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Ovarian Cancer Survivor Wages Fight of Her Life

nancibee's picture
nancibee
Posts: 50
Joined: Sep 2012

 

 

http://shine.yahoo.com/healthy-living/ovarian-cancer-survivor-wages-fight-of-her-life-205123518.html

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

I think the article is about CSN user AndreaLivesHere who posted a few days ago.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013
Your Peach sister here.  I posted this on the Uterine chat board but thought you all would like this as well.  I pray we all get the treatment we NEED to fight another day.
 
 

Living With Cancer: A Rainbow Coalition

Everyone recognizes the pink ribbon of breast cancer, but fewer know the color of testicular (orchid), uterine (peach), lung (white), pancreatic (purple), or head and neck (burgundy/ivory) cancers. Given current research and treatment, as well as a commitment to equity, is it time to imagine a rainbow coalition?

Breast cancer activists have brilliantly organized to heighten public awareness of a disease that threatens too many women. Support groups, regional conferences, runs, T-shirts, memoirs and photographs raise money for research and help individual women confront a dire diagnosis.

In a post on the Foundation for Women’s Cancer Web site, writer Tranette Ledford worries that she has “the wrong color of cancer.” More than 90,000 American women are diagnosed annually with “below the belt” cancers, but they do not get the attention, information and care they need.

“When we look at cancer through rose colored glasses, we save thousands of lives,” Ms. Ledford wrote. “We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer.”

Even though TV ads tell us about erectile dysfunction and prostate cancer (light blue), are we leery of publicly discussing “lady parts”? I take this to be a serious question about the debilitating silence surrounding gynecological cancers.

I wonder as well about colorectal cancers (dark blue) that afflict men as well as women. Any disease involving excremental matters seems to remain unspeakable for the most part. It is difficult to ascertain the color of anal cancer, but I believe it is purple/green. Also marginalized in representation and debate are men and women dealing with cancers that afflict smaller populations — like multiple myeloma (burgundy), carcinoid cancer (zebra) or thyroid cancer (teal/pink/blue).

American history has taught us that separate is not equal.

In the midst of these competing claims for attention and support, cancer research is undergoing a paradigm shift. We are informed that there are several quite distinct types of, say, breast cancer that must be treated differently. Just as important, a single genetic mutation can cause cancers originating in different body parts.

Today a number of drugs work on multiple cancers. Gleevec has been used on leukemia (orange), but also on gastrointestinal stromal tumors (periwinkle). Avastin is effective for certain colorectal, nonsmall cell lung, brain (gray), ovarian (teal) and kidney cancers (also orange—there are only so many colors to go round). Doctors can now prolong lives by prescribing Abraxane for breast, lung and pancreatic malignancies.

Perhaps the organ of origin is less important than other factors. In this context, the balkanization of cancer identity politics seems absurd. Why should people with melanoma (black) contend against people with liver cancer (emerald green) over limited resources? Instead of haggling over a meager slice of the pie, the breast surgeon and author Dr. Susan Love has argued, we should demand a bigger pie.

Wouldn’t we have more clout banding together not only to support research into prevention, detection and cure but also to counter the exorbitant expense of treatment? The price of some of the newer drugs is sky high. Gleevec can cost $100,000 a year, Avastin $100,000 a year, Abraxane $96,000 a year.

The issue of the colors of cancer was raised by Ms. Ledford to broadcast the fact that September is National Gynecological Cancer Awareness Month (which is sometimes called National Ovarian Cancer Awareness Month). There is cause for celebration among this constituency because a new study in the journal Cancer suggests that the biomarker CA125, when used over time to monitor change, may finally provide a much needed detection tool for ovarian cancer. Currently 75 percent of those with diagnoses deal with late-stage disease and miserable mortality statistics, as I do.

On the first day of National Gynecological Cancer Awareness Month I discovered that the experimental drug extending my life has been so successful that it will be moved from a Phase 1 to a Phase 3 clinical trial. Unlike the Phase 1 trial, which studied the drug in various cancers, the Phase 3 trial will be open only to breast cancer patients. I very much hope it will help the women enlisted, but what about those excluded?

Maybe cancer research and fundraising can’t function without organ-related identifications. Pharmaceutical companies are drawn to large markets. Money is often donated by people honoring a beloved friend or relative felled by a particular form of cancer.

Important as the ribbons are, however, can their use inadvertently set advocates against one another? Without relinquishing the colors, what would it mean to support people dealing with every type of cancer? In the 21st century, children and adults with cancer are unfortunately legion.

