March To A Million

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Join us in helping our National Team Salesforce.com in their March To A Million this year!

In 2015 Salesforce raised an amazing $563,763 making them the #5 National Light The Night Team overall. Their team goal for 2016 is to raise $1,000,000 and if the team hits their goal, their CEO Marc Benioff, will personally match this amount making their total fundraising efforts 2 MILLION dollars which could potentially make them the #2  National Light The Night Team.

Please watch this amazing video from Salesforce.com – Click Here

The Leukemia & Lymphoma Society’s Light The Night Walk funds  life-saving research and support for people battling cancer.  Friends, families and co-workers form fundraising teams and millions of consumers help by donating at retail outlets.  These efforts culminate in inspirational, memorable evening walks in nearly two hundred communities each fall across North America.

The Leukemia & Lymphoma Society (LLS) funded research aims at helping all blood cancer patients live longer, healthier lives.  We will continue to support research through our  innovative and integrated funding programs, until every patient has a safe and effective  therapy.  Currently LLS:

  • Supports research programs in the U.S., Canada, and seven   other countries.
  • Provides services including family support groups, free seminars, direct patient financial aid and co-pay assistance.
  • Educates through our Information Resource Center.
  • Advocates to policy makers at all levels of government.

Come Join Us at our Light The Night Walks this year!  Register Here

 

Beat AML initiative

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“(As of today,) our website, lls.org, now features more information about acute myeloid leukemia (AML) and LLS’s priority Beat AML initiative.  LLS is leading the offensive against AML, which has not had a change in the standard of care in 40 years and remains one of the most lethal cancers. But we are making significant progress!  LLS had the vision to make a “down payment” for patients with AML in 2009 by partnering with Celator Pharmaceuticals to advance CPX-351, an innovative formulation of two existing therapies, which recently outperformed standard therapy in a Phase 3 clinical trial. This investment has the potential to pay off significantly as the first new treatment in 40 years for patients diagnosed with AML.

Now, through our Beat AML initiative, LLS has convened an unprecedented collaboration of renowned academic researchers, pharmaceutical companies, genomics experts and government, to bring to bear all of our combined resources to develop more effective, precisely targeted treatments for patients diagnosed with AML.”

  • Per Dr. Lou DeGennaro, PhD

 

Also check out these links below to learn more from The Leukemia & Lymphoma Society’s Beat AML Initiative:
https://www.lls.org/beat-aml
http://www.lls.org/content/what-is-beat-aml

Significant Advance for Hodgkin Lymphoma Patients

SIGNIFICANT ADVANCE FOR HODGKIN LYMPHOMA PATIENTS
By Andrea Greif | May, 2016
See original article

The Food & Drug Administration’s accelerated approval of an immunotherapy for patients with Hodgkin lymphoma who have failed other treatments is a positive development for patients who face a very poor prognosis.

While Hodgkin lymphoma is now considered one of the most curable forms of cancer – with a more than 86 percent five-year survival rate overall – those patients who relapse after treatment have a much reduced chance of survival.

FDA’s approval of nivolumab (Opdivo®), marks the first approval of this particular approach to therapy for a blood cancer. Nivolumab has previously been approved, either as a single agent or as a combination therapy, for a number of solid tumor cancers, including several types of metastatic melanoma; metastatic non-small cell lung cancer; and renal cell carcinoma.

Nivolumab is among a class of drugs known as immune checkpoint inhibitors. The drug targets a protein called PD1 that prevents the immune system from doing its job. By inhibiting PD1, the immune system’s “brakes” are released harnessing body’s own ability to fight the cancer.

FDA based its approval on Phase 1 and 2 clinical trials that showed favorable overall response rates for these patients – 65 percent.

LLS has supported researchers whose work has shown that inhibiting these immune checkpoint proteins is an effective approach to therapy, and is currently funding several researchers investigating PD1 and PD-L1 inhibitors for other types of lymphomas, including B-cell follicular lymphoma and diffuse large B-cell lymphoma.

