Ode To Rabbitgal and Update on Zejula

Dear Friends,

I have had to take a break from all things ovarian cancer for a little while because my bestie died in April. Her screen name was Rabbitgal, after a little pet bunny that she cherished several years ago. She and I were diagnosed just two weeks apart, each stage IIIC.  Both of us were BRCA1+. Devastating.

I believe her cell subtype was different from mine, and her course with cancer was much more difficult.  She concurrently battled a round of breast cancer and all that treatment took a huge toll on her kidneys.  When cancer returned, her body just could not tolerate treatment any more. She really suffered for awhile, it was heartbreaking. When she decided to accept the loving care of hospice everything changed and eventually she left this world in peace, surrounded by her husband and son.  

We used to meet for tea or a visit to the museum up in Seattle, on a regular basis.  We were able to share our battles and talk about how ovarian cancer impacted our lives, about how other women in the community were coping with cancer and about what we saw in the future for the treatment of cancer.  She genuinely, deeply cared about the individuals in our online discussion group.  

I miss her. I don't really have another friend like her, she was quirky, artsy, accepted me for my silliness and big ideals.  She did not persecute me for my belief in the Lord, she liked it that I had a vision for the expansion of faith based cancer retreats for women. She had a huge heart and made us all laugh with her dark sense of humor.  

Once she made me go shopping for new clothes because I always wore the same thing, HA. It was so funny! She made fun of my hair because I always let it be wild.  I kind of feel lost, she was a sister to me.  Perhaps I have survivor's guilt, which is expected.  

I always asked God to take me instead of her because she had a son, a husband, and benefited others much more than I.  She was smarter, more inquisitive and it upsets me that she is no longer here to share these gifts with us.  This feeling is managed by daily prayer, for without it, I would be deeply depressed. We don't have answers but we can have faith.

Rabbitgal documented her history in much more detail than I and I recommend that you take a look at her Friday's Corner posts.  She wanted for women and their spouses/family to use that as a guide to make their lives better when living with ovarian cancer. Go on Inspire.com and join the ovarian cancer support community, look for a member named Rabbitgal.  You will be inspired, I promise.

I miss you Rabbitgal, my dear sister and friend! May you rest in peace with God and may your son and husband be receiving the comfort of the Lord as they go through this most difficult time of grief.

On a side note:
I have started a maintenance therapy using a newly approved medication called Zejula/Niraparib. This means I have stopped the Avastin once again and will take this new medication daily.  The side effects have me concerned, only because I have a history of low counts prior to cancer. Plus nausea.....ugh ugh ugh ugh  Did I say ugh?

My gynonc is excited about Niraparib. He said that the research is very promising and that it has been a long time since we have had a new class of drugs approved for maintenance treatment. Update May 2023. Zejula was a terrible medication, I could not tolerate the myelosuppression and nausea.  


Peace and Blessings

Me on the left and Rabbitgal with her spunky hair, on the right!

Rest In Peace friend!

Colorado Passes Joint Resolution Recognizing National Ovarian Cancer Awareness Month April 11, 2017

Thank you to the Bill sponsors:

Senator

Jack Tate

Senator

Daniel Kagan

Representative

Edie Hooton

Here is the bill text. I will publish official certificate once signed by the Governor.

Regular Session Seventy-first General Assembly STATE OF COLORADO
LLS NO. R17-1111.01 Joel Moore x4497

REVISED SJR17-031

Kagan and Tate, Hooton,

SENATE SPONSORSHIP HOUSE SPONSORSHIP

Senate Committees

House Committees

SENATE JOINT RESOLUTION 17-031 CONCERNING RECOGNIZING "NATIONAL OVARIAN CANCER AWARENESS MONTH".

WHEREAS, Ovarian cancer remains the leading cause of death from gynecologic cancer among women in the United States; and
WHEREAS, "National Ovarian Cancer Awareness Month" honors all those affected by this cancer and renews our commitment to fighting an illness that takes the lives of many in the United States; and

WHEREAS, Women are often diagnosed with ovarian cancer when it is already at an advanced stage--a problem that can be attributed to a lack of effective early detection technologies and vague symptoms associated with the disease; and

WHEREAS, By learning more about risk factors, knowing the symptoms, and maintaining regular physician consultations, women have their best chance at early detection of ovarian cancer; and

WHEREAS, Through dedicated research, treatment outcomes have improved for many, and a foundation is being built for the development of evidence-based screening, which can help diagnose the disease at the earliest possible stage when the likelihood of a cure is high; now, therefore,

Be It Resolved by the Senate of the Seventy-first General Assembly of the State of Colorado, the House of Representatives concurring herein:

That we, the members of the General Assembly, hereby:

(1) Declare each September to be "National Ovarian Cancer Awareness Month" in Colorado; and

(2) Encourage the citizens of Colorado to wear teal on the first Friday of September every year in honor of ovarian cancer awareness.

