If you are new to the CLL Topics family, chances are you have just been diagnosed with this nasty stuff called CLL, probably following a routine blood test. Stark terror at mention of the “Big C”, followed by bewilderment when the doc probably told you CLL is “the good cancer to have”, nothing to worry about, yada, yada – right? How can it be “cancer” and “good” at the same time? If you smelled a rat right away, good for you! A little bit of healthy skepticism is a good prognostic indicator in this game.
That is exactly what happened to my husband P. C. Venkat in the summer of 2001. Back then there were few credible sites on the internet where patients could find usable information regarding this insidious, always frustrating and sometimes life threatening blood cancer. It is not an exaggeration to say that I have spent the better part of my waking life since that fateful summer day of 2001 trying to learn as much as I can about this enemy that threatened our family.
CLL Topics Updates continues the crusade of patient education and empowerment that began with our flagship website CLL Topics. ”Updates” is an interactive site where you will find people who care, people who are well informed, who share information and feel they are stronger because they work together as a group for the common goal of improving therapy options for CLL patients. This is a strictly layperson effort by people with no ties to the medical or pharmaceutical establishments. Our only agenda is patient education and empowerment. You must be a registered member before you can participate in CLL Topics Updates.
We try to stay pretty much on topic in our discussions without much social chit chat or off-topic conversation. The bias is definitely towards mainstream medicine, the latest developments, new drugs, new clinical trials and the critical evaluation of the results of such trials. We call it like we see it when it comes to the pros and cons of various therapy options our patients have. As I am fond of saying often, there is no free lunch when it comes to cancer treatments.
We also tend to be pretty hard nosed about miracle cures, TV infomercials that promise to cure everything that ails you (except the condition of your wallet), one-of-a-kind anecdotal stories and gushy “testimonials” that are often nothing more than self serving advertisements for “cancer gurus”. I will be upfront and confess I have very little background and not much interest in alternative medicine approaches. (Even though I come from India and my maternal grandfather was a homeopathic practitioner to boot!) That is not to say there is no value in herbal medicine. Some of our most potent chemotherapy drugs come from herbal sources. As soon as new candidates make it into well conducted clinical trials at reputable institutions, I will be first one to tell you all about them – until then, I will not waste my time or yours with wishful thinking.
As the chief science writer of CLL Topics Updates I try to translate medical jargon into something that begins to resemble plain English. People tell me I write about all this serious and life threatening stuff without quite losing my often times ‘snarky’ sense of humor; that I do not always genuflect when talking about the superstar physicians and CLL experts (some of them with egos to match); that I have been around the block enough times that I no longer buy overblown industry hype; that I have a bit of an attitude, if you will. I confess. Guilty as charged, on all counts. I hope that works for you.
I have no formal medical training, but I have been a researcher and scientist all my professional life. You can read about my educational and professional background here: Qualifications. I have been a very interested layperson observer of the CLL scene since 2001 when this disease suddenly become a very scary and in-your-face crisis for our family. I have been there, I have walked in the shoes of every spouse that lies awake late at night listening to the soft breathing of his/her partner, too scared to sleep and terrified of losing the one person that matters most in the world.
My obligation and duty to my readers is to tell the truth, the whole truth and nothing but the truth, to the best of my ability. My readers’ obligation to me is to understand our clearly spelled out limitations, our acknowledged bias towards medical information based on evidence based research, and our determination to call it like it is, no sugar-coating the facts. Please do not shoot the messenger when the facts scare you. Please do go to your medical health care team when you need medical advice. That is what they are paid the big bucks to do!
The latest QOL (Quality of life) survey results published in the British Journal of Hematology had some interesting findings. It seems CLL patients do not appreciate being told to go home and not worry their pretty little heads, this is the “good cancer” to have, and they are more likely to get hit by the proverbial bus while crossing the street. It seems most patients have a better understanding of this disease and its ramifications, especially after they experience first hand the impact this disease has on them and their families. Perhaps if more doctors were less condescending, if they took us and this disease more seriously, we would have better therapy options, more research would be done to improve our survival odds, more efforts made to develop Best Practices and expert consensus, more serious attention given to prophylactic protection against opportunistic infections that kill majority of CLL patients.
Trickle down of life saving “Best Practices” developed at CLL expert centers to the level of the community oncologists is dangerously slow. Most patients are treated by local guys, and the quality of health care can vary all over the map. You might get lucky and find a terrific doctor with up-to-date information and willingness to go the extra mile to give his patients the best possible care. But when rubber meets the road a significant percentage of local oncologists are dealing with many different kinds of cancers, running busy oncology practices and often dealing from a deck short of several CME (continuing medical education) programs. That is the information gap we try to bridge. The title of one of our most read articles on CLL Topics is “What you and your oncologist don’t know can kill you”. We try to teach you what you need to know today, not in six months after your local onc has gone to the latest ASH (American Society of Hematology) meeting, and just happened to attend the right lecture by experts from Mayo Clinic or M. D. Anderson.
In June 2008, almost exactly seven years after his diagnosis, we published my husband PC’s Obituary on CLL TOPICS website. Thus ended an era in my life – it was a painful chapter that will remain fresh in my memory for as long as I live. In my case, seven years of nightmare scenarios I imagined while lying sleepless at night and listening to him breathing softly next to me, those nightmares are now my everyday reality. But that does not have to be your future!
