When the cancer comes back

BY GUEST BLOGGER | FEBRUARY 3, 2012

As my sister drove me to the hospital on a wintery night after my leukemia returned for the second time, I said over and over, "I'm never going to see my grandchildren. I'm never going to see my grandchildren."

I thought I was at the end of the line. I had already had three bone marrow transplants, each preceded by intensive chemotherapy, when my doctor told me that I had relapsed again.

On the night of Dec. 21, 2008, I had felt a little better after feeling sick for several days. My daughter and I were making cookies. Then I fell to the floor.

After she helped get me to bed, I took my temperature and discovered that I had a fever. I called Dr. Edwin Alyea, my physician at the Dana-Farber Cancer Institute, and he said he was sorry to tell me on the phone, but the pathology report on my latest bone marrow biopsy showed that I had relapsed.

He said he would understand if I didn't want to go through treatment again, but if I wanted to proceed, he had an idea for a new regimen.

I wanted to live. I wanted to see my three children, 16, 19 and 23, continue growing up into the wonderful adults I knew they would be.

I wanted to walk my Labrador retriever, play tennis, run a road race and return to my job as a newspaper reporter.

Dr. Alyea had said to go to the emergency room and get admitted, and then he would come see me and there would be a plan. It turns out I had pneumonia, so they had to treat that before they did anything else.

I was first diagnosed with acute myeloid leukemia in 2003 after feeling extremely tired while running a 10-kilometer road race near my home in South Hadley, Mass. Thinking I was probably anemic, not eating right or training poorly, I went to my internist. He said my blood counts were abnormal and sent me for a bone marrow biopsy. I soon learned that I had AML, a fast-moving cancer of the blood.

The "What, me?" response was pretty strong. I ate well and exercised, I didn't smoke and I was slender. But I had to accept it when, within about a week, I found myself in a bed at Boston's Brigham and Women's Hospital, about 90 miles from home. Under the care of doctors from Dana-Farber, I received three rounds of in-patient chemotherapy, with rest periods in between at home, and then my first bone marrow transplant.

It was an autologous transplant, meaning they used my own new, clean stem cells, removed after two rounds of chemotherapy and then returned to me in a rescue mission after a third and powerful round basically cleared out my bone marrow.

I was in remission, but my first Dana-Farber doctor, Daniel J. DeAngelo, told me that remission is not cure. He said that after two years you break out the Champagne, but only after five years can you use the word cure.

After two, then three-and-a-half years passed and normalcy wrapped its arms around me, I got another shock. The leukemia was back. I learned this just after I played in, and won, a doubles match at a tennis tournament.

"Leukemia is curable," DeAngelo said. "We'll get you back on your feet."

"I am on my feet," I thought to myself as I left his office. And then I burst into tears.

This time I would get an allogenic transplant, with stem cells coming from a donor. After the leukemia cells are killed by chemotherapy and healthy donor cells fill your bone marrow, the donor cells patrol your body to fight off any leukemia that might try to sneak back in.

But after six months, I learned a new term, graft failure: The donor cells had packed up and left, leaving my bone marrow almost empty. The cause was uncertain, and the donor was a good match who agreed to try again. After more chemotherapy, I had transplant No. 3.

Six months later, I had that second relapse.

There were so many things to worry about that a nurse who called me Nervous Nellie told me over and over, "Don't worry, they'll figure it out." And as you will see, the incredible doctors did just that.

I had a new donor and a new chemotherapy regimen consisting of three drugs. One of them, Atgam, is made from rabbit serum, and the nurses called it shake and bake, which is exactly what I did while I received it intravenously.

The transplant, on Jan. 31, 2009, went smoothly, but a few weeks later, I developed a severe blood infection, went into kidney failure and lapsed into a coma. One night, it was touch and go. My ex-husband brought my daughter and told my sons to come quickly and to bring their dark suits. Dr. Alyea met with them and said that there were many things wrong with me, but they would tackle them one by one.

And somehow I struggled to the surface, confused, scared and unable to speak. My legs were swollen like tree trunks, and I needed two nurses to turn me over. The nurses, who ranged from kind and gentle to kind and commanding, helped me pull through.

I regained my voice when a nurse nicknamed Big Red asked me, "What's my name?"

"Lisa," I answered in a grainy whisper.

"Say it loud!" she said.

It took all of my strength to say, "Lisa, Lisa, Lisa!"

But from then on I could speak.

After extended sessions of dialysis, my kidneys returned to normal. I was in bed for more than a month. When I got up, slowly and needing oxygen at first just to sit on the edge of the bed, I had to learn how to walk again. Total time in the hospital: three and a half months.

Recovery has been long and slow. Because you are like a baby with no immune system, during the first year you can't go into crowded places, and when you do go anywhere, you need to wear a mask and gloves. When I got back to walking, I was so wobbly I was like a Gumby doll. One day I fell over backwards, hitting my head on the pavement and earning a trip to the emergency room.

Two years after my transplant, I met my donor, Denise. Donors come from all over the world, but in an example of one degree of separation, Denise lives in New Jersey and is in a book group with one of my friends. Like all donors, she did an incredibly generous thing.

We hugged and grew teary as I thanked her multiple times and she thanked me for giving her a chance to save a life.

Now I am pretty much back to myself, despite graft-versus-host disease, a common complication after transplant in which the "graft" recognizes the "host" as foreign and attacks it. I don't have a bad case, but I do take big handfuls of pills and visit Dana-Farber for frequent check-ups.

I watched my daughter graduate from high school and go to college. I was at my middle son's college graduation and shared my older son's joy when he told me that he gave his wonderful girlfriend an engagement ring.

I rejoined my tennis team and, with my longtime doubles partner, won my first match back, an incredible thrill. I worked back up to running, which took a while, because when I first tried, my feet felt like they were made of lead. The Saturday after Thanksgiving this year, my son and I joined some 3,000 other runners in a scenic six-mile crossrace called the Talking Turkey.

I couldn't go back to work fulltime, but I have been doing freelance writing.

