrozole (Arimidex) or placebo, Valerie A. Jenkins, D.Phil., of the University of Sussex, and colleagues reported online in Lancet Oncology.

"Similar numbers of patients in each group reported changes in memory after six months, and the number of affected patients decreased to a handful by the end of the study."

Great. I don't remember this story tomorrow I can't blame taking Arimidex. We're back to my poor unsuspecting children.

What's Making Waves in Our Brains?

"The cell phone is a remarkable invention and a breakthrough of great social importance. Our society will no longer do without cell phones. None of the members on the expert committee has stopped or intends to stop using cell telephones. This includes Dr. David Servan-Schreiber, a 16 year survivor of brain cancer. However, we, the users, must all take precautionary measures in view of recent scientific data on the biological effects of cell phone use, especially those who already have cancer."

Thus doctors at the University of Pittsburgh Cancer Institute, based on advice from an international panel, are urging not panic, but caution. But the number of doctors in their advisory group, and their cautious, workmanlike approach have made an impression on me.

Now with everything from estrogen, to food additives, to where my father worked, to what was in the water when I was five, to the air we breathe and what's in our mascara suspect as something that may have caused my cancer in the first place or make it more likely to pop up again, this is all a little unsettling.

And while I'm not unduly concerned, I am now bothered that my 10 year old granddaughter owns a cell phone - and I'm hoping she'll use it primarily for texting rather than talking.

Perhaps what gave me greatest pause recently were not the words in the Pittsburgh cautionary bulletin - but the image shown. 

"1) Electromagnetic fields from cell phones are estimated to penetrate the brain especially in children. (Figure 1.) . .  Modeling in the diagram below estimate that young children are more susceptible to electromagnetic fields due to smaller sized brains and softer brain tissue."

Figure 1. Estimation of the penetration of electromagnetic radiation from a cell phone based on age (Frequency GSM 900 Mhz) (On the right, a scale showing the Specific Absorption Rate at different depths, in W/kg) [1]

That's downright disturbing. While the doctors writing the report feel that "Electromagnetic fields generated by cell phones should be considered a potential human health risk" they also caution that not enough time has passed to really have data that is conclusive.

And perhaps the most important observation is that although studies have NOT proven that cell phones are safe NOR show that they present a hazard.

So in the meantime, while a definitive answer is in the works - and who can predict when all experts will agree (I predict: never) - why not do what this panel advises and be aware that:

  "..growing evidence indicates that we should reduce exposures, while research continues on this important question.

Read more about the recommendations from the Center for Environmental Oncology and their Environmental Health information. And let's be safe out there. At least as safe as we can figure out how to be.

DCA the Tiny Cancer Killer

“If there were a magic bullet, ... it might be something like  DCA…”  Newsweek, January 23, 2007   

DCA is a tiny molecule, odorless, colorless, inexpensive, relatively non-toxic and researchers including Evangelos Michelakis MD at the University of Alberta think it may soon become an effective treatment for many forms of cancer.

Michelakis, a professor at Alberta has shown that dichloroacetate (DCA) causes regression in several cancers, including lung, breast, and brain tumors.

Crossing borders

Alberta's program fosters research that crosses the boundaries of traditional disciplines and brings scientific research to the clinical treatment of cancer. 

Which brings us back to DCA, which has been used for decades to treat children with metabolism malfunction due to mitochondrial diseases.

As a kind of aside, mitochondria, the energy producing units in cells, have been connected with cancer since the 1930s, when researchers first noticed that these organelles dysfunction when cancer is present.

BUT until recently, it was believed that cancer-affected mitochondria are permanently damaged because of, not the cause of, the cancer.  Michelakis wondered about this and began testing DCA,which activates a critical enzyme as a way to "revive" cancer-affected mitochondria.

The results astounded him

Michelakis and his colleagues found that DCA caused the mitochondrias to start functioning again in many cancers, showing that the way they worked was suppressed by the cancer but not permanently damaged by it.

