Monthly Archives: April 2013

The MSKCC Research on My Husband’s Cancer

I’ve received details about the research we’re supporting at Memorial Sloan Kettering. I had thought it would exclusively study my husband’s type of cancer (Papillary Type 2), but they are studying his type of cancer along with several other rare types of kidney cancer. The rationale is that these types of cancer are SO rare, that it would be difficult to get a pharmaceutical company to support a treatment for just one of them. The hope is that there will be a common connection between several of these cancers, widening the pool of possible patients. I’ve copied below the complete proposal. It’s pretty impressive, exciting stuff. I asked them for a few more details, and here’s what else I know. It DEFINITELY includes my husband’s type of cancer. (Unfortunately, since his tumor was removed at another hospital, they don’t have his specific tumor to study, which seriously bummed me out.) However, they have 100 tumors that they are going to gene sequence. Three of those tumors are papillary type 2 and seven others have not yet been identified, but they suspect are my husband’s type of cancer. I do not know the exact status of where they are in this research, or how much more money they need. (I guess that would be helpful to know!)

I wanted to let those of you know who have already donated what we’re supporting. If you haven’t donated yet, but were considering it, this could help you with your decision. It’s really happening, and you’ll understand why I keep reliving my story of losing and then finding our rental car key in Hawaii. It’s the same idea.

It’s impossible to guarantee that this research will help my husband. But, it’s the best thing we know to do. I believe in God and science (most days, both).

We donate, and we pray, and we enjoy today. Thank you for your prayers and support. If you look at our donation page, you’ll see that we’ve raised about $64,000 for MSKCC. That’s not entirely accurate because it doesn’t include the checks that people have mailed in. The real total is closer to $70,000, which is amazing!! What we give matters. Even small donations matter. You matter. I matter. My husband matters. The 30 people in his clinical trial matter, and all others with rare kidney cancer (and all cancer!)

Think of your donation as buying lottery tickets for those who just found out they won the “anti-lottery.” Cancer or misfortune could strike any of us at any time. Pay it forward. Pray for a cure.

MEMORIAL SLOAN-KETTERING CANCER CENTER

KIDNEY CANCER RESEARCH OVERVIEW

OVERVIEW

Memorial Sloan-Kettering Cancer Center (MSK) is the world’s oldest and largest private institution devoted to cancer. MSK’s mission is to carry out extraordinary patient care, leading-edge research, and transformative educational programs. Since our founding in 1884, MSK has played a major leadership role in defining the standard of care for people affected by cancer. This is a particularly exciting time for us as we look forward to building upon our groundbreaking research to provide more effective and safer treatments for our patients; to define strategies to help people reduce the risk of developing cancers they might be genetically predisposed to develop; and ultimately, to prevent the disease from occurring at all.

RARE KIDNEY CANCER RESEARCH AT MSK

Under the leadership of Dr. Robert Motzer, MSK is a leader in treating rare kidney cancers. We have been the predominant source of the data and publications that are driving kidney cancer understanding and treatment worldwide. MSK has made rare cancer research a top institutional priority, committing critically-needed resources and recruiting high-profile investigators such as Dr. James Hsieh, a world-renowned physician-scientist and medical oncologist focusing on kidney cancer.

Using our basic knowledge of rare kidney cancer, our goal is to gain insight into all forms of rare kidney cancer through long-term research and development, including papillary (or chromophil) carcinoma. As you know, this is a rare type of kidney cancer that can develop as individual or multiple tumors appearing either in the same kidney or in both kidneys. There are two types of papillary cancers, type 1 and type 2. Type 1 is more common and usually grows slowly. Type 2 papillary tumors represent more than one category of disease but, as a group, are more aggressive and may follow an unpredictable growth pattern.

Our cancer research efforts have all benefited from the sequencing of the human genome, which has provided valuable insights into the way genes function in normal tissue, and what goes wrong in cancer. Our increased understanding of cancer at the molecular level is what has yielded remarkable new technologies, diagnostic procedures and new drug discoveries that are resulting in more effective therapies and clinical interventions.