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The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

Life After for the ‘Lost Generation.’

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“You learn quickly that cancer is an inhospitable house guest: It shows up when you’re least prepared and leaves your place ransacked with no money for a maid.” – Andrew McMahon stated in his patient-advice column for the US News on October 26, 2015.

While we continue to improve treatments and lifespans of those touched by cancer, there is one “lost generation,” that continues to look for more outlets and more efficient treatment plans and therapies and even facilities to complete their journey after diagnosis. The adolescent and young adults are in quite the in between when it comes to these medical advances. Many times doctors and hospitals either place these patients in facilities with children much younger than themselves, or quite the opposite, in facilities with patients sometimes 20 years their senior. It makes for the process to be just that much more grueling on the young cancer fighter.

Many times people who are not directly affected by cancer(s), don’t see the exhausting journey a cancer patient and/or survivor must go through. The entire process can put a large toll on a person’s emotions, body, finances and even relationships, friends, families and significant others alike. Besides physical setbacks, such as feeling “older,” not having enough energy as you once did or even scars, or weight change, this generation can also be struck with financial burdens due to insufficient insurances/job benefits and even high student loans. Not only are we asking this youth to come out with a successful cancer eliminating procedure, but we are now pushing them into the real world with many other burdens placed on heavy shoulders.

Andrew McMahon, now in his early-thirties is a 10-year leukemia survivor and an influential singer-songwriter. Some would know him from former projects such as Jack’s Mannequin and Something Corporate or his recent solo project, Andrew McMahon in the Wilderness. Through McMahon’s cancer treatment he was placed in a facility with others while beyond his own years. Getting the support and understanding therapy options that were offered around him didn’t connect to his youth and emotions he was feeling. The place in his life that he was currently experiencing was entirely different than the other patients around him. While going through his own treatments he could see how this “lost generation” needed a voice to advocate and show what was needed most, support.

McMahon has since started a  charitable foundation called Dear Jack Foundation (dearjackfoundation.com) that supports and advocates for the adolescents and young adults diagnosed with cancer.

amm_wilderness_bg2Andrew McMahon, photo shoot for his Andrew McMahon in the Wilderness project.

The best way to help is be an advocate for those who don’t have a voice. Be a support system for those who just need some assistant to get their voice heard. And those of us who aren’t completing cancer treatments can just be patient, be understanding, but importantly just be there for our loved ones.

Knowles, Kimarie. “Young Adults: Coping with Life After Cancer.” Smithl. Leukemia & Lymphoma Society, Apr. 2016. Web. 29 Apr. 2016. <http://www.lls.org/blog/young-adults-coping-with-life-after-cancer>.

McMahon, Andrew. “Singer Andrew McMahon on the ‘Lost Generation’ of Young Adult Cancer Patients.” U.S News and World Report. U.S News and World Report, 26 Oct. 2015. Web. 29 Apr. 2016. <http://health.usnews.com/health-news/patient-advice/articles/2015/10/26/singer-andrew-mcmahon-on-the-lost-generation-of-young-adult-cancer-patients>.

“I have a heart like a motor, and I can take more than you.”

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“I have a heart like a motor, and I can take more than you.” – Gerber, Max S. Introduction. My Heart vs. the Real World: Children with Heart Disease, in Photographs & Interviews. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory, 2008. 2. Print.

Cardiac protection in youth cancer patients is something that many have focused their trials on for awhile now. Pediatric cardiologist Gonzalo Wallis, MD, from Charlotte North Carolina has been working on a new trial testing the effects of Dexrazoxane, also known as Zinecard or Totect, can have on protecting these young hearts while they are undergoing chemotherapy sessions.

Dexrazoxane is a cardioprotective drug that can minimize doxorubicin during chemotherapy treatments. The hope is that is can also minimize cardiac failure later on after the treatments have been successful in these children’s lives.