We may have something to gain from dreaming a dream that really can come true of banding together under a symbol adopted by a number of social justice movements: the spectrum of a rainbow coalition. I would like to wear that sort of bracelet, though I have never seen one in the hospital gift shop.

This idea comes to me during National Gynecological or Ovarian Cancer Awareness Month. The ovaries are where we all come from.

 

http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?ref=health&_r=0

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

Technically lavender ribbon stands for awareness for cancer of any kind, but I have seen rainbow (multi-color) signage that from afar looks a lot like gay pride ribbons. 

Back in April there was a campaign giving out yellow daffodil pins to honor people living with any cancer, though it could have been unique to Canada Cancer Society, I'm not sure.

I'm a little confused about the ribbon color for uterine cancer awareness: according to different sources it is teal (all gyno cancers), peach or purple.

If you want a multicolor "all cancers" bracelet you can get it off www.choosehope.com

Kickin' Cancer Multi-Color WristbandRibbon Awareness Car Magnet - Support Cancer Awareness (Multicolored)

 

seatown's picture
seatown
Posts: 220
Joined: Sep 2012

Thanks for posting this article. I read the NY Times every day but somehow missed this. But I can relate. I have primary peritoneal cancer, which I've been told is "rare" or "very rare." My niece the oncology nurse had never seen it; my oncologist's assistant said in 16 yrs she had never seen PRIMARY peritoneal cancer, though she had seen peritoneal cancer metastisized from other abdominal cancers. Peritoneal cancer treatment follows the exact same protocol as ovarian. But I don't even know if my cancer is considered gynocological--after all, men have peritoneums too, & they get peritoneal cancer. My surgeon said I might as well tell people I have ovarian cancer; most people have never heard of peritoneal cancer, which references seem to say is inevitably fatal sooner or later.

Anyway--I've often felt I have a sort of "orphan cancer." It's hard to find up-to-date info on the web, and there seem to be few clinical trials. I applaud all the organizers have done to publicize breast cancer, especially since it affects so many women. I remember the days when it was only spoken of in hushed tones. I'm old enough to remember when Betty Ford was diagnosed--in fact, I hosted her at my place of employment on her first trip post-surgery. But I wish more could be done to raise awareness of rarer cancers. Maybe it's something I should get busy on.

Meantime, I'm celebrating. 48 hrs ago, I was declared N.E.D. after a year+ of treatment.

Details at www.CaringBridge.org/visit/CaroleSeaton

Thanks again for sharing.

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

I read your last post on CaringBridge. You look and sound wonderful!

Paint Savannah / Beaufort red and buy every designer handbag that you fancy. You deserve it.

I don't think that peritoneal cancer even has a ribbon, it's too rare. I never knew I had peritoneum till CT showed mets on it. But honestly who gives a flying f#ck about ribbons unless you've invested in a ribbon-making sweatshop in China? We're people, not a sum of our body parts and we are all in this together.

 

 

cindy333
Posts: 9
Joined: Dec 2013

So happy your were declared NED Carole!!!  BIG LOVE!

Cindy

Rosamond M
Posts: 86
Joined: Apr 2013

Great news, Seatown,I am so happy for you!! I,also,

have Primary Peritoneal Cancer and have been told

it is quite rare.

On the matter of colours  "CANCER SUCKS"

whatever colour is assigned to it!!

I read this quote somewhere and think it is

most appropriate and so very true.

 

tealme
Posts: 3
Joined: Sep 2013

http://www.bizjournals.com/sanfrancisco/blog/biotech/2013/09/biomarin-ovarian-cancer-andrea-sloan.html?page=all

 

"Right now, (the tumor is) a pea-sized tumor. I want (BioMarin) to give me the medicine before it grows into a watermelon."

 

I feel this article gives a more balanced view of the issue. It explains more about how clinical trials work, and how the issue is not so black and white. What caught my eye though, is her quote from the article. Previous accounts of her situation led me to believe that her cancer was widespread. According to what she says in this article, her recurrence is a pea sized tumor. There are so many of us on various ovca boards who are in far worse shape. I am not sure why she should get the drug first.

Just for clarification, I have no connections to Biomarin whatsoever. I had never even heard of them before the articles about Andrea started coming out in the news.  I am just one of many women with stage 3 ovarian cancer who would love a chance at this drug also. I am actually concerned that BioMarin will discontinue all research into BMN 673, due to all this controversy.

