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Translocation renal cell carcinoma (tRCC) is a rare subtype of renal cell carcinoma occurring in less than 5 percent of patients. Initially found primarily in children, incidence of tRCC found in adults is rising.

Because it is so rare, research to identify the best treatments for tRCC patients is severely lacking.  The Translocation RCC Research Initiative (TRRI) is working to change that!  Laura Loughlin, KCCure Director of Patient Engagement, had the opportunity to speak with Dr. James Geller, a tRCC expert at Cincinnati Children’s Hospital and leader of the TRRI.

What is the TRRI?

The TRRI is a global team of doctors and researchers dedicated to tRCC research to find new and better treatments and improve patient outcomes.  Their work includes a registry study, clinical and biological testing, tumor modeling, and novel drug testing all focused specifically on tRCC.

The Goals

  1. Registry– By filling a critical gap and prospectively collecting data from both pediatric and adult patient populations, we will be better able to characterize clinical behavior and treatment for patients with TFE RCC.
  2. Tumor Model Development– Tumor models are an excellent tool used to study the causes of cancers and an instrument for testing new drugs.
  3. Drug Discovery– Through the use of drug screens with developed tumor models, and investigation into the biology of TFE RCC, the TRRI consortium is invested in identifying novel drug therapies for patients with TFE RCC.

One of the most exciting things about the work being done is that it brings patients and doctors together to help advance research.

How can you contribute?

If you’ve been diagnosed with tRCC, enroll in the TRRI registry.  Sharing your information today with the registry is a way to make a difference in research for this rare subtype of RCC.  The registry is open to patients of all ages.

  • If you are a tRCC patient, or the parent of child with tRCC, contact the registry at 844-RCC-TRRI or TRRI@cchmc.org to schedule a call to discuss the TRRI Registry and enrollment (this phone call will take approximately 15-30 minutes)
  • Prior to the scheduled call, you will receive a copy of the informed consent by email. This form would be signed at the end of the call if you choose to proceed. You may use this link to see a copy of the consent prior to contacting the registry.
  • During the call, registry staff will review the consent with you and answer any questions you may have. If you wish to proceed with participating, at the end of the call, instructions will be provided on how to properly fill out and sign the consent form and how to return it to the registry.
  • Upon receiving your signed informed consent document, registry staff will sign it and return a completed copy to you for your records. This officially enrolls you in the registry.
  • The registry team will work with your physicians (or your child’s), and with you, to gather the appropriate medical information for the registry.
  • You will have the option to donate leftover tissue from any scheduled procedures. The registry staff will do all the work to coordinate tissue donations.

Information fuels research – signup to update the Registry today!!

Have you been diagnosed with tRCC? Learn more about the different types of renal cell carcinoma and how you can connect with others that share the same diagnosis.

You can also learn about a currently enrolling clinical trial specifically for tRCC patients through our non-clear cell clinical trial chart.

KCCure thanks Dr. James Geller for sharing the work being done by the Translocation RCC Research Initiative.  We look forward to sharing updates on the research being done and making a difference in the treatment of tRCC patients.

The post Translocation Renal Cell Carcinoma (tRCC) Research Initiative appeared first on KCCure.

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KCCure and Kidney Cancer Canada join forces to bring patients and caregivers A DAY OF KIDNEY CANCER TALK on World Kidney Cancer Day!

A DAY OF KIDNEY CANCER TALK is 45-minute “talk” sessions scheduled throughout the day with kidney cancer specialists in Canada, United States and Europe.

We’ll be featuring 45 minute sessions throughout the day with experts from the U.S. and Canada. No presentations, no PowerPoint – just you, other members of the RCC community and RCC experts!

View the full schedule here.

You can join any of the talks at any of the times scheduled during the day with the link details below:

Please join my meeting from your computer, tablet or smartphone. 
https://global.gotomeeting.com/join/292203261 

You can also dial in using your phone. 

United States (Toll Free): 1 866 899 4679 
Canada (Toll Free): 1 888 299 1889 
U.S. / Canada: +1 (647) 497-9373 

Access Code: 292-203-261 

New to GoToMeeting? Get the app now and be ready when your first meeting starts:  https://global.gotomeeting.com/install/292203261 

United States (Toll Free): 1 866 899 4679

The post A Day of Kidney Cancer Talk – June 20th – World Kidney Cancer Day appeared first on KCCure.