I am left with this question: How do you deal with it when you know that the same bus can hit you twice? You worry that all sorts of things – mainly fatigue - can signal a relapse. I talk to myself. "Maybe you're tired because you just played two hours of tennis." Oh, right.

The passage of time helps. So does hitting the ball on the sweet spot, or doing yoga, or feeling my feet hit the ground when I run, or sitting on the couch watching TV with whichever child is home, or watching the dog lie in the sun at my feet while I write or read. I laugh a lot. Sometimes when I roll over in bed, I flash back to when I couldn't do it myself, and I am so grateful to do that simple thing that I never would have thought about before.

I try to take it one step at a time, appreciating all that I have and looking forward to the good things.

Born and raised in New York, Ronni Gordon lives in South Hadley, Mass., where she raised her three children, Ben, 26; Joe, 22; and Katie, 19. She is a graduate of Vassar College with a master's degree in journalism from Boston University. She spent most of her career in daily journalism as a features writer at the Republican, in Springfield, Mass., and has been published in The New York Times, The Philadelphia Inquirer and elsewhere. She now spends her time freelancing, writing her blog (runnerwrites.blogspot.com) and working on her tennis game.

• Two new drugs approved, one pulled from the pipeline
• Emerging treatment option for myeloma presented at hematology meeting
• The big news from the American Society of Hematology
• Studies highlight progress in lymphoma, pose more questions
• Drug approved specifically for treating myelofibrosis

An introduction to cancer: From a father and his daughter

BY GUEST BLOGGER | JANUARY 18, 2012

Silence like a cancer grows...and in this light, taking silence to task, Hannah, my 15-year old daughter and I presented an assembly this fall at her school on "The Face of Cancer." It was Hannah's tale to be told. I followed her lead. It was also the first time I really heard her full view of what she experienced during those initial calamitous days.

She has already launched the "Cancer Team" for students whose lives have been affected by cancer or who simply want to become involved in providing resources and support. She organized a walk for breast cancer for Baystate Health Foundation, Rays of Hope, bringing in nearly $4,550 with her classmates. There are now over 50 members and she is thinking of taking such an initiative national. I am sure she will. She was brave and courageous. Standing in the Chapel, before the entire school population of nearly 700 students, faculty and staff, she was proud and radiant.

We recognize that not everyone is comfortable with any of this. None of us really are. Many were moved. Some were a bit shaken. Cancer, or any disease, illness or trauma is a deeply personal, private matter. There are no "rules" for managing this sort of event. But we believe no good comes of silence when you are fighting something so deadly and devastating and if by raising the awareness and consciousness of those around us we can help demystify, encourage understanding and the need for more resources, including research and support, then all the better.

"Not everything that is faced can be changed. But nothing can be changed until it is faced."
-James Baldwin

November 7, 2011
Hannah Rose Green and Mark Richard Green
Morning Assembly
Nothfield Mount Hermon School, Mass.

Hannah: Good morning NMH. I am here today to introduce you to an amazing person, my dad. He is like me in a lot of ways; he has been my main role model since I can remember. He has a way of making friends with just a single sentence, maybe because he's always smiling, always optimistic, and constantly cracking jokes. He's also extremely active, and has more energy than any other middle aged man I've ever met. But he's not just my role model, he's also my best friend. I could never ask for a better father and friend.

Mark: There are moments in life that are completely out of our control. Some are minor disasters and others are of epic proportions. There is a particularly unstable glass shelf in our medicine cabinet, loaded with various items which from time to time comes loose, sending everything sliding and crashing to the sink below and you find yourself watching helplessly as the whole bathroom falls to pieces.

Hannah: This past summer, on a beautiful August day, the medicine cabinet fell. I came home from the pool to find my dad very sick. His eyes wouldn't focus, his speech was slurred and slow, and he couldn't walk straight. I knew something definitely was wrong when he didn't touch his dinner. He said he was having a migraine, and went to his room to sleep. A few hours later, he came to tell me he had just thrown up and that my step mom was going to take him to the hospital. "He just has heat exhaustion," my step mom assured me. She said that there was no reason for me to come, because they would probably end up waiting in the ER all night for him to get an IV stuck in his arm and sent home. So, I went to my mom's to get some sleep.

But I didn't sleep at all that at night, I was so worried about my dad. I waited all night for a text message from my step mom to tell me that my dad was fine. That message never came.

Mark: Once I arrived at the emergency room, I was given a CT scan and within 20 minutes the doctor delivered the news. I had a golf ball-size tumor and it was serious. What happened next was like riding on an awful carnival ride. The feeling of shock and bewilderment we will never forget. Was the Dr. kidding? Surely he was just kidding...

I was immediately transported by ambulance an hour north to Dartmouth Hitchcock Medical Hospital. All I recall was the muffled sounds, the darkness, the whir of the tires speeding up the highway.

Hannah: My mom delivered the news the next morning. She told me the doctors believed his illness could be attributed to something inside his head. I almost started laughing. Something in his head? I remembered a time when I was little, when my dad would stick pretzels in his nose to make me and my sister laugh. What'd he do, get pretzels lost in his brain? I thought. "Mom what are you talking about?" I asked.

She answered with a word that changed my life. A word I would hear a million times in the days to come, and a word I still think about every day, and will think about forever: "A tumor."

All I remember after that is uncontrollable crying, for hours, up until we drove up to the hospital to visit my dad, when my mom told me I needed to be strong for him. I was so scared to see him. It meant that the tumor was real and that I was not stuck in some crazy nightmare.

He was heavily medicated, because the tumor was putting pressure on his brain, causing him immense agony. He faded in and out of consciousness. When he was awake, he would vomit, cry, and ramble drunkenly about rainbows and unicorns. When he was asleep, he would curl into a crumpled ball, pale and weak.