More importantly, they found that there was a drastic cut in tumor growth both in test tubes and in animals. And DCA, unlike most current chemotherapies, did not have any effects on normal, non-cancerous tissues.

Cancer Crystal Ball Could Help My Family and Yours

The Globe and Mail Saturday reported about a Cancer test that can be a genetic crystal ball for Jewish women.

"For the first time in Canada, Jewish women will be offered the chance to alter their genetic destiny by taking a test - at no cost to them - that will determine whether they are at high risk of developing breast and ovarian cancers.

By screening for three inherited breast cancer gene mutations common to those of Ashkenazi Jewish ancestry, Women's College Research Institute scientists have an ambitious goal: to prevent the dreaded disease before it strikes."

This development comes after decades of worry - often followed by diagnoses of ovarian or breast cancer - and too often death - for women around the world.

Some surmised that they were at risk for cancer because their mothers of close family were struck by early, swift growing, sometimes quick killing cancers. Nearly none knew exactly what their risks were.

And until Canada took this groundbreaking step, women have gone through years of jumping through hoops to get anyone to hear their questions or fears; much less adequately answer them.

This strikes way too close to home

I've been discussing this genetic time bomb with an online friend who had a series of  prophylactic surgeries because of her genetic status combined with some precursor symptoms that did not mean cancer but meant: probably cancer down the road.

And all the time I've been thinking and wondering - will we ever know the possibilities that might await my own family? Because of the kind of cancer I have my surgeon recommended that my daughters have ultrasound breast studies and not rely on mammograms which did not pick up my cancer even when it was a 5cm entanglement of cells running through my breast.

And remember my elder granddaughter who will soon be ten? The "basket case" video granddaughter has a double risk. Both of her grandmothers have had breast cancer. On her father's side her grandparents are of Eastern European Jewish descent which may mean the BRCA gene. Of course my concern is that she will never know.

Life's journey has never been easy and there are no guarantees.But perhaps this move in Canada will make a difference for some.

I'll be following up with more links and resources as I learn, and perhaps help others learn as well, about genetic links to breast cancer and how women deal with the risks, the uncertainties and the realities.

I Wish We Would Have Known

What to Expect of Cancer

• Supportive Care - fatigue - DanaFarber 

• Supportive Care - Pain - DanaFarber

• Fever, Sweats, Hot Flashes in Cancer patients

• Breast Cancer Treatment (PDQ®)

  from a German website, attributed to the National Cancer Iinstitute in the US. Clear guidelines & descriptions of stages, what might be done, etc.

  

Spread of Cancer / Metastasis

• Breast Cancer - resources - info - more about spread to bone - Merck Manual   Radiation therapy is usually the most effective treatment for cancer that has spread to bone, sometimes keeping it in check for years

• Metastatic Cancer: Q&A - National Cancer Institute

• NCI National Organizations Database
  

    Numerous organizations and facilities provide services to people with cancer and our database
  contains many, but not all of them.

• CancerCare: Update on Metastatic Breast Cancer
  

    3 cancer docs discuss updates about breast cancer that has metastasized - spread to other parts of the body

Cancer Issues: Symptoms Signs and Side Effects

• CancerCare : Difficult Side Effects of Breast Cancer Treatment: Memory Changes, Lymphedema & Neuropathy
  

    60 minute podcast with answers from cancer specialists in these specific areas

• UCLA > News: Debilitating Cancer Fatigue
    A survey of cancer patients several years ago reported that 32% reported debilitating tiredness every day, 21% on most  days and 14% at least once a week.
  
  Twelve percent of the patients sampled in the survey actually said that they would rather
  be dead than have the severe fatigue that they were experiencing.

And these things may be of some help

• Yes, most cancer patients rank fatigue more bothersome than pain.  A download PDF is at this link

• Cancer Fatigue Treated w/Modafinil: Presented at ASCO

   
• Turmeric - Alzheimer’s and Cancer Beater
•  

  Lotsa Helping Hands  

    It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion.