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In April 2019 the Food and Drug Administration (FDA) approved Keytruda (pembrolizumab) in combination with Inlyta (axitinib) for the frontline treatment of patients with advanced renal cell carcinoma (RCC).  We’re grateful to brave patients like Carol who participated in a clinical trial and helped make this treatment a reality for advanced RCC patients.  

I have been retired for more than 5 years.  I have always been a person with a lot of energy.  In fact, I used to teach 3rd grade in an all boys school.  Energy needed there!

In the fall of 2016, I began to have terrible night sweats, changing many times a night, and was just exhausted.  I went to my primary doctor who knows I’m not a complainer.  She could tell my lymph nodes were swollen and began doing tests.

At first, lymphoma was suspected.  I had a biopsy right after Thanksgiving 2016, thanks to a friend who had connections to the surgeon.  My primary doctor was interested in getting things done quickly, but the oncology department at the cancer center did not seem so.  My friend was able to move me up.  The biopsy showed RCC.

The renal oncologist we met with several weeks later, and yes, I was going nuts, offered me treatment with Sutent and sent me home with a stack of information about drugs, etc.

Luckily, close friends in the medical field urged me to get a second opinion.  One of my friends, who is a pathologist, noted that my pathology report was incomplete.  I took their advice and decided to go to Fox Chase Comprehensive Cancer Center.

We got an appointment at Fox Chase almost immediately and met Dr. Zibelman.  I recognized his energy and enthusiasm and I was delighted.  He had the pathology report and right away noted the missing information.  He said they would request the slides from the other hospital and that if the pathology showed I had clear cell RCC, that I might qualify for a promising clinical trial combining immunotherapy with a targeted treatment.  I was impressed with Fox Chase and the fact that they wanted to get on this immediately.

The good news was that I did have some clear cell and I was randomized into the treatment arm of the Keytruda in combination with Inlyta trial.  I started Inlyta and Keytruda within a week or two.

For the first month or so, I was fine.  After that I began to have the hand, foot, and mouth sores.  Dr. Zibelman lowered my dosage and they began to heal.  It took about 6 months from the time of beginning treatment until the blisters/burns went away.  I have learned to manage the symptoms when they return and Doc Z lets me determine when I need a break. I also had some muscle aches, which may have been from the Keytruda.  I have had hoarseness for months and am about to see an ENT about it.  The treatment has also not been kind to my thyroid.  They put me on Synthroid for that, but that dosage has been lowered recently.  The Inlyta raises blood pressure, but that is well controlled with drugs.  Also, I have lost most of my ability to taste sweet, which is annoying, but can be dealt with.

When we began, my lymph nodes were swollen right up into my neck.  That’s where the biopsy was taken.  At two + years in, my kidney tumor has shrunk about 33%.  The lymph nodes in my neck and under my arms can no longer be felt.  My energy is pretty good, although not what it used to be.  I haven’t restricted activities.

The Keytruda part of the trial finished at the two year mark and now I am just on Inlyta.  Each scan shows a tiny bit of shrinkage, but that is at least in the right direction.  If I backslide, they will bring back the Keytruda.

My biggest recommendations are get a second opinion and listen to your body.

The post Voice of Kidney Cancer – Carol’s Story appeared first on KCCure.

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NIH Trial – HERV-E TCR Transduced Autologous T Cells in People with Metastatic Clear Cell Kidney Cancer.   

Good News!  Since I last shared news of this exciting clear cell kidney cancer trial it has continued to actively recruit.  If you are interested there are still spots available.  Eligibility criteria include:

  • Being at least 18,
  • having clear cell RCC,
  • measurable disease progression in the last six months;
  • and being positive for HLA-A 11:01.

HLA-A 11:01 is only present in a subset of clear cell RCC patients.  The NIH, at no charge, can arrange testing for you if you are interested in finding out if you are positive for HLA-A 11:01.    Additionally, there are some eligibility requirements related to prior treatments.

The trial involves a 2 to 3 week stay at the NIH and a caregiver is asked to stay with you for these weeks.   If this sounds like a fit for you in your treatment plan, contact your oncologist. They can work with you to evaluate the trial and reach out to the NIH.

Anyone who fits the eligibility and is selected for an NIH trial can participate, regardless of where you live or your insurance status.  All costs for treatment are covered by the NIH and in many cases, travel costs are also covered.

You can learn more about this trial and get information to share with your doctor here.

If you are interested in seeing information on all trials available for kidney cancer, you can search for them at www.clinicaltrials.gov.

Want to just see trials that are open in kidney cancer at the NIH? Try refining your search to locations in Bethesda, Maryland!