Mark: I was stuck in a car crash which never seemed to end. I awoke, groggily, to a cacophonous riot of hospital machines, telephones, pagers, and people speaking softly and sometimes loudly, bright lights, a blur of sound and movement, and most painfully, the look of shock, fear and worry washing over my family. All I could do was think of my two daughters. I didn't want to die. Not now. I'm not ready, I thought. The pressure on my brain was expanding. I was told later I had less than a week to live before the tumor, with no room left to expand, would have herniated into my brain stem, killing me instantly.

The tears welling up in Hannah's eyes as she looked on with confusion and fear were the most devastating. I thought of Libby, away at camp, not knowing any of this. "What was happening to my dad?" Hannah seemed to be saying without even speaking.

Hannah: In the 10 hours I spent at the hospital that day, I watched my dad decline from bad to worse. He needed more medication every hour, woke up less, and became paler, more delirious, and more uncomfortable. The only part of his body that had any color was his neck, where the bleeding from his brain was pooling. I understood then that if that tumor was not removed as soon as possible, my dad would not be alive much longer. The surgery was moved to the next morning. Saying goodbye was the hardest. I begged to sleep at the hospital, but neither the doctors nor my family would allow it. I was positive that if I left, it would be the last kiss goodnight I would ever share with my father.

Mark: But, I did make it through the night, and at 6 the next morning my skull was opened up, the tumor removed, titanium screws and plates inserted, and sewn back up.

Hannah: His surgery finished with no complications, and I was rushed into the recovery room to visit him. My dad was awake and ready to party. He was cracking jokes to the staff, and to the other patients, trying to make friends and have fun.

I remember this as one of the happiest moments of my life. The trials of the past day were over, and my dad and my life were both almost back to normal. Until, a few hours later, when the doctor returned with the diagnosis of the tumor.

Mark: Stage 3 brain cancer. Anaplastic ependymoma, to be specific. An already rare cancer, it occurs over 95 percent of the time in children. Not much information for the doctors to work with. What the doctors do know is that the cancer is incurable and is a lifelong diagnosis. They said despite all efforts to radiate it, the tumor will eventually grow back, and could be operated on again, but not radiated again. There is no other treatment, save for experimental trials for which I will be eligible when the tumor returns. We didn't know when the tumor will come back. It could be in a year, it could be in 5, 10 years or more.

Hannah: The doctor hadn't even finished explaining before I was gone. I ran from the room, and cried on my mom's shoulder for a very long time. "He'll never see me graduate, never see me get a job, never walk me down the aisle, never meet his grandchildren." She didn't deny it like I wanted her to, but instead told me advice everyone should live by. "You can't live your life worrying about the future." It took me a long time to accept this, but it became easier when my dad returned home a few days later. He recovered quickly, and soon, his illness was almost forgotten.

Mark: Until several weeks later, I had a second brain surgery to remove the remnants of the tumor. At the end of this week, I will complete 33 treatments of radiation therapy to kill what they can of the cancerous tissue which remains. I will have, for the rest of my life, to monitor things with tests and MRI's. It is the emotional mountains which appear to be the steepest. Cancer is a sinister disease and will now always be lurking within.

Hannah: I was already back at NMH when my dad had the second surgery, and I felt enormous guilt for not being at home to support him. But I quickly realized that I was not alone. My story is one in over 11.7 million. The story I just told happens every day to countless families around the globe every day. In the time I've been talking, 4 people have died in US because of Cancer. And I can guarantee that every single person in this room will be affected by cancer at some point in their lifetime. And maybe some of you already have been.

This was my inspiration to start the Cancer Support Team. To support kids on campus who have been affected by cancer, and also to support cancer patients in every way we can. The cancer team has already raised almost $5,000 dollars for cancer, and this past weekend participated in a cancer walk in Greenfield.

There are a number of ways you can get involved in fighting cancer, and helping prevent any more of these stories from happening. Whether you want to commit to joining the 50 of us who are part of the cancer team, or make it a 1-time thing, there is a force in numbers.

This month, we will be selling t-shirts and also holding a haircutting event if you would like to donate your hair to cancer or even shave your head to show your support.

As most of you are aware, this month was breast cancer month. But tomorrow is the first day of November; I would like to bring attention to the most fatal cancer, lung cancer. The lung cancer color is white. Please show your support by participating in an all school white out. Thank you."

"In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life"
– Awake My Soul, Mumford and Sons

Mark R. Green, 44, lives in the small New England village of Walpole, NH with his two daughters and partner Barb as well as Aiden, the floppy standard poodle, and Molly, the diminutive but fierce Yorkshire Terrier. His sister is an editor for the National Comprehensive Cancer Network.

He was diagnosed last year with stage 3 anaplastic ependymoma brain cancer and underwent two surgeries and completed 33 radiation treatments on 11/11/11.

He counts among his many hobbies a love of music, food, literature, writing, bicycling, skiing, kayaking, fishing, canoeing, hiking and travel. His recent brain surgeries and stage 3 brain cancer diagnosis has given him additional energy to pursue with passion the need to raise awareness of all things brain cancer and cancer in general: from funding needs to helping those with few resources gain the tools they need to cope with what is surely an illness which upsets the balance of life itself. His blog is http://moosevt.wordpress.com.

[Mark Green with his daughters Hannah (left) and Elizabeth]

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• The cushion of silence
• Cancer apps

The cushion of silence

BY GUEST BLOGGER | JANUARY 17, 2012

Waiting ... more waiting.

The cushion of silence envelops all those waiting in this room marred only by the intrusion of names called, the sound of pens on paper filling out forms, a low buzz from the vending machines. There is solace in the quiet, and as I look around I wonder about all of those who are sharing this room, seeking refuge in months-old magazines and the steady ticking of time; the hushed whisper of communication barely audible. Ronnie is knee deep into a magazine. I check the date. February, 2010. No wonder it looks faded.

What brings the others to this room? My mind wanders. I spend my waiting time trying to guess. For some, there is no question. Others aren't so clear. An older gentleman and his wife. Without the tell-tale bracelet I would have never known which was the patient. They aren't smiling nor are they talking. Is it cancer? Or some other malady? They are called back, and I'll never know. An entire family surrounds a young woman in a wheelchair with a cast that encompasses the length of her leg. Another family enters and breaks the silence. The kids bounce about and there is a fit of coughing. Happily, there is a young mom-to-be with her husband by her side. They are smiling, about to embark on a journey of their own that brings back a flood of joyous memories. Their wait will end and begin with miracles.