This study at the Carolinas HealthCare System’s Sanger Heart & Vascular Institute has been rather small, leading to minimal results thus far. However, they would love to grow the size of these trials as well as see the results in twenty to thirty years when these children have grown and lived out many more years of their lives after treatment.

 

Feel free to watch this video of Gonzalo Wallis, MD explain further…
http://www.medpagetoday.com/Cardiology/Prevention/56700

My Story: True Meaning

I will never forget the phone ringing that night and my doctor’s voice on the other end asking me to put my husband on the line because she had some difficult news.  I heard the word leukemia and I heard her say I needed to come to her office in the morning.

Then, all the air left the room.  I couldn’t breathe.  I couldn’t think.  Did she just say I had leukemia?  Am I going to die?  What is happening?  I’m only 46.  My head was spinning.  When I was able to focus I saw my youngest daughter, Elyssa, standing in the room crying.  All the questions running through my head stopped.  I stopped crying, hugged her, and looked into her eyes and told her everything was going to be ok.

The next morning my doctor told me that I had Chronic Lymphocytic Leukemia.  She set everything in motion for me to see an oncologist for care and further testing.  She tried to reassure me by telling me this type of blood cancer is slow growing and I likely won’t need treatment until I am much older.  My husband and mum seemed reassured.  It didn’t make me feel any better, but hearing that I wasn’t going to die tomorrow … I’ll take it.

My first appointment with the oncologist was mostly lots of labs and lots of reassurance that I wasn’t going to need to worry about this for a very long time.  She said the plan is called “watchful waiting.”  I remember thinking to myself that she left out one of the “w’s” – the one for “worrying.”  It didn’t sound imminent; however, I hadn’t totally bought in yet.

My next appointments were not as reassuring.  My lab results indicated I had several positive “markers” for the aggressive form of this leukemia and I needed to go to Dana Farber.  I was so scared and so incredibly lucky that Dana Farber wasn’t too far away.  Not that distance really mattered.  I could see on my husband’s face that he would take me anywhere I needed to go.

The past year has been a roller coaster for me.  “Don’t worry you won’t need treatment for years.”  “Oh wait, you are going to need treatment sooner than we thought.”

Go to Boston.  Wait again.  “We’re not sure if your ER visits for swelling in your throat are related to the leukemia.”  “No, wait, we think it is related.”

Having ongoing difficulty swallowing?  “Carry these Epi pens with you at all times, just in case.”  “Oh, take these meds, too.  Your ‘numbers’ have doubled already.”  “You need treatment.”  “Wait, you need to get into a clinical trial.”

Wait.  Wait.  Wait.

I couldn’t just wait.  I was scared.  I was worried.  My family, friends, and colleagues were worried.  I needed to do something.

I already knew about the Leukemia Lymphoma Society.  Being the fourth one on my mother’s side to be diagnosed with Leukemia, I had already made many donations over the years hoping that it would help my cousins.  Now, I needed the help.

One of the first things I saw on their website was information on the “Light the Night” events.  I immediately signed up for the 5k walk in Nashua.  Wow, this already felt much better than worrying!  Now I just needed a fundraising goal, a team name, T-shirts, and a team.

This was going to be more difficult than I thought since I had not told many people about my diagnosis.  But, I went ahead and entered a lofty goal of raising $300, asked my family to be my team, and ordered a few shirts.  My son, Josh, suggested the team name “Chafing the Dream.”  Perfect.  My daughter, Audrey, went on social media to spread the word that we were raising money for LLS.

What happened next filled me with so much love and hope.  My team grew. Donations came in from so many supportive people.  I watched my neighbor’s young niece walk up to the booth at the walk and donate money from her piggy bank.  All of it.  All $85 of it.

I walked the 5k that night surrounded by loving supportive people in my life.  I walked every step.  Me, with arthritic knees that hurt on a good day, who is tired every day now, who is overweight, and who is completely out of shape.  I did it.  And, we raised $5,000!