On behalf of KCCure and kidney cancer patients around the world, I want to express my thanks to Dr. Childs and Julie Erb-Alvarez at the NIH, for keeping us up to date on this trial.   Knowing the NIH is hard at work looking for cures leaves me very optimistic for the future.

Laura Loughlin is Director of Patient Engagement for KCCure. She is a stage 4 kidney cancer survivor from Boston, MA

The post NIH Clear Cell Kidney Cancer Trial appeared first on KCCure.

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Never give up!

I was diagnosed April 2016 with bilateral stage 4 RCC at 63 years old. Zero symptoms so it was a bit of a surprise. Two surgeries – a full nephrectomy and a partial – by then one tumor was basketball sized, at Ochsner in New Orleans. Luckily I was able to retire and get full disability and went onto oral medication (Cabometyx).

At this point I had not really realized that this is a manageable chronic disease and figured that I’d be dead in a year or two, so I traveled. Bought a small travel trailer and spent most of 2017 exploring the Rocky Mountains alone, hiking, fishing, camping, photographing and driving the back roads.

I was born and raised in England so this opportunity to explore the American West was a dream come true– in fact , after spending the winter back in South Louisiana I spent most of 2018 doing the same thing, mostly in Colorado, almost all in wilderness areas, dirt roads, boon-docking, National Forest camps, lots of elk, moose and bears.

Fortunately I had minimal side effects from the meds and they kept the tumors stable for two years. I did the blood tests at various places while traveling and flew home for scans every 3 months. I’ve moved on to an immunotherapy now and still doing well.

If possible I’ll be back on the road this year.

Thanks John for sharing your story.

The post Voice of Kidney Cancer – John Coulthard appeared first on KCCure.

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Washington, DC, ——– – The Kidney Cancer Research Alliance(KCCure) applauds the approval of yet another treatment for advanced renal cell carcinoma by the U.S. Food and Drug Administration (FDA). The latest approved therapy combines EMD Serono’s Avelumab (BAVENCIO) with Pfizer’s axitinib (INLYTA) as first-line treatment for patients with advanced renal cell carcinoma (RCC). 

Axitinib, a tyrosine kinase inhibitor, was approved in 2012 as monotherapy for the treatment of second-line renal cell carcinoma. Avelumab is a checkpoint inhibitor that blocks the PD-L1 pathway. This is the second approved treatment combining axitinib with a checkpoint inhibitor.

The JAVELIN Renal 101 trial investigated the combination of avelumab and axitinib in comparison to sunitinib (SUTENT) in previously untreated metastatic kidney cancer patients. Patients in the combination arm experienced a median progression free survival of 13.8 months compared with 8.4 months in the control arm. Median overall survival for the study has not yet been reached.

 “This combination therapy is an important new treatment option for patients with advanced RCC,” said Eric Jonasch, M.D. Department of Genitourinary Medical Oncology, MDAnderson Cancer Center and KCCure Scientific Advisory Board Member, “Our thanks go out to the brave patients who participated and enrolled in clinical trials, making this treatment a reality for all.” 

Renal Cell Carcinoma is the deadliest of all urological malignancies, with over 70,000 new cases diagnosed annually and over 14,000 deaths each year.  Advances in treatment for metastatic RCC have increased dramatically over the last decade, but overall survival rates continue to be low.

 “We’re thrilled to see so many exciting new advances in the field,” said Dena Battle, President of KCCure. “new treatments mean new hope for kidney cancer patients and their families.”

About KCCure: The Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to eliminating suffering and death due to kidney cancer through increased funding to accelerate research that will lead to a cure for all patients and prevent future kidney cancer diagnoses.

For more information about treatment options available for advanced kidney cancer, click here.

CONTACT:

###

Dena Battle 

202-494-5261

Dena@kccure.org

Follow us @kccure

The post KCCURE WELCOMES APPROVAL OF ADDITIONAL COMBINATION THERAPY FOR ADVANCED RENAL CELL CARCINOMA appeared first on KCCure.

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My kidney cancer journey was preceded by breast cancer, which was caught early through a routine mammogram. After two surgeries I returned to work in January 2010, the same month I celebrated my 60th birthday and my cancer-free status. We had learned much, including how to advocate for ourselves, ask for help and support and to celebrate every bit of good news.

The thrill didn’t last long. One month after my return to work I felt dreadfully sick and vomited throughout the night. Strangely, over a period of several days, a beautiful ruby-red gem sometimes appeared in the toilet bowl. I realized later that this this was a blood clot. A visit to my PCP and a urine test showed evidence of hematuria, or blood in my urine, and an ultrasound rapidly followed. An appointment was made with a local urologist. With dizzying speed we were told that there was a large tumor in my left kidney that could not be safely surgically removed at the nearby hospital in Portland, Maine.