The waiting room is difficult for me today. Time is almost standing still. I'm ready to be done with this part of my day and to go home to normal. The normal for my family that is normal to no others and yet so many others. My name is finally called, and I begin to focus on my own reason for being here. Simple enough. Ronnie squeezes my hand. He can sense my mood without sharing a syllable. This has become routine - another normal - in so many ways. We have a balance, and he somehow knows when talking will bring me to tears and silence will provide unspoken comfort. So, true to form, he sits by my side and offers what brings me that peace: a shoulder to lean on, a hand to hold and the reassurance of knowing that he's beside me.

A stent replacement is no longer considered a battle. It's just a part of the journey. The list of what ifs that have forced me to sign on the bottom line barely make us blink. There is much more in the balance than what now seems like the improbable possibilities of a procedure like this. But for some reason I'm overly emotional. Will speaking my fears make them come true? Will whispering my hopes convince the world to share my optimism?

Somewhere, someday I'll discover why my mind doesn't always let me talk in a waiting room, even when I know that just writing the words or speaking them aloud won't change anything. Until then I will be thankful for that squeeze of the hand and be content with the quiet comfort of togetherness and the cushion of silence.

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES, an organization for individuals living with metastatic liver tumors, and an advocate for C3: Colorectal Cancer Coalition.

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• Cancer apps

Emerging treatment option for myeloma presented at hematology meeting

BY GUEST BLOGGER | JANUARY 6, 2012

CURE invited Diane Gambill, PhD, a CURE advisory board member, to share her thoughts on advancements in myeloma highlighted at the 2011 annual meeting of the American Society of Hematology.

I have blogged about the 'next generation' proteasome inhibitor carfilzomib and will likely have a chance to do so again as this interesting class of drugs expands. The proteasome inhibitors are a favorite of mine because they target a very interesting complex of proteins inside cells that was discovered in the 1990s. The proteasome helps the cell get rid of proteins that are made incorrectly or that get damaged once they are already made. Since myeloma cells grow rapidly and are actively making lots of proteins, they accumulate damaged proteins more quickly than normal cells. If cells cannot get rid of damaged proteins, they will die.

This explains, at least in part, why the proteasome inhibitor currently available in the clinic, Velcade (bortezomib), is effective in treating myeloma. Velcade and the immunomodulator Revlimid (lenalidomide) have become standard therapies for myeloma; unfortunately, not all myeloma cells are killed by standard treatments. Some myeloma cells are naturally resistant to treatment (referred to as treatment refractory) while others become resistant during treatment. Several studies are under way or completed that suggest carfilzomib might be active in myeloma that is refractory to treatment or becomes resistant during the course of treatment.

Two phase 2 trials have been conducted to study the efficacy of single-agent carfilzomib in treatment refractory or resistant myeloma. The PS0-171-003-A1 trial was reported at ASCO in 2011 [Proteasome inhibitors in myeloma: The next generation] and showed that 24% of patients who had previously received Velcade or Revlimid responded to carfilzomib. These responses were long lasting and there was a relatively low incidence of adverse events, including peripheral neuropathy (1% grade 3/4). Grade 3/4 peripheral neuropathy, which is considered moderate to severe neuropathy, occurs in about 8% of patients treated with Velcade for relapsed/refractory myeloma.

The second phase 2 trial with final results reported at ASH 2011, PX-171-004, showed similar results. This trial examined response to carfilzomib in patients who had relapsed or refractory disease but had not previously received Velcade. The response rates in this trial ranged from 42% to 52% depending on the dose of carfilzomib (20 mg/m2 or 27 mg/m2) with the higher response rate achieved with the higher dose. Responses were durable with a median time to disease progression of 8.3 months and 13.1 months at the low and high dose, respectively. This is an important result because the majority of patients had previously received an average of two prior therapies including Revlimid and/or stem cell transplant. The safety profile was similar to that seen in the PX-171-003-A1 trial.

One question frequently asked about carfilzomib is whether the decreased rate of adverse events is 'real.' In other words, do these statistics have any meaning for individual patients? The answer appears to be yes. A pooled analysis of overall safety from these phase 2 studies was also reported at ASH 2011. The pooled analysis showed that only 10% of the 526 patients on these studies required a dose reduction because of side effects. Eighteen percent of patients were able to stay on the treatment for at least 12 cycles. With regard to peripheral neuropathy, only five patients (1%) required dose reduction or discontinued therapy.

The ability of patients to tolerate their therapy for multiple cycles is important in achieving a response. Preliminary results of a continuation study suggest there are no cumulative long-term effects of single-agent carfilzomib.

Based on the results of PX-171-003-A1, the FDA has granted a standard review for consideration of approval of carfilzomib. This means a decision on approval will likely occur in the fall of 2012. A word about phase 2 trials, though: We have seen many instances where phase 2 results are not substantiated in randomized phase 3 trials. Even if approved on the basis of the phase 2 trial, the FDA will likely require a phase 3 study to confirm the phase 2 results. Phase 3 trials are under way in Europe and the U.S. The European trial, FOCUS, is evaluating carfilzomib versus best supportive care in patients who have had three or more prior therapies. The U.S. trial, ASPIRE, is assessing combination therapy with Revlimid/dexamethasone with and without carfilzomib in patients who have received one to three prior therapies.

• When the cancer comes back
• Two new drugs approved, one pulled from the pipeline
• The big news from the American Society of Hematology
• Studies highlight progress in lymphoma, pose more questions
• Drug approved specifically for treating myelofibrosis

Studies highlight progress in lymphoma, pose more questions

BY GUEST BLOGGER | DECEMBER 30, 2011

CURE asked Anas Younes, MD, professor in the department of lymphoma/myeloma, division of cancer medicine at M.D. Anderson Cancer Center in Houston, and a CURE advisory board member, for his thoughts on the lymphoma advancements announced at this year's American Society of Hematology.

