As Updates continues to grow, I would like to add new features. One of the things I want to do is have periodic guest articles from CLL patients and physicians. We did that on www.clltopics.org website as well, and it was very popular. Below is the first of such guest articles, written by a CLL patient who is also a physician. “11qRick” is a user ID that many of you have seen on this and other patient forums.
SLAYING YOUR CLL DRAGON: OPINIONS FROM A PHYSICIAN CUM PATIENT
Eric B. Zelnick, MD
Chaya asked me to write this piece to share my thoughts regarding how to approach dealing with CLL with the goal of progressing towards a possible cure.
My nom de guerre is “11qRick” and I have practiced medicine for more than 30 years.
When I was diagnosed with CLL several years ago, my knowledge about the disease was more or less what I knew when I graduated from medical school in the mid 1970s. I personally owe a great deal to Chaya and her late husband for the resources and guidance they provided in my education about CLL/SLL.
As Forrest Gump said, “Life is like a box of chocolates…you never know what you are going to get.”
I actually was the physician who ordered the CBC which led to my own diagnosis. I was having elective back surgery and I ordered the CBC as a baseline because a “type and screen” had been requested in case a peri-operative transfusion was needed. I gave little thought to that CBC.
As soon as the lab called me with the abnormal results, I knew that I had CLL, but little else about this disease. I was about to get quite an education! The next day I saw an oncologist I had known for close to 30 years to get my evaluation started. I quickly realized that his knowledge of CLL was far greater than mine, but still limited.
Within a few days of my diagnosis, during office hours, I saw a mutual patient that my colleague (now also my oncologist) had been treating for CLL for the preceding 12 years. I had been seeing this man for an unrelated medical problem for over 20 years and had never paid much attention to his CLL. The patient was then 79 years old and had only modest symptoms of anemia and lymphadenopathy. He fit into my initial impression of CLL as a slow growing and relatively treatable cancer. I said to myself, “this is how I want my CLL to be”. Alas, it was not to be.
My education began in the medical library of my hospital, and progressed rapidly as I read many of the articles presented on “CLL Topics”. When my FISH results returned with disappointing findings, Chaya was kind enough to suggest an excellent CLL specialist whom I saw as soon as I was cleared for travel after my surgery.
My disease turned out to be fairly aggressive, with ALC rising by about 20,000/month in that first year after diagnosis with slowly progressive adenopathy and anemia. I have undergone two courses of combination alemtuzumab/rituximab therapy and this has so far kept things under control.
I have extensively researched the potential treatments and, like all younger CLL patients with aggressive disease, I have spent much time contemplating my possible future treatment options, including HSCT.
Some months ago I was asked by another patient’s wife to outline my thoughts as to how best to approach this disease and to discuss the likelihood that her husband could achieve a cure.
I am NOT a CLL expert. You must take my opinions for what they are…those of an informed and well-educated person with a very real personal interest in CLL in particular, and cancer in general. My experience as a physician is helpful, but does not qualify me as an expert. The following discussion addresses the question of treatment choices in CLL..
It is my firm belief that the biology of CLL makes it very unlikely that “chemotherapy” ALONE will ever be curative as may be the case with some of the acute leukemias. Chemotherapy supplemented by immunologic approaches, however, may well work at some time in the future. For those of us in our 60’s or younger this is important to understand.
My thoughts about how best to treat CLL are simple. The nature of this disease, with such a widespread deployment of lymphocytes throughout the body makes complete eradication of malignant cells by current chemo-immunotherapy unlikely. In CLL/SLL the malignant lymphocytes are very much like normal, mature B lymphocytes…this allows them to go where they wish and may permit them to play “dodgeball” with the various drugs that may be thrown their way. Evidence also indicates that CLL cells may seek “safe havens” in the marrow and lymph nodes where they are protected and nourished by other cells. For this reason I doubt that traditional chemotherapeutic regimes, even when supplemented with monoclonal antibodies, will ever succeed in eradicating all of the malignant cells and effect a complete cure.
For those with indolent disease, especially those who are closer to their “expected” natural life span, there is little sense in doing too much to rock the boat and risk the very real complications of therapy. If I were a 75 year old I believe I would be content to go slowly from one therapy to the next, trying my best to avoid unnecessary treatments and their risks/complications. In fact at certain ages and with certain comorbidities, ignoring the CLL may be most appropriate.
Major advances have been made during the last 30 or more years (think FCR, PCR, HDMP+R, CFAR, RCVP, and the rest of the alphabet soup, now energized by even newer therapeutic approaches). Many, many people have and will continue to benefit from them. Other therapeutic approaches such as PARP-1 inhibitors, SMIPs and possibly Nutlins are on the horizon.
I expect improvements in treatment will come for CLL in time, but I don’t see a CURE in the next decade without the use of an immunologic attack on the native cancer cells. This is what is accomplished with HSCT and also with other less harsh approaches such as the NK cell therapy.
With the current therapeutic options, each of us must make his/her own choices based on personal circumstances, feelings and the advice of knowledgeable physicians using the best available information. For me, in my late 50’s with aggressive disease, ongoing therapeutic courses of action could buy me time, but not enough time for a therapeutic breakthrough which would offer me a real cure. There is a potential price to be paid for delaying action if the “window of opportunity” for success with HSCT diminishes with additional treatments and advancing disease.
I prefer to save the big guns for my ultimate battle. I believe that going from one chemotherapy to the next leads to ever weakening overall health and achieves ever shorter remissions. For some people this will be good enough. This is a personal decision and there is no correct answer. I believe it is important for us as patients to enter any therapy without misconceptions about realistic expectations…it may work, but for how long?
The best evidence to date suggests that immunologic therapy is necessary to cure CLL. For now that means HSCT (and all of it’s risk) is the only path to cure. Each CLL patient must determine if the risk is appropriate. Tomorrow, “safer” therapies utilizing NK cell infusions or therapies to unleash a patient’s own T cells on their tumor may become available.
There is no doubt that some who have gone before us have had bad experiences whatever the treatment choice that was made … I cannot argue with the facts. Life is a risk and you never know if you are going to make it through any given day. I find comfort that throughout the ages there have been numerous people who have survived both natural and man-made disasters against all odds. We all must have faith in ourselves and our own resourcefulness.
Good luck to everyone,