At the Lahey Clinic near Boston I had an open nephrectomy in March 2010. The pathology was Clear Cell Renal Carcinoma. The surgery was considered successful, and we planned to follow up with regular CT scans nearer home with a local oncologist.

Six months later the CT scan showed nodules in my lungs. What had felt like solid ground under our feet was rapidly slipping away.

We returned to Boston for consults, and an oncologist friend, suggested that we consider the possibility of IL2 treatment. Following that lead we saw Dr. Michael Atkins at Beth Israel Deaconess Medical Center (BIDMC). Dr. Atkins warned that this was not something to undertake lightly. In fact two oncologists advised us against IL2. At that time there were some, but not many FDA approved treatments for Kidney Cancer. The approach was to treat as a chronic disease, not to reach a cure. We were told that High Dose Interleukin 2 had the potential to provide a Durable Complete Response, which means a future in which no disease could be detected. However, this was only attained infrequently, and it was impossible to predict who was likely to benefit from the treatment. Additionally, there is severe toxicity associated with IL2.

The treatment takes a toll, both on the patient and on caregivers. Highly trained nurses administer IL2 in an in-patient setting over several weeks. Side effects can be dramatic and have a sudden onset, but the nursing staff is alert and knows how to counteract them. I spent almost four weeks as an inpatient, weeks spread over a five-month period.

Good fortune shone on us. Regular scans, which bring along the now familiar ”scanxiety”, have not detected any new tumors. Dr. Atkins left BIDMC and I am now under the care of Dr. David McDermott. I have had no further treatment for kidney cancer. Many things have changed in the world of kidney cancer since my own diagnosis in 2010. Now IL2 is sometimes used in combination with other medications. There are new decisions and dilemmas for patients and their families. I would always encourage patients to learn about their disease, (one good source is through SmartPatients,) ask questions and seek more than one opinion, especially when dealing with a disease that is not one of the common forms of cancer, or one like kidney cancer, where treatments are still being developed and improved.

KCCure thanks Caroline for sharing her kidney cancer story and her success with IL2 treatment.

The post Voice of Kidney Cancer – Caroline Sample appeared first on KCCure.

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Bryn is a member of KCCure’s Benign Renal Mass Community.  He shares his story of being diagnosed with kidney cancer, only to learn following surgery that his masses were benign oncocytoma. Many patients struggle with anxiety and guilt after such an experience. KCCure is committed to supporting these patients and working to better identify gaps in care for newly diagnosed patients preparing for surgery.

I am Bryn Jones a retired police officer in the UK. Born in 1963, I led a healthy lifestyle and am in general good health.

In December 2008 I had an excision of a small lump/tumour (sarcoma) from my left shoulder. The procedure was carried out by a plastic surgeon, the rationale was that it was believed to be a lipoma.

From 2009 when I was informed that the lump was in fact a sarcoma, I had the usual check ups every 6 months. Nothing had altered other than a lymph node on the left side of my neck was, and still is swollen. In November 2012 I underwent a series of MRI and CT scans though merely precautionary due to the swollen lymph node. The consultant I saw in 2012 informed me that a sarcoma may affect the liver as well as extremities though they do not metastasize and it was very rare. I thought nothing more would come of it.

Early 2013 I was contacted by the plastic surgeon who ordered the scans,  and I was informed the scan had found masses to liver, both kidneys and spine. The opinion of those that reviewed the scans was that the liver and spine masses appeared to be haemangioma and nothing of concern whilst the masses on the kidneys were to be explored further.

In April 2013 I was called to visit a consultant urologist who introduced me to a MacMillan nurse. This was a little awkward as I had no symptoms of anything being out of place. So my meeting went well though with some apprehension when the consultant informed me I would likely lose my left kidney which would be removed via open nephrectomy.

At the end of May 2013 I underwent surgery and informed only a partial nephrectomy was required and losing only a 1/3 of the kidney. Histology revealed the tumour to have been an oncocytoma. So relief all around of course and surgery to the right kidney may not be required. Nevertheless having had another MRI scan I underwent robotic (DaVinci) partial nephtectomy to the right kidney with several smaller tumours being excised which again were found to be oncocytoma.