I finally got to blog on what is news at this year's ASH meeting in San Diego. Almost 20,000 people attended the meeting, and more than 1,000 studies were presented on hematologic malignancies and benign hematologic disorders. But for lymphoma, I think the most important studies are the following three. That is not to say that other studies are not significant, but I think the following ones have a more relevant impact on the treatment of lymphoma. I will explain why.

A Phase III Randomized Intergroup Trial (SWOG S0016) of CHOP Chemotherapy Plus Rituximab Vs. CHOP Chemotherapy Plus Iodine-131-Tositumomab for the Treatment of Newly Diagnosed Follicular Non-Hodgkin's Lymphoma We all know that radioimmunotherapy (RIT) is active therapy for lymphoma. Two drugs (Iodine-131-Tositumomab (Bexxar) and ibritumomab tiuxetan (Zevalin) are already approved by the FDA for the treatment of relapsed follicular and indolent lymphoma. But in clinical practice, the use of RIT has been relatively modest compared to other newly approved drugs. Despite the documented safety of these agents, there is still a perception among oncologists and patients that these agents are not as safe as other drugs. Many of us wanted to see whether the use of RIT may improve patients' survival, which has not been shown in a randomized study. If so, such data would certainly re-energize the RIT field. This phase 3 randomized study was positioned to answer such a question.

Unfortunately, there was no difference between RCHOP and CHOP followed by Bexxar. I am sure many experts will try to dissect the data in many different ways, including whether this data is applicable to all RITs or just Bexxar. Should we do another randomized study with Zevalin? May be with rituximab maintenance? Should we include rituximab in both treatment arms as part of the induction? But at the end of the day, this trial as good as it is, will not help move RIT forward. With the current competitive environment that includes many new promising agents that have minimal side effects, I think the use of RIT, as we currently know it, will continue to decline.

Frontline Therapy with Brentuximab Vedotin Combined with ABVD or AVD in Patients with Newly Diagnosed Advanced Stage Hodgkin Lymphoma Brentuximab vedotin (or SGN-35) has produces 75 percent response rate in heavily pre-treated patients with relapsed Hodgkin lymphoma (HL). So, it makes sense to move it up front and test in newly diagnosed patients whose tumors are less resistant to therapy. Because HL is highly curable with chemotherapy, such as ABVD, it is unethical to test brentuximab alone in these patients. Instead, it makes more sense to add it to ABVD hoping the combined brentuximab + ABVD will be more effective. However, to prove the point, multiple steps needed to be taken. The first step was the core of this clinical trial: Is it safe to combine brentuximab with ABVD, and what is the optimal dose that we can use in such combination? Because ABVD is the standard regimen, it is kept intact while the doses of brentuximab are escalated to maximum dose.

During the conduct of this study, an increase in the incidence of lung complications were observed, which were similar to bleomicin toxicity: shortness of breath, dry cough and lung infiltrate. This toxicity was reversible in 9 of 10 patients with simple measures that included discontinuation of bleomycin and administration of steroids. But because bleomycin is the weakest drug in the ABVD regimen, and usually associated with unpredictable lung toxicity, it was eliminated to generate a brentuximab + AVD combination. At the time of the study presentation, brentuximab + AVD was not associated with any lung toxicity.

What was presented at ASH and was not in the printed abstract is the results of interim PET scan results after two cycles of therapy. With ABVD alone, we typically see 20 percent to 30 percent of the patients continue to have PET positive scans after 2 cycles, which usually correlate with bad prognosis. In contrast, after 2 cycles of brentuximab-based therapy (with ABVD or AVD), only 3 percent of the patients had positive PET. So these results look very encouraging, but of course we need more time and longer follow up to find out what this all means. Obviously, the ultimate test will be to compare the standard ABVD with the new regimen brentuximab + AVD in a randomized trial. This study is planned for the end of 2012. The outcome of such trial may indeed change the standard of care for patients with HL.

The Bruton's Tyrosine Kinase (BTK) Inhibitor PCI-32765 Induces Durable Responses in Relapsed or Refractory (R/R) Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL): Follow-up of a Phase Ib/II Study and The Bruton's Tyrosine Kinase Inhibitor PCI-32765 Is Highly Active As Single-Agent Therapy in Previously-Treated Mantle Cell Lymphoma (MCL): Preliminary Results of a Phase II Trial There is a lot of buzz about the promising clinical results with the oral small molecule inhibitor PCI-32765, which inhibits an enzyme called Bruton kinase. Last year, there was emerging data from a phase 1 study that also got a lot of attention. This year, the early results are now confirmed in a larger number of patients with CLL and MCL, both are practically incurable lymphoid malignancies.

In CLL, a 70 percent response rate was seen in 27 patients treated with 420 mg daily. This single-agent activity data is so impressive, so a randomized phase 3 study is being planned.

In MCL, results from an ongoing phase 2 study reported a response rate of 67 percent, which is also very impressive for a single agent in this disease. If this data continues to hold as more patients are enrolled, a phase 3 randomized study in relapsed MCL will be the obvious next step. There is a clear need for new agents for patients with MCL, and PCI-32765 may as well what we all have been waiting for!

• When the cancer comes back
• Two new drugs approved, one pulled from the pipeline
• Emerging treatment option for myeloma presented at hematology meeting
• The big news from the American Society of Hematology
• Drug approved specifically for treating myelofibrosis

Women and lung cancer: Time to turn the tide

BY GUEST BLOGGER | NOVEMBER 28, 2011

There will be more than 220,000 people diagnosed with lung cancer in 2011. They will be our brothers, sisters, grandparents, co-workers, closest friends. They will be our parents.

Last year, my mom was diagnosed with stage 4 lung cancer. She's never smoked. That's a fact that I always feel obligated to share when talking about her diagnosis, but sincerely hope one day won't be such an entrenched part of the lung cancer conversation.