 

Fatigue Fighting or Fishing in My Wallet?

I hate it when I run across something that sounds too good to be true. But today I came across a photo of Lance Armstrong talking about something called FRS healthy energy.

Coming equipped as I do with a well developed skeptic gene, I don't buy cure-alls or miracle supplements. So I wouldn't pay any attention here except the material says FRS was originally tested and refined by Harvard's "Dana Farber Cancer Institute as a fatigue fighting and general health drink."

And studies - they've at least got some numbers to back them up.

Would I be just as well off keeping up with my fruit and grain and protein awareness program? I have no idea, but the exhaustion is not going anywhere and it's getting old.

Right off the bat since they are dealing with my primary complaint and use two respected names, Dana Farber Clinic, and Lance Armstrong in the promotional materials, I cant get away from feeling that I'm going to need to know more about this.

Remember - I don't look for anything like nutrition to kill cancer cells. But IF there is anything I can do to increase my energy level, I'm so there. Missing events because I'm too wiped out to get out of bed is not my idea of acceptable.

Got ideas for me? Comment away; I'm reading, Or napping maybe, but hopefully reading,

Research Grants Study Tumors' Blood Supply & Protein

    Among the amazing people I've encountered on twitter is Ines Hegedus-Garcia, co-president of The Miami Shores Heidi Hewes Chapter of the Womans Cancer Association of The University of Miami.

@Ines has brought to my attention this small organization that does an outstanding job of involving the community and raising funds that go directly to cancer research.

Recently she sent a link to a list of the grants that they have made and although all worthwhile, one spoke to me because it talked in real terms about someone who wonders if answering one question could be the way to stop cancers like mine from growing,

Teresa Zimmers, PhD - Department of Surgery, Division of Surgical Oncology, Sylvester CCC has been awarded $50,000 towards her study focusing on the base fact that tumor growth and metastasis in many cancers depends upon the ability of the tumor to elicit a new blood supply.

Since a protein GDF-2 (or BMP-9) was absent in mice that have abnormalities in blood vessels development, this study will attempt to answer the question if administering this excess protein will inhibit tumor growth by restricting blood supply to established breast, Ovarian, and cervical cancer cells in lab mice

Sounds promising doesn't it? I'd love to be able to follow what happens. In the meantime kudos to Inez and the team that is doing the outstanding work funding this research.

Read more here

Art: My Fallback Treatment Funding

I'm researching Complementary and Alternative Medicine for cancer treatment - not in the hope that I'll ever get the insurance to pay for it but to be better informed about what might help.

So far Dana-Farber Cancer Institute's website is most helpful. It is written in patient-friendly language but also includes information for doctors to download.

Their cancer care and research is so forward thinking that their therapy center combines massage therapy, acupuncture, nutritional guidance, and other services with more traditional ones. YAY, right?

BUT - even they say

"Despite the documented benefits of some of these therapies, most insurance plans will not pay for them.

Their response is to adapt. Dana-Farber bills health insurance for what they can, offer some at no charge at all, and some have a reduced fee.

So if NIH, NCF, Dana-Farber research and hundreds of other studies show positive results to alternative therapy why won't insurance cover it? It's nuts but that's the case with my top of the line insurance too.

So I'm putting together a collection of Art pieces to sell in order to pay for it myself

Art is my answer to helping underwrite costs of my care. These are mixed media construction pieces that can be shown in shadowbox frames or worn as pins

Because as always my community is really my strongest link in my chain of care - far more vital to me than any insurance company might be. I'll be looking for your help in talking about what I'm doing and why.

What about the future? Hopefully it will include both education and legislation

We need insurance that pays for compassionate care of any sort that has been shown to boost immune function, reduce pain, and improve overall quality of life.

What of patients who can't make and market art through their online networks? What if their skills involve more physically challenging activities they just can't do when they are sick?

That doesn't seem right.

In the meantime, I've got art.