That day I felt such power from the love and support of my family and friends.  They love and support me every day … I’ll take it.  It makes all the difference on this journey.

At my next appointment I told my oncologist about our team, about our walk, and about raising $5,000.  She stopped what she was doing, stood back, and told me that the money we raised for LLS was going to help finish research on a new promising drug for CLL.  That was in October 2013.

In February of 2014 the FDA approved inbrutinib, a promising new treatment for CLL.  I am currently waiting to start treatment in a clinical trial at Dana Farber….with hope.

True meaning.

-Written by Martha Clark. Nashua Light The Night team captain, mother, wife, and currently undergoing treatment for CLL.

Sparks of Inspiration – submit your photos for Blood Cancer Awareness Month!

INFINITY SUPPORTS BLOOD CANCER AWARENESS MONTH WITH LAUNCH OF SPARKS OF INSPIRATION, A CAMPAIGN TO HONOR PEOPLE AFFECTED BY BLOOD CANCER

Infinity Pharmaceuticals, Inc. is observing National Blood Cancer Awareness Month, joining patients, healthcare providers and patient organizations in raising public awareness of blood cancers and the need for continued research for novel treatment options. In support of patients and their loved ones, Infinity is launching the Sparks of Inspiration campaign. Throughout the month of September, Infinity encourages the submission of stories along with photos or illustrations to honor friends, family members and loved ones affected by blood cancer. For each submission received, Infinity will make a donation of $10 to The Leukemia & Lymphoma Society (LLS), the world’s largest voluntary health organization dedicated to blood cancers.

To learn more about Sparks of Inspiration and submit your tribute, please visit www.infi.com. (Submissions will be accepted from September 3, 2013, through September 30, 2013.)

“We are grateful for the support from Infinity, which highlights our shared goal of advancing new treatment options for patients affected by blood cancers,” said John Walter, president and CEO of LLS. “Blood Cancer Awareness Month is the right platform to create a sense of urgency about the need to continue investing in lifesaving treatments and cures. As there are no means of prevention of or early detection for most blood cancers, we must focus on cures.”

“Infinity is committed to discovering and developing new medicines for patients with difficult-to-treat conditions, including blood cancers,” commented Pedro Santabarbara, M.D., Ph.D. chief medical officer at Infinity. “Through this campaign, we are honoring the courage and strength of patients with blood cancers and their families. We are pleased to support the Leukemia & Lymphoma Society’s mission of finding cures for blood cancers and improving the quality of life for patients and families.”

About the Development of IPI-145 for the Treatment of Blood Cancers

Infinity is developing IPI-145, a potent, oral inhibitor of phosphoinositide-3-kinase (PI3K)-delta and PI3K-gamma, for the treatment of certain blood cancers.

“Early Phase 1 data of IPI-145 has shown encouraging signs of clinical activity across a broad range of blood cancers. I am excited to be involved in ongoing trials of IPI-145 and look forward to further evaluation of this investigational drug,” said Ian Flinn, M.D., Ph.D., director, hematologic malignancies program, Sarah Cannon Research Institute, and an investigator for these clinical studies of IPI-145. “New targeted agents in development, such as IPI-145, have the potential not only to expand therapeutic options for patients but also to reduce or delay the need for chemotherapy.”

The company is currently enrolling patients in a Phase 2 study (ClinicalTrials.gov Identifier NCT01882803) designed to evaluate the safety and efficacy of its lead product candidate, IPI-145, for the treatment of refractory indolent non-Hodgkin lymphoma (iNHL). Patients enrolled in this study must have progressed within six months of receiving their last therapy. Additionally, a Phase 1b investigator-sponsored trial of IPI-145 in patients with B-cell NHL, chronic lymphocytic leukemia (CLL) and T-cell lymphoma in combination with rituximab (a monoclonal antibody therapy), bendamustine (a chemotherapy) or both rituximab and bendamustine is also open for enrollment (NCT01871675).