Our family was shocked by the diagnosis and even more appalled to learn that lung cancer is the No. 1 cancer killer among both men and women, accounting for more than 1 in 4 cancer deaths. Surely, we thought, a cancer this prevalent and virulent - one that kills 80 percent more women than breast cancer - must receive significant government funding and public support. We were wrong.

Women Paying a Fearsome Price

As a daughter, my thoughts quickly turned to the more than 105,000 women who are diagnosed with lung cancer each year. This is a disease that kills more women annually than breast, ovarian and uterine cancers combined. Over the last several decades, women have come powerfully and effectively together to organize, mobilize and build critical public awareness and support for the diseases that threaten them most, particularly heart disease and breast cancer. With lung cancer diagnoses among women up six-fold since 1930, I couldn't understand why women had not applied the same conviction, energy and savvy to lung cancer. Then I looked at the numbers.

Lung cancer is poised to take the lives of 71,000 women this year and up to now, there hasn't been much reason to be hopeful. The overall five-year survival rate lingers at 15 percent, where it has been for decades. While new treatments and funding have propelled the survival rates for breast cancer to 90 percent, lung cancer remains in an unfortunate area of catch up.

With so few survivors, it's difficult to build and sustain a movement. And for those lucky enough to survive this dreadful disease, a sense of community can be hard to come by.

Rebecca's Tale

For my friend Rebecca, who was diagnosed with lung cancer at age 28, living with a lung cancer diagnosis has been an isolating experience. "Like many Americans, I was clueless when it came to lung cancer," she says.

"Every October, for years, I would dutifully pin pink ribbons on my bags and participate in breast cancer walks in solidarity for women. But then when I was diagnosed with lung cancer, I learned that it kills far more people than any other cancer (breast, colon, ovarian, melanoma, brain and leukemia combined), and there were hardly any walks, ribbons or support groups out there. I felt alone."

Since my mom's diagnosis, I have spoken with so many women who echo Rebecca's feelings of isolation and loneliness. Lung cancer is a disease that has never received public attention or research dollars in proportion to its prevalence or virulence. Precious little is said or written about it. The result is that the most lethal cancer killer of all runs rampant.

Together, We Can Change This

Determined to turbo-charge the lung cancer discussion, my family recently launched a nationwide educational campaign – Leaders of the Lung Cancer Free World – intended to generate greater public awareness and understanding of lung cancer. With three non-profit partners – the CHEST Foundation of the American College of Chest Physicians, the National Lung Cancer Partnership and Uniting Against Lung Cancer – the Leaders campaign aims to focus public attention on this unrelenting killer that affects smokers and non-smokers alike. The campaign has four distinct target issues: women, political leadership, the smoking stigma and general public awareness.

There are many ways to get involved. You can sign a petition encouraging the President and Congress to declare lung cancer a national health crisis, donate to one of three partner organizations, ask your representatives to support the Lung Cancer Mortality Reduction Act, follow the campaign on Facebook and Twitter or take a pledge to stop smoking.

Anyway you slice it, lung cancer is a national health crisis requiring our attention. Over the next five years, more than 1,000,000 Americans will be diagnosed with lung cancer. They will be our mothers, fathers, sisters, grandparents, coworkers, closest friends. Together, we can help save many of them.

Arielle Densen is a co-founder of Leaders of the Lung Cancer Free World, a lung cancer advocacy group, and created the James Sivartsen Prize in Pediatric Cancer Research at the Hebrew University in Jerusalem. For the past six years, Arielle has served as a wish granter for the Make-A-Wish Foundation.

• The Great American Smokeout
• I'm not dead yet!
• Xalkori approved for non-small cell lung cancer
• Drug approvals: Are we in a new age yet?
• More than just a funny movie about cancer

Learning to be a caregiver

BY GUEST BLOGGER | NOVEMBER 27, 2011

"I'll have a diet coke and the chicken sandwich with the veggies," I said to the waitress as I sidled up to the counter. I grabbed a book and began to read as I waited, trying to tune out the loud hum of the restaurant-goers. I've always loved coming to EJ's on my lunch break for both the atmosphere and the food. The large picture windows provide a clear view of the busy Little Rock street corner. The people walking by and the cars driving through the intersection reveal a city burgeoning with commerce and travelers.

The food at EJ's is good too. Besides the usual burgers and fries, they've also got healthier menu options like wraps, veggies and the like. I try to eat healthy as much as I can since my wife is always on my case to eat healthier. To be completely honest, I don't blame her. My diet will never be confused with Jack Lalanne's, so I'm fortunate my wife is always looking out for both of us. She frequently reads healthy cookbooks, so she can buy low-fat foods and cook heart-healthy meals. As a result, we've both been committed to healthy lifestyles and the two of us even ran a half-marathon last year.

At the EJ's counter, I tried to read my book over the sounds of the restaurant behind me when my phone began to ring. I normally don't answer on my lunch break unless it's the mayor (my boss) or my wife (my real boss). In this case, it was my wife, so I answered. I could barely hear her, so I pushed my seat back and stepped outside. "The doctor called. I have Hodgkin's lymphoma."

Boom! Crash! If my life were a cartoon, a ton of bricks and a grand piano would have fallen on my head. How could this happen? We were so healthy! What does this mean? What do we do now? What do I do? I would spend the next five months trying to figure all this out, flailing about in my new role as caregiver to a beautiful, 36-year-old cancer patient.

The idea of me as a caregiver is a bit laughable. To me, a clean room means I've piled my dirty clothes in a recliner rather than on the floor. A clean living room means I've moved the dirty dishes to the sink in the kitchen.

When faced with no choice but to sink or swim, one quickly learns to dogpaddle. Learning to be a caregiver is a similar experience (but not as wet). As I began my journey as a caregiver, I learned that everything becomes much easier when you're surrounded by supportive people and structures.

My own employer, the City of Little Rock, could not have been more supportive. I was glad to have an employer that wanted to make sure I never had to miss a single one of my wife's appointments, scans, exams or treatments. They have also been flexible on those days when I have needed to go home early on short notice or come in to the office late.