MSK has established an efficient infrastructure to quickly absorb work related to rare kidney cancer. This includes resources such as a tumor bank and the High-Throughput Screening Facility, an exceptional, industry-grade resource that can test thousands of chemical compounds quickly against specific cancer targets.

Biobanks are crucial to our research endeavors in two ways. First, they provide inputs for the gene-based and protein-based studies that are involved in developing targeted therapies and improved diagnostics. Second, combined with patient records, they provide an invaluable resource from which to undertake correlative studies on patient outcomes.

MSKCC’s leadership in rare kidney cancer research stems from collecting specimens of the majority of kidney cancer patients seen at MSK since 1992. This resource is now the largest and most comprehensive in the world – allowing investigators to ask crucial research questions about history, staging, pathologic features, prognostic indicators, and identification of high risk patients.

Based on experience, we expect our sequence efforts to find many mutations that have occurred during the formation of the cancer, from which only some will be important in promoting cancerous growth. Those important mutations will usually occur frequently in the disease. Sequencing tumor and normal DNA from as many patients as possible will allow us to prioritize mutations that occur in patients and validate them further.

Once a specific molecular mutation has been identified as meaningful in a cancer progression we can attempt to target the mutation with existing or new therapies. Clinical trials are the testing ground for treatment effectiveness and toxicity of such therapies. Of course, clinical trials require several layers of approvals and take a long time, often requiring studies on necessity, efficacy, risks and safety before being ready to present the study to the institution’s own Internal Review Board (IRB). All of this takes place before we can present the study to the Food and Drug Administration (FDA) for approval.

Clinical trials are particularly difficult to organize for rare conditions such as rare kidney cancers because multiple clinical institutions need to coordinate in order to enroll a sufficient number of patients. It is far simpler to plan the scientific, logistical, regulatory and statistical elements of a clinical trial within one hospital or cooperative group. Fortunately, in large part due to a generous donor like you, over the past year Dr. Hsieh has embarked on building our collaboration with all of the relevant institutions world-wide to enable this work.

CONCLUSION

The R. F. Williams Papillary Type 2 Kidney Cancer Research Fund will help to expedite the development of targeted therapies in order to provide more individual-based treatment methods. Thank you for your generous commitment to kidney cancer research at MSK.

Robert Motzer, M.D. is a board-certified medical oncologist with more than 20 years experience dedicated to improving the lives of patients with genitourinary tumors. His primary area of expertise is kidney cancer (renal cell carcinoma) and testicular cancer (germ-cell tumor). In addition to providing patients with the highest standard of medical care, he has led more than 50 clinical trials in patients with kidney cancer and testicular cancer, including national and international multicenter clinical trials.

Dr. Motzer’s research has helped to identify three targeted anti-angiogenesis drugs — sunitinib (Sutent®), temsirolimus (Torisel™), and everolimus (Afinitor®) — as effective first- or second-line treatments for patients with advanced kidney cancer. He has also helped to develop a system to aid in the prediction of treatment outcomes for patients taking medications for advanced kidney cancer; this risk system is widely applied by physicians internationally to direct the care of patients.

On a national level, he works to improve the quality and delivery of cancer care for individuals diagnosed with kidney cancer and testicular cancer through my healthcare policy and advocacy activities. He is the chair of the National Comprehensive Care Network Kidney Cancer and Testicular Cancer Guidelines Panel.

James Hsieh, M.D., Ph.D., is a renowned physician-scientist and medical oncologist who focuses on kidney cancer. Dr. Hsieh received his Ph.D. at the Johns Hopkins University and before joining the MSKCC he held faculty positions at Harvard Medical School and Washington University School of Medicine. With Dr. Motzer, they founded the MSKCC translational kidney cancer research program (TKCRP). After its inception in the early 2011, TKCRP has rapidly expanded its research agenda to include generation of new kidney cancer cell lines, establish human in mouse kidney cancer models, develop novel treatment strategy, and initiate cell death mechanism-based clinical trials. Their mission is to decode molecular bases underlying treatment response and cancer metastasis, and develop personalized treatment regimens for kidney cancer patients.