Since that time I was discharged from the urologist and to date I have had no symptoms of kidney related issues other than frothy urine. I had an ultrasound scan a couple of weeks ago and results sent to my GP whose advice was – If I have further symptoms of kidney stones to get back in touch and make an appointment. To my knowledge I have never had symptoms of kidney stones so I await a further appointment with my GP on April 1st to discuss.

Having initially been given the news I had kidney cancer (of course it wasn’t) I have suffered no ill health other than the recovery.  Though the feeling of guilt has not gone away, joining a support network has helped.

Best regards Bryn

The post Voice of Kidney Cancer – Bryn Jones appeared first on KCCure.

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Below is a tweet from Adam Stern – physician, kidney cancer survivor, and now best selling author of Shrunk MD – a book of cartoons that he recently published.

“I’m reaching out to anyone who has influenced me over the months since my own diagnosis and offering to send a copy to help raise money for @kcCURE.”

When Adam came to us with the idea of selling his book as a fundraising effort for KCCure – I was thrilled and grateful. When he raised over $5,000 in a week for kidney cancer research – I was amazed.

His tweet this morning reminded me about how crucial the kidney cancer community is – and how important it is to help connect patients with one another.

“I’m reaching out to anyone who has influenced me over the months since my own diagnosis…”

I’ll still never forget the first person who reached out to me after my husband was diagnosed. It was Liz Lewis. A fellow caregiver. I found her on Facebook. She sent me a note on Easter and told me that we were going to be ok. She connected me with hundreds of other people who were in the same boat. And I was no longer alone.

Cancer turns our lives upside down. And the friends and family that we rely on most are often the people who are least equipped to help in that moment of crisis. They don’t know what to say – often because they’re struggling with their own grief and fear.

Connecting with others dealing with the same diagnosis is a lifeline. 

Who influenced you? Who sent out that first line of rescue? If you know what I’m talking about – will you do me a favor?

  • Share the story about who influenced you and thank them!  
  • Support Adam and buy a copy of Shrunk MD. Even better? Buy it at Amazon Smile and designate KCCure – Kidney Cancer Research Alliance as your charity – you’ll be funding research twice!
  • Or simply make a donation via the website or Facebook honoring the amazing communities of support that exist for kidney cancer patients.

Together – We Are Not So Alone.  Together – We Can Cure Kidney Cancer.

The post Thank a Friend and Help Fund Research! appeared first on KCCure.

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Washington, DC, ——– – The Kidney Cancer Research Alliance (KCCure) welcomes the U.S. Food and Drug Administration (FDA) decision to approve pembrolizumab (KEYTRUDA) in combination with axitinib (INLYTA) as first-line treatment for patients with advanced renal cell carcinoma (RCC).  

Pembrolizumab is an anti-PD-1 checkpoint inhibitor that helps the immune system detect and fight tumors cells. Axitinib is an anti-angiogenic targeted therapy that inhibits the growth of tumors. This is the first approval of an immunotherapy agent used in combination with a targeted therapy for the treatment of advanced kidney cancer. Axitinib as monotherapy is already approved for patients who have progressed on one line of therapy.

The decision by the FDA was based on the results from the KEYNOTE-426 trial, which investigated the combination of pembrolizumab and axitinib in comparison to sunitinib (SUTENT) in previously untreated metastatic kidney cancer patients. Patients in the combination arm experienced prolonged overall survival compared to patients in the control arm.  

“What’s exciting about this combination is that it shows an overall survival benefit for patients, regardless of their risk status,” said Dr. Hans Hammers, medical oncologist at UT Southwestern Medical Center and KCCure co-founder.  “Pembrolizumab in combination with axitinib is an important new treatment option for providers to consider for patients newly diagnosed with metastatic RCC.” 

Advances in treatment for metastatic RCC have dramatically changed the landscape for patients over the last decade and have resulted in increasing overall survival rates for the disease, which is the deadliest of all urological malignancies. 

“This therapy option will provide new hope for patients diagnosed with metastatic disease and is an important step forward in the fight against kidney cancer,” said Dena Battle, President of KCCure.  “We’re eager to share this news with patients and help educate the community about this new treatment approval.”

About KCCure: The Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to eliminating suffering and death due to kidney cancer through increased funding to accelerate research that will lead to a cure for all patients and prevent future kidney cancer diagnoses.

For more information about treatment options available for advanced kidney cancer, click here.

CONTACT:

###

Dena Battle 

202-494-5261

Dena@kccure.org

Follow us @kccure

The post KCCURE APPLAUDS FDA APPROVAL OF NEW COMBINATION THERAPY FOR ADVANCED KIDNEY CANCER appeared first on KCCure.

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