In addition to allowing me to take off when necessary, the city's policies allowed for me to take any hours I'm away from work providing care for my wife to come out of my sick leave rather than my vacation leave. Not that Elizabeth and I have the time or money to summer in The Hamptons, but it's nice to know I'm able to preserve the vacation days to do it if I wanted.

Being a caregiver is important, but it's not glamorous. Many people will recall that James Brady blocked a bullet meant for President Ronald Reagan in 1981, but even the most astute observers of American history would not recall the names of either injured man's nurses. Caregiving is humble work, focused outwardly rather than inwardly – a task more humbling in today's self-referential world of Facebook status updates, tweets and so on.

A caregiver's work is not measured by his own accomplishments but by the success of the patient. Success isn't found in washing the dishes or taking out the trash but in creating an environment in which the patient doesn't have to worry about such mundane things.

Through my role as caregiver, I've become a better person. I'm definitely a better housekeeper, but I'm also a better scheduler, a better friend and a better husband. With two chemo treatments to go (and radiation after that), my wife still has quite a road to travel, but it's a road we know will lead to better days ahead. I look forward to those days when I'll be able to sidle up to the bar at EJ's with all this a distant memory. Until then, I'll continue in my role as a caregiver, trying to dogpaddle as fast as I can.

Griffin Coop is a native Arkansan who works in the Little Rock Mayor's Office. He holds degrees from Syracuse University and Boston University and is currently pursuing a Master's degree in Public Administration at the University of Arkansas at Little Rock. Griffin enjoys college football, Southern literature and chasing the squirrels away from his bird feeder.

• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey
• Do men grieve differently?

A very special corgi

BY GUEST BLOGGER | NOVEMBER 21, 2011

Wow. We were in corgi heaven.

When we arrived, there were puppies in the front yard to greet us, and basically just corgis everywhere. The owners brought Cane in the house to meet us and we fell in love instantly. He was 3 years old, beautiful, playful, funny and obsessed with his toy. We passed inspection, and it was agreed that we would be Cane's new forever family. We were so happy. As we started on the long five-hour drive home with Cane in the back of the car all the "what if" thoughts kept creeping into my head and I began questioning our decision. My husband Steve kept telling me everything would be fine.

You see, I was having an imaging scan the next day to see if my breast cancer had returned. I was initially diagnosed in January 2006 and had gone through the standard treatment: bilateral mastectomy, chemo, radiation and tamoxifen. It was discovered in one of my follow-up scans that I had kidney stones, which were thought to be the result of my chemotherapy treatments. They were not causing any problems, and due to their size we decided to just do the watch and wait approach. That meant a kidney CT scan every year, no big deal right? Well, my urologist informed me after my scan in April 2009 that something was showing up on my liver - definitely not what I was expecting to hear.

A few days later we learned everything was not fine and that my breast cancer had metastasized to my liver and numerous lymph nodes. We were shocked, scared, angry and just plain terrified. The first time I had a fear of the treatment more than dying; now I was stage 4 and I most likely will die from breast cancer. Then I started thinking about Cane and wondering if we did the right thing. Were we crazy bringing home a new dog into our home when I was going back into treatment? How would I have time for him? Would it be fair to him?

Well little did we know, but he would end up being the best thing we could have done. Right from the start he was such a comfort to both Steve and me. He was by my side every day and never expected anything from me other than love. He put a smile on my face even when I didn't feel like smiling. He got me up and moving for short walks or just outside to throw the ball for him. He seemed to know when I wasn't feeling well and that sometimes I just needed the comfort of his head resting on my lap.

After six months and a good response from my treatments, I was able to switch to a more tolerable treatment and I began feeling better and having more energy. Cane seemed to sense my improvement and with that we also saw a change in him. He was still his lovable, attentive self, but now he seemed to have a whole new attitude and was always raring to go at the drop of a hat. Cane is so amazing and such a joy to have around; he will always have a very special place in my heart.

But there is always more love to go around. We got another corgi in August 2010. Her name is Poppet, and she is the same age as Cane and lived with him in their previous home. She is a sweetie and makes our home complete. I believe both Cane and Poppet have enriched our lives and helped us to cope with the reality of my cancer and that treatments will now probably be a forever thing since I have metastatic cancer.

They are the best therapy I could ask for and I am happy to say that my last scan in July 2011 showed no evidence of disease. We are enjoying life to the fullest, and our corgis are with us every step of the way.

Gail and her two corgis, Poppet and Cane.

Gail Lemberger, 52, from Camarillo, Calif., is a wife and mother with a 27-year-old son. She was first diagnosed with breast cancer in Jan. 2006 and then metastatic breast cancer in June 2009. She is a participant and volunteer at The Wellness Community Valley/Ventura.

Editor's note: Do you have a story of how a pet helped you heal? Submit a photo and brief description and we'll share your story with CURE readers <Submit your photo here>. Also, stay tuned for an upcoming article on how pets help us during and after a cancer diagnosis.

• Make a difference
• For the Cure to a broken heart
• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation
• Video blog: HER2-targeted agents

I'm not dead yet!

BY GUEST BLOGGER | NOVEMBER 16, 2011

A few years ago, I saw Monty Python's Spamalot, the stage musical version of the 1975 comedy film Monty Python and the Holy Grail. At the souvenir stand, I could not resist the T-shirt with the words, "I'm not dead yet." I wore it a few times, and eventually it worked its way to the bottom of the pile in the closet and was forgotten. Little did I realize then just how much that phrase would come to mean this year.

In March, I went for a routine checkup and, as a longtime smoker, I agreed with the doctor that a chest X-ray should be done. Long story short, I was diagnosed with stage 2B non-small cell lung cancer in April. Actually, I was diagnosed with lung cancer; staging was done at the cancer center I went to 10 days later.

I chose to dive into learning all I could about lung cancer during those 10 days between appointments. It is amazing how little hope there is on the Internet. I soon came to realize that the one phrase that seemed to be missing from all of the articles I read was "if found early."