What is the take home message from Harvey’s Journal? Should “Harvey” (thinly disguised pseudonym for my husband PC, who no longer needs the privacy protection it afforded) have gone “gently into that good night”? Would he have been better off if he had not fought his very aggressive form of CLL, kept his eyes tight shut while trusting his life to the tender mercies of the first oncologist he found in this small Arizona town? Should he have allowed himself to be given the bum’s rush into fludarabine therapy even before his CLL was fully diagnosed?
Not on his life! Fighting to stay healthy, fighting to keep in good shape, fighting to avoid infections and making smart therapy choices gave PC seven years with excellent quality of life. Barring the backrooms of oncologists’ offices when he was getting infusions, PC was never hospitalized in all these years. He worked out regularly, ran his ever so energetic Aussie Shepherd dog into the ground while hiking the mountain trails around Sedona, enjoyed his life and his family. We had memorable vacations in England, south of France, beautiful Oregon coast where we watched whales migrate. We watched our daughter grow up to be a lovely and strong woman of character and generosity. We made a lot of new friends. Life was good. I will forever be grateful for those seven years of precious memories of my husband.
Seven years after he was diagnosed, PC made the choice to volunteer for a double cord stem cell transplant clinical trial when his CLL karyotype developed ever more bizarre chromosomal deletions and mutations, and everything pointed to a messy and early end to his story if he dithered much longer. He and I did everything we could to make the odds a little bit better for himself. He had a lot to live for, and he fought hard to grow old with me. And we almost won the jack pot, almost made it back home with a complete CURE! We came so close we could taste it.
But it was not to be and PC died of an opportunistic pulmonary infection soon after the transplant. But I take great pride in how he lived his life in the face of adversity. He stuck to his guns right up to the end and went out with his flags flying high. He died as he had lived, with courage and dignity. Just days prior to his death he was still answering emails from our members, still trying to jump start recruitment for a clinical trial we were funding.
Clinical trials are the life blood of all new research. Without well conducted clinical trials and credible results based on solid clinical data rather than wishful thinking or marketing hype, we have no hope of getting better therapy options. Every patient who signs up for a clinical trial is a true hero that deserves our admiration and respect. Without these brave pioneers to lead the way, CLL will continue to be an incurable cancer. There. Enough of this kabuki dance, I said it out loud. CLL is not the good cancer to have. CLL continues to be an incurable cancer, barring successful stem cell transplantation. How can we hope to change things if we do not acknowledge the reality of how things are right now?
I will give you one more reason why you should be interested in new developments in CLL, better therapy choices that can possibly cure this awful disease someday. Do you remember the exact day, the exact time you were told you had CLL? Was that the worst day of your life? I beg to disagree. For most of us, the worst day of our lives will be the day we hear a beloved child or grandchild has inherited CLL from us. Familial CLL is a scary fact of life. People with a history of blood relatives with CLL are much more likely to get this cancer as well, and often it is more aggressive in the next generation. My husband is gone, and I will miss him for the rest of my life. But we have a lovely daughter who has inherited the best and worst of both of us. I hope she will never have to fight CLL, that she has lucked out in the genetic lottery when she was conceived. But if she does draw the short straw as did her father, I want to be in the trenches with her and I want to be loaded for bear. How about you? Do you have kids and grandkids? Buying a little insurance by way of patient advocacy and clinical trials sounds good to you?
Our registered membership grew by leaps and bounds after we got going with CLL Topics. We were written up in the Wall Street Journal and the Washington Post. I got to know most of the CLL experts in this country and abroad on a first name basis. I have been an invited speaker at the NCI / NIH and the UK CLL forum. Pharmaceutical companies now return my emails in record quick time. Heck, most of the time they write to me to tell me about their latest and greatest. I have co-authored articles with some of my favorite experts at the Mayo Clinic. We have funded and sponsored clinical trials at some of the best cancer centers with money donated by patients and their families. You might say CLL Topics does not leave a mere impression any more, it leaves a dent.
But what I am most proud of is that we have developed a sense of community, a sense of not being alone in this scary place. Interestingly enough, a big chunk of our members are spouses (or close family members) of CLL patients, not patients themselves. The most heartbreaking member was a kid just in her teens, trying to learn about stuff that was much too hard for her, because her dad was in denial and did not want to face this monster head-on. The most inspiring are all the caregivers who try so hard to come up the learning curve, to be there for their loved ones. So many stories, so many people who are now closer to me than my own flesh and blood family – some are success stories that give me the optimism and energy to keep going. But there are far too many names in my email address book where the owners have departed to places unknowable, names and addresses that I do not have the heart to delete. I would like to see that changed in the future.
My husband PC did not go gentle into that good night. If his story and his dedication to your cause over the last seven years of his life made the path forward just a bit easier for even a few patients, he would have been proud. I can think of no better memorial to my beloved husband of 37 years and no better insurance for our daughter that hopefully has not inherited predisposition to the same disease, than continuing the crusade we both cherished, for as long as I am able.
Grassroots support from our members is the wind in our sails. It is what gives us credibility when talking with researchers and expert clinicians, it justifies our chutzpah when we argue with drug companies to include CLL in their research objectives. It gives us access to off the record scuttlebut when we attend industry conferences. I hope you will join us in this fight – it is after all your fight. We need your passion and active participation to keep going.
Founder and President, CLL Topics, LLC