Be It Further Resolved, That copies of this Joint Resolution be sent to the Colorado Ovarian Cancer Alliance; the Great West Division of the American Cancer Society; the American Cancer Society Cancer Action Network; HERA Ovarian Cancer Foundation; the Colorado Cancer Coalition; Cancer League of Colorado; the Susan Danapoli Ovarian Cancer Society; the Colorado Medical Society; the Colorado Section of the American Congress of Obstetricians and Gynecologists; and the Colorado Department of Public Health and Environment.

-2- 031 

The Trump Administration and the Environment — Heed the Science — NEJM

The Trump Administration and the Environment — Heed the Science — NEJM: Medicine and Society from The New England Journal of Medicine — The Trump Administration and the Environment — Heed the Science

"The quality of the environment is an important determinant of population health. The key stakeholder here is the public, which aspires to have a cleaner, healthier environment. Gallup poll data show continued public concern about the environment, a preference for environmental quality over economic growth, and a majority belief that climate change is a “real problem.”23 In many ways, Trump’s campaign rhetoric on the environment recalled that of Ronald Reagan in 1980. But by the time of his 1984 reelection bid, Reagan had replaced his initial EPA leadership with leaders supportive of environmental goals; their accomplishments would include removal of lead from gasoline and the first EPA funding for studies related to global climate change. The Heritage Foundation, the conservative think tank, opposed Reagan’s warming toward the EPA but argued that his initial EPA leadership had been mistaken in reducing scientific efforts and that evidence was necessary for intelligent approaches to environmental management.24 The new administration would do well to take that lesson to heart." 

As a whole-life democrat, dedicated champion for women's gynecological cancer-care needs, supporter of life from conception to natural death, as #servivorgirl, I support wholeheartedly the New England Journal of Medicine's position piece against the Trump administration's proposed EPA budget cuts.  Our President is willfully making decisions and supporting legislation that will directly hurt the environment, cost jobs and hurt the health of the people in America. He is all about the money honey.

Even if you have not experienced cancer you can understand that the environment can and often does cause some forms of cancer, as well as many other illnesses. It is safe to project that our air, our water, our food sources and sources of sustenance for wildlife will become more toxic. The increase in toxicity will increase cancer rates as well as the number of people with other environmental related illness, which will increase the burden on healthcare and increase the population of people with an inability to work full time.  This will hurt our future, our children and our children's children.

It will ultimately cost more to deal with the consequences of Trump's EPA recommendations and his goal of saving money in the budget will all be for not.

Please share this article with your friends, especially those who do not believe in climate change.  They need to see that Trump's administration is making a serious mistake.

Thank you,
Servivorgirl

GOP Health Care Proposal Does Not Support Life

Text from report completed by "The Congressional Budget Office"

"Later, following additional changes to subsidies for insurance purchased in the nongroup market and to the Medicaid program, the increase in the number of uninsured people relative to the number under current law would rise to 21 million in 2020 and then to 24 million in 2026. The reductions in insurance coverage between 2018 and 2026 would stem in large part from changes in Medicaid enrollment—because some states would discontinue their expansion of eligibility, some states that would have expanded eligibility in the future would choose not to do so, and per-enrollee spending in the program would be capped. In 2026, an estimated 52 million people would be uninsured, compared with 28 million who would lack insurance that year under current law."

In case you haven't heard, the GOP plan to replace the Affordable Care Act is a disaster.  I don't think the citizens of this country voted for a government that would reduce the number of people covered for health insurance.  We need everyone covered under an affordable, quality plan.  I personally support a Single Payer System.

Please contact your local US Representatives and let them know your opinion on this very important issue.

As a Whole-Life Democrat I view their changes to be anti-life and pro-corporation/pro-CEO. Republicans claim to be Pro-Life, but in this instance they fail massively. For example, within the provisions, CEOs of pharmaceutical companies will get to write off their incomes thusly placing themselves on corporate welfare.  Tax breaks benefitting other companies in the health care industry do not directly benefit patients but rather go back to the companies relying on their "good will" to pass along the savings.  

I don't know about you but when was the last time a CEO passed the company savings onto their end-users.  This profit driven healthcare system has to go, in my opinion. 

It would be wiser to simply improve the ACA to lower the premiums and remove some of the barriers that prevent health providers from participating in the ACA.  My dream of a single payer system may never come true but I can live with simply renovating the existing Obamacare plan to make it better for patients, providers and insurance companies.  