"If found early" is a phrase that is pounded into our heads in all of the cancer awareness commercials.

That same lack of hope started to appear on the faces of family and friends as I broke the news to them. Each of them had a personal link to a sad story about lung cancer. They all came up with a "if you need anything" or "my prayers are with you." Very few said anything like "you can beat this" during that first conversation. Thank goodness I have a longtime friend who not only beat lung cancer, but he did so nearly 10 years ago! This knowledge, along with his constant encouragement, gave me the strength to scream, "I'm not dead yet!" every time I read an article or saw someone trying to hide a tear when they saw me. OK, I didn't really scream it at people, but I did point to the phrase on that T-shirt.

I wore that shirt two or three times per week as I went through two rounds of two chemo meds, 28 days of radiation and the weeks between the end of treatment and surgery. I lost a lot of hair and got dark circles under my eyes. I was very tired most days. Instead of letting myself get worked up while waiting for all the pre-op tests, I took a trip to Maine and Canada to do and see things I had never experienced before.

In August I had extensive surgery to remove the lobe of the lung the tumor was in, as well as a few ribs and parts of some vertebrae that the tumor had been touching. While I spent a week in the hospital recovering, when I could get online, my status updates always included the phrase, "I'm not dead yet." My surgeons told me that the surgery went well and they would see me in two weeks. Recovery was very long and painful, but that phrase became my mantra, and I kept chugging along.

I'm not dead yet! And I don't plan to be for a very long time! At my post-op appointments I was told that I had a "complete pathologic response," which means that the cancer had been completely killed even before the surgery. Here I was, less than five months later, being told I was cancer-free.

Lung cancer is not a death sentence. I know this, because: I'm not dead yet!

Mary Tracy-Dolobowsky is a mother, wife, biker, nature/wildlife photographer, two-time cancer slayer (melanoma & lung) and lung cancer awareness blabber-mouth.

• Women and lung cancer: Time to turn the tide
• The Great American Smokeout
• Xalkori approved for non-small cell lung cancer
• Drug approvals: Are we in a new age yet?
• More than just a funny movie about cancer

I am Julie

BY GUEST BLOGGER | OCTOBER 14, 2011

I am Julie, wife of Jeff, mother to Kalyn and Hannah, daughter, sister, aunt, cousin, niece, daughter and sister-in-law, friend and a metastatic breast cancer survivor of six years.

My story begins in the shower. A horrible fear encompassed my being as I felt a lump on the left side of my rib cage near the start of my breast. Never had I completed a self-breast exam--that task I left for my OB/GYN. After a mammogram, ultrasounds and antibiotics for swollen lymph nodes, a biopsy proved that I had infiltrating ductal carcinoma, a 0.9-cm ER/PR-negative, HER2-positive cancer with 8 of 12 nodes testing positive.

I had a bomb dropped in my lap that I did not know how to dismantle. Overwhelmed with the news, I eventually had to leave the surgeon's office. I was a mess. I stared at the elevator and saw a man and woman waiting for the doors to open and, I asked myself if I should wait or go.

The elevator door had closed and the couple was still behind me. The lady asked if I believed in God. I told her yes. She said, "Honey, he is with you now and will be with you on your journey." It felt like it was the first time that afternoon that I had taken a breath and felt calmness. It was just one floor, just two minutes and already I was starting my healing process with this beautiful gift from a stranger. As we left the elevator, I stopped her, embraced her and thanked her. Yes, God was with me.

I armed myself with my family, friends, prayers and the best oncology team in Ohio. Adding whatever I could grasp from the Internet, survivors and books to my warrior strategy, I was ready for this cancer battle. I think I ended up knowing enough to get a college degree in oncology. All that studying really didn't matter. God had a plan for me, and I told him that he knows how sassy I am. I had plans as well. I said that I am going to do this in a "sassy Julie" style, and I hoped he would be proud of me.

Timing was great for my breast cancer (Herceptin had just been approved for non-metastatic HER2-positive cancer), perfect for my chemotherapy treatment and continuation after radiation. My family shaved my head; we took a lot of pictures, had hat parties, went to school plays and games, laughed and celebrated holidays. I thought that as a walking "bald woman" billboard would start some conversation and create awareness. I still had what my husband called my "high maintenance days" when I would get concerned with the "what ifs." My wellness plan was to allow cancer to live in my life, and for me not to live in cancer's life.

I cannot let life pass me by. I want to live and continue to be positive about everything, even throwing up, which means the chemotherapy was doing its job. I have much more to do. Each day I looked for one good thing and somewhere along my journey everything was beautiful and life trumped cancer completely.

The headache that would not go away did not go unreported. Now I listen to my body and have learned that my cancer had spread to my brain. Hearing the results, I was ready for action. While they were setting up my radiation schedule, I was calling all my friends and family for a dessert party and hair shaving party when we arrived home that evening.

Again, it was perfect timing for me with those innovative people that come up with new medications. Tykerb was the ammunition that filled my warrior belt this time. Aggressive radiation, prayer, Tykerb, radio static gamma surgery, more Herceptin and positive attitudes of all the people that surround me made for another successful treatment.

My degree is not in oncology but life. I continue to take Herceptin every three weeks. I look forward to going to the infusion center to visit with friends and meet new people. A world without cancer may not be in my lifetime, but I am happy to be a part of putting an end to it. I have no complaints about my cancer journey. I am blessed to have the opportunity to grow into the woman that God intends for me to be. What I have is an open door to give to others as they have given to me.

You are important. Take care of yourself. Surround yourself with faith, family and friends. Celebrate life and be ready to jump into your elevator, as you may not know what is waiting inside for you.

Julie Tate is featured in the Faces of Metastatic Breast Cancer video that provides a look at how metastatic breast cancer is different from early-stage breast cancer and offers simple ideas on how friends and family can help. For every video view, Genentech will donate $1 to MBC initiatives and programs (up to $20,000).

• Make a difference
• For the Cure to a broken heart
• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation
• Video blog: HER2-targeted agents