The Hsieh laboratory has made landmark findings in cancer biology. Dr. Hsieh and his team revealed that the oncogene MLL is regulated by site-specific protein processing, leading to purification of the responsible enzyme, which they named “Taspase1”. This discovery uncovered a novel class of enzymes. Taspase1 cleaves its substrates to enable fundamental biological events that dictate cell fate, cell cycle, and stem and cancer cell biology. Recent studies in the Hsieh laboratory suggests that Taspase1 can serve as a novel anti-cancer target, which leads to a joint venture among top medical institutes and NCI for the development of Taspase1 inhibitors for cancer therapy.

We Found the Key

20110814(085808)I haven’t written in awhile. To be honest, it’s been a long, dark winter. Everything I wrote seemed too dismal to share. I’ve been struggling, so I’ve been silent.

Yet there was one story I’ve been telling myself again and again. In August 2011, Robert and I went to Hawaii for two weeks to celebrate his law school graduation (Kauai and the Big Island). We spent a day at Waipio Valley, an ancient, sacred valley of kings. Most people don’t go into the valley. Its private land, but one of our friends knows a local man. He said if he came with us, then we could go.

Robert drove our rental car, a four wheel drive Jeep Cherokee, down the mile long, one-way dirt road with no guard rail, multiple hair pin curves, and a 45% grade. It was essentially straight down. When we reached the bottom of the mountain, we ventured through two and a half miles of lush wilderness, over gravelly paths and rushing streams. Through palm trees, bananas groves, bright orchids and fragrant plumeria. Several wild horses approached our vehicle until finally we reached a waterfall at the back of the valley.

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There were a handful of non-Hawaiian folks from Kona, a beach town about two hours away, swimming in the natural pool beneath the waterfall. Our friend’s friend, “the local,” encouraged us to climb the waterfall. He said there was a second tier with a natural Olympic sized pool created by an even larger waterfall above.

I gave it a valiant effort, but it was too hard for me. I was frightened of falling. So, I told Robert that I’d wait below and they should go ahead. He grabbed my hand to help me down, and as he did so, our rental car key—the one with the big sticker that said “Do not get wet or I won’t work” slipped out of his pocket into the murky depths below the cascading water.

His face turned ashen. This was not a clear pool. The water was dark green and cloudy. Nothing beneath the surface was visible. It would be miraculous if we found the key, and even if we did, we weren’t sure if the soggy chip inside it would still work.

The Kona crowd started hooting and laughing. “Hahaha! You’re screwed! You will never find that key! It’s impossible! People lose things forever in this water! Don’t even try!”

My friend and I held hands and began to pray. I prayed to God, and she prayed to God and to Pele, the Hawaiian volcano goddess, so that all bases would be covered. Robert kept diving down, again and again, swimming deep under the water, making small circles around where he thought it dropped.

“Get ready to walk back to Kona!” our nay-sayers continued.

I imagined trekking through the rough roads, rivers, and banana groves, practically barefoot in my plastic flip flops that looked more like Barbie doll shoes. We’d have to retrace our steps, literally over rivers and a mountain, drive two hours and then spend several hundred dollars on a new car key. Such a terrible ending to an incredible adventure.

Robert repeated his dive under the surface, over and over for 15 minutes. My friend and I kept praying. Our audience kept laughing.

Finally Robert came up gasping for breath, triumphant. “I found it!”

Thank you, God.

The laughter stopped. “Wow, man, that’s pretty cool!”

“Yeah, good for you, I didn’t think you guys had a prayer!”

“Well, let’s just see if the key works,” I said nervously.

It did.

We drove off to the black sand beach, built a fire, watched the moon rise and cooked steaks on a stick over the open flames.

I remind myself over and over: Against all odds, we found the key. Maybe it’s a sign that some researcher will find an unexpected answer, a key if you will, to unlock this cancer.

Who knows! Anything is possible with prayer, determination and maybe a little luck.

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Please continue to pray for my husband’s healing, the 30 other people in his clinical trial, and that the researchers will find the key to help them all.