Here is a link to the CBO report.  https://www.cbo.gov/publication/52486

Here is are links to contact your US Representatives and voice your opinion:

https://www.senate.gov/general/contact_information/senators_cfm.cfm

http://www.house.gov/representatives/


PS:  On the mend from my prophylactic bilateral mastectomy.  I can't believe how much pain I am still have though..ha.  I want to share a thorough post on the results of my pathology as well as my view on being pro-active when BRCA mutations are concerned.  I think I dodged a bullet. God was nudging me and I am so glad that I listened to Him.

Peace and Blessings,
Denise Archuleta

Upcoming Surgery and Interesting INFO on BRCA Migrations To Southern Colorado

Breast Cancer Avoidance

In 2012 as I was preparing for a consultation with a breast cancer surgeon for a prophylactic bilateral mastectomy (PBM), my ovarian cancer returned. Due to my recurrence the option of preventative surgery was taken off the table.

I remember at the time my mom had done some research on the BRCA migration within the Ashkenazi Jew population, noting that there was a pocket of people in Southern Colorado/Northern New Mexico carrying the mutation.  I am linking that article along with a few other articles on this fascinating research.  

I recently was told that our grandmother on my paternal side was of Ashkenazi Jewish heritage, which confirms my dearly departed mom's hunch that my gene was inherited on that side of my family.   Now to offer respect to people of the Jewish heritage, I am not exactly sure if our ancestry is actually Ashkenazi or Sephardic, as this is a whole new thing for me to absorb, but there are articles reflecting both populations in terms of the BRCA 1/2 mutation migrating to southern Colorado.

Here is an excerpt from the article in the Smithsonian: http://www.smithsonianmag.com/science-nature/the-secret-jews-of-san-luis-valley-11765512/

"When Wright was told that the mutation was characteristic of Jewish people, she recalled a magazine article about the secret Jews of New Mexico. It was well known that during the late Middle Ages the Jews of Spain were forced to convert to Catholicism. According to a considerable body of scholarship, some of the conversos maintained their faith in secret. After Judaism was outlawed in Spain in 1492 and Jews were expelled, some of those who stayed took their beliefs further underground. The exiles went as far as the New World."

My mom used to tell me that grandma had maintained some rituals that were thought to be Jewish, but could not recall what they were exactly. I am desperate to find out. Those rituals were what made my mom curious as to the heritage of my father's mother, whom was otherwise a spanish Catholic.  

At the bottom of this post I will share a few

interesting links on the subject.  

Now that I have a window of opportunity for surgery once again, I am scheduled for a PBM  this February.  My wonderful gynonc was very supportive and successfully facilitated the process.  With warning that the breast surgeon may want to convince me otherwise, I met with her and defended my position.  Understandably breast surgeons are careful to be certain that patients are emotionally ready to undertake such a drastic surgery as opposed to surveillance (annual breast MRI/MAMMOGRAM).  I have been under surveillance since 2010 or 2011, not exactly sure, and I am tired of it.  

I just don’t want to have to deal with a second cancer and the surveillance is starting to get depressing and burdensome.  It is very expensive and the worry is not completely addressed.  The breast surgeon did say that if I stayed on surveillance, breast cancer should be caught in an early stage, but early stage is too many stages.  I feel good about my decision, and because I did want this in 2012, confidence about this choice is strong.  I am grateful beyond measure that insurance will cover the procedure.

Secondly it is important to discuss genetic testing.  In 2010 my test was completed by Myriad Genetics, whereby which pre-approval and coverage for such a test was hard to come by.  Today things are different and there are a greater number of testing options available.  Thanks to a support group via Colorado Ovarian Cancer Alliance I was informed about a new test by Myriad called HRD testing.  This test can better predict the ability of parp-inhibitors to effectively treat cancer in women with a BRCA1/2 mutation.  

"By predicting response to PARP inhibitors, myChoice HRD can help physicians select the appropriate therapy for their patients. Both a positive and a negative HRD result can help drive treatment decisions. An HRD positive result indicates the patient is more likely to benefit from treatment with PARP inhibitors such as olaparib and rucaparib, while an HRD negative result indicates that the patient is less likely to respond to PARP inhibitors, and can be spared the time and toxicity associated with an ineffective treatment. myChoice HRD seeks to offer physicians the ability to personalize treatment plans for patients."  Myriad Genectics

My Choice HRD

"Jewish Ancestry In the San Luis Valley"

"Lethal Gene That Emerged In Ancient Palestine"

"The Next Exocus? New Mexico's Crypto-Jews Seek Liberation"

Facingourrisk.org

Peace and an Abundance of Blessings