 

 

 

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

For Andrea it's no longer about following the rules, it's about survival and I fully understand her. I would rather live a couple more years than have "She Followed Procedures" engraved on my tumbstone. Like her I'm 45 years old, BRCA1+ and OVCA stage 3C and I tried everything to get into PARP inhibitors trials but didn't qualify. I won't stop trying, though I wish I had Andrea's chutzpah and PR experience. And who cares about the current size of her tumors? It's not like if she doesn't get the drug, they will give it to you or to me. All that Biomarin had to do to protect themselves was to sign her on a non-disclosure waiver and not include her data into their trial statistics. Their legal decided to play hardball, ran into someone tougher and louder than they anticipated and now can't go back without losing face.

I doubt that Biomarin will discontinue their trial because one photogenic woman is plastering her pictures all over the internet. If they do, it's because the drug was unsafe, didn't work like they hoped or they ran out of money, which is highly unlikely (BMRN stock on Nasdaq doubled from $40 to $80 in the last 12 months).

 

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

Read about it here http://agbeat.com/business-marketing/public-relations/biomarin-ceo-email-meltdown/ and here http://www.youtube.com/watch?v=i2uXKcyF01s and here http://medcitynews.com/2013/10/cancer-patients-social-media-crusade-brings-compassionate-use-victory-now/

I want to update CSN Ovarian Board on Andrea's very loud and very public altercation with BioMarin Pharmaceutical in August-September 2013 over her compassionate access to their new PARP inhibitor (BMN673). If this story didn't hit so close to home for many of us it would be a perfect fairy tale featuring a damsel in distress (recurrent ovarian cancer patient Andrea Sloan), an army of her supporters (Andi's Army), a rude and selfish ogre (BioMarin), an evil PR troll (hiding under names tealwoman, tealme, tealperson, realperson, Sasha Freddy) and a White Knight (another drug company who agreed to supply Andrea with the drug). It also had an element of humor when BioMarin CEO hit "Reply All" button by mistake and leaked internal emails where ovca patient was called "a spoiled petulant brat". One would hope that the executive making $6.2 mln /year compensation off potential cancer drugs would be more respectful and computer-savvy.

"White Knight" - the benefactor chose to remain anonymous. It's one of 4 other PARP manufacturers: AstraZeneca (Olaparib), Tesaro (Niraparib), Clovis Oncology (Rucaparib) or AbbVie (Veliparib). If I had to guess - based on the dosage (400mg twice daily) quoted by Andrea's oncologist Dr. Charles Levenback http://www.youtube.com/watch?v=hSutN9nafNQ she is taking Olaparib.

Andrea is still advocating 'compassionate use reform' http://www.youtube.com/watch?v=VXb9bhLSIY0

I sincerely hope that the new drug is working for her and she stays in remission for a very long time.

scatsm's picture
scatsm
Posts: 249
Joined: Apr 2013

If you didn't get into a parp trial, what are you doing about your recurrence, if you don't mind my asking?

Susan

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

My latest CT scan showed slow tumor growth and small amount of ascites, CA125 = 119. According to the radiologist it is not enough for a core-needle biopsy. Without 3 cores of fresh tumor sample I can't get into Clovis Rucaparib trial. Doctor refused to do open biopsy that I suggested. There are no other PARP trials in Canada. Avastin and Doxil (Caelyx) are not available in Canada either. ONC suggested same old Taxol / Carboplatin, I refused. On January 7th I will repeat the CT scan and he will again evaluate if biopsy is possible. If by then Rucaparib trial is still recruiting and has not maxed out the number of enrolled BRCA-positive women, I will try again. In early 2014 another Imunogen trial will open up and I will try for it.

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Forgive my ignorance, I'm not government savie, but could you get into a trial in Israel?  My doctor mentioned the new work they are doing there for ovarian uterine.  Didn't know if you had duel citizenship or what.  Just curious and thank you again for the condolences!  Best, Debra    

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

Hi Debra, my mom had the same idea. I looked into it and decided against it.

Unlike Canada where healthcare is free for all, Israel has four "sick funds" (medical networks). Even though I'm technically still an Israel citizen I haven't paid premiums there in 19 years and I don't think that if I went back they will insure me with pre-existing condition. So everything would be out of pocket. I also looked into their currently recruiting ovarian cancer trials and the choice is even poorer than in Canada. If you discount trials for maintenance (I have recurrence) and for platinum-resistant cancer (I'm platinum-sensitive), there are only 2 trials left (NCT01357161 and NCT01846611), both of them chemo randomized blind with a placebo. I can have placebo for free at home without travel, lodging and medical expenses.

Alexandra's picture
Alexandra
Posts: 1225
Joined: Jul 2012

 

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ConnieSW's picture
ConnieSW
Posts: 591
Joined: Jun 2012

Thank you for telling us, Alexandra.

scatsm's picture
scatsm
Posts: 249
Joined: Apr 2013

Every time we lose a teal sister it hurts.

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