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Ms. J. Lynn Orenstein
Hello, and thanks so much for taking the time to visit this website!
Recurrent, inoperable, metastatic, Endometrial Cancer is doing its best to shorten my life. And I'm doing everything in my power to make sure it doesn't succeed. The predominant form of Uterine Cancer, Endometrial Cancer affects the uterine lining. Unlike many other cancers its incidence is steeply rising. Incredibly, research for the treatment of this disease is woefully underfunded. Unlike breast and ovarian cancers, Endometrial Cancer does not have a high profile celebrity champion or multiple nationwide 501(c)(3)s. Therefore, I haveto be my own celebrity (or "celebrity in my own mind") and ask you, my friends and colleagues, to consider donating via this website to help accelerate research into drugs that will make this a manageable disease for me and for thousands of other women who are in the fight of our lives.
First, I'll tell you my personal story and then we'll talk about the shocking lack of funding for this disease.
See Dr. Makker with Doreen during treatment to the right.
RETURN BOUT WITH THE ENEMY
As many of you know, in October 2009, I was first diagnosed with cancer. I was treated with extensive surgery: a complete hysterectomy and a resection of 15 lymph nodes followed by 30 rounds of pelvic radiation. My surgeon declared, "We got everything. This isn't coming back." I was even told that I had been "over treated."
I had just celebrated my fifth anniversary of being "cancer free" when out of nowhere it was back. And this time it meant business, rapidly taking up residence in some very valuable real estate throughout my body. A CT scan showed multiple tumors of varying sizes in my pelvis, colon, liver, lungs and peritoneum. I had previously been treated at another hospital but this time I turned to Memorial Sloan Kettering Cancer Center with its impressive and compassionate gynecological oncology staff. As it happened, my oldest stepdaughter, Kelly, was being treated there for a rare sarcoma (I'm thrilled to say that she is in remission now!). We often found ourselves getting our drug infusions on the same day. If you think I'm tough, imagine my husband, Tom, who had lost his first wife to cervical cancer, shuttling between chemotherapy suites to spend time with his daughter and his wife. That's one strong guy!
What I have is not curable at this time, thus, the name of the game is finding drugs that will control tumor growth with acceptable side effects so that the disease can be successfully managed until that "magic drug" is discovered. When first diagnosed, of course I went on the internet to look at the mortality statistics. I won't repeat them here; they are too awful. Thanks to my doctors, my family and friends, my faith and a very determined will to survive, I am handily beating them. And the characteristics of my particular cancer may allow that to continue.
I started on two platinum based chemotherapy drugs a few days before Christmas, 2014. I can't remember too much about the holidays or the 6 months that followed, except for constant fatigue and the gradual loss of sensation in both feet which sometimes occurs with these drugs. I retired my high heels and have learned to love flats with a good cross strap to hold them on firmly!
However, one cancer wasn't enough. A second, completely unrelated cancer in a salivary gland was discovered two months into my treatment. I'm happy to say that it was successfully removed by Dr. Snehal G. Patel at the completion of my allotted rounds of platinum drugs. I felt like the luckiest woman alive. But it was a painful and sobering ordeal.
While the first line of chemo treatments left me bald as a billiard ball, the second line drug, appropriately called "the Red Devil", turned my skin a strange shade of orange. I don't know what was worse: looking like an android, or John Boehner's kid sister. However, I was able to resume working, which was and is my lifeline. At meetings I explained away my odd skin tone as a bad experience with a spray tanner.
As is the case with chemotherapy for recurrent disease, Red Devil worked for a while and then lost its effectiveness. By February 2016, I was in serious need of something new. My amazing oncologist, Dr. Vicky Makker didn't let me down. In looking closer at the genetic properties of my tumor she paired two drugs that hadn't been used before in an endometrial setting. One is a targeted therapy and the other, a hormonal agent. We were thrilled to see almost immediate positive results. I am still on these drugs more than three years later.
But the multiple tumors in my liver, some of which are quite large, pose the greatest threat to my survival. Dr. Makker brought in her colleague, Dr. Joseph P. Erinjeri of the Interventional Radiology Department, to cauterize the blood vessels feeding each tumor, large and small. The expectation was that starved of blood supply the tumors would die. I have had three of these procedures and so far all have been successful. The tumors grow back, so the procedure will be repeated as much as necessary. In the meantime, Dr. Makker will have valuable time to find alternative drugs that will contain the disease and prolong my life.
I'm very grateful that this procedure and the current round of drug therapy are allowing me to lead a "near normal" life. I am able to work, often times participating by phone rather than attending meetings in other cities and continue, with my partner, to guide the strategy of our firm. I serve as Treasurer of my co-op Board. And I maintain my abiding interest in investing in art. But I am very aware of how ephemeral it all is unless more funding becomes available to find a permanent solution to managing this disease.
LACK OF FUNDING > INADEQUATE RESEARCH > LITTLE CHANCE FOR "BREAKTHROUGHS"
According to the American Cancer Society, Endometrial Cancer is one of the most commonly diagnosed cancers in the U.S.:
|Type||Estimated New Cases||Estimated Deaths|
Source: American Cancer Society, 2016
Despite the fact that it is among the most commonly diagnosed cancers, funding remains at the bottom of the list, especially when compared to other cancers exclusively or predominantly affecting women:
Source: National Cancer Institute
There is a degree of complacency in the medical community about Endometrial Cancer because it is so easily cured in its earliest stages. That may be part of the funding conundrum. But even Stage II may not be early enough for a cure. It certainly wasn't in my case. And Endometrial Cancer is on the rise, as are mortality rates. It is a hard cancer to detect. There isn't an exam like a mammogram, or a PAP, that signals its presence. In a post-menopausal woman, its symptoms can easily be mistaken for the inevitable indignities of aging.
Clearly, all cancers deserve the highest possible degree of funding. I'm not suggesting that money be taken away from one and given to another. I'm simply saying that the funding pie has to get bigger.
DOREEN NEEDS DRUGS!!!
While the tumors in my liver are under control, the others have to be managed. After my current drug therapy loses its effectiveness or becomes too toxic, it appears that immunotherapy, on its own or in combination with other drugs, may be the next stop for me. While they have received tremendous press lately, drugs such as Opdiva and Keytruda work well for some cancers like certain forms of melanoma and brain cancer. For others, it's a mixed bag. For me, it is wholly experimental.
In conclusion, this has been quite a journey, and not how I imagined spending my sixth decade! Over the past 4 years, I have been hospitalized 6 times, sampled 6 different drugs, received radiation, had 3surgical procedures and endured innumerable scans. I am punching back…hard. I have a lot to live for. And I have the best team of doctors imaginable (check them out via the links below) who are smart, dedicated and thoroughly vested in my survival. Your donation will go DIRECTLY to them.
I hope I can count on your support in my battle. You can donate anonymously, or if you can't give money, simply keep me in your thoughts and prayers. We also can accept matching corporate grants by emailing email@example.com. I look forward to seeing you to say "thank you" in person. God bless you and stay healthy! Good health is a gift you should never take for granted.
MY AMAZING TEAM
Dr. Vicky Makker
Dr. Joseph P. Erinjeri
Dr. Jedd D. Wolchok