An Open Letter to the Newly Diagnosed CLL Patient

It is unfortunate that you have been diagnosed with CLL. I was diagnosed nearly 12 years ago with CLL at the age of 33 – very unusual at that young age AND for a female. It has been a very long journey, however, I am blessed that I am still alive today. Many new developments, prognostic testing, and some alternative therapies are gaining momentum and I wish I had had access to them early on after my diagnosis. So I will share these thoughts with you as well as a listing of the most important online resources and CLL specialists in the world that you should access to educate yourself about this disease.

Early on, I made the decision (that I will never regret) to learn all that I could about the disease and to become the best health advocate for myself that I could become. I literally have file cabinets of journal articles relevant to CLL. I also encourage you not to be intimidated by the medical professionals. Just as we hire and fire plumbers, mechanics, and other professionals, we must realize that we can hire and fire physicians just as easily. You will discover that no one doctor will have all of the answers to the questions that you have (although I will direct you to some of the CLL experts in the world who come close to having most of the answers). If you can locate a family physician to coordinate your care, I would recommend doing so. My trusted family physician has provided some of the very best care I have ever received. She has treated infections, acted as a sounding board for me as I debate treatment decisions, orchestrated complementary therapies, and provided quality, general healthcare for me.

Please reflect on this information and then discuss questions about it with your physician. I am not a physician so I advise you to review this open letter with an open mind. If your oncologist does not support your wishes, replace him/her and move on! There are different levels of oncologists. I have traveled back and forth to Washington, DC to the National Cancer Institute. Drs. Gerald Marti and Bruce Cheson (now at Georgetown) both have provided excellent care for me. They taught me this vital fact: local, community oncologists are treating every type of cancer that is diagnosed. No human being could possibly remain abreast of all current research and findings for that many varieties of cancer. So on their behalf, the community oncologists are trying their best to stay abreast on all cancers and cancer treatments, but best isn’t good enough for those of us who are fighting for our lives. A step up to the slightly larger hospitals will yield only slightly better care. I went to an Indiana University Medical Center hematologist and after a huge battle with him at my first visit (as I knew he did not understand what he was recommending to me), I fired him and moved forward.

An excellent article from Mayo Clinic can be located at: http://clltopics.org/tchoices/NeedtoKnow.htm -- it details information that YOU and YOUR ONCOLOGIST need to know about your care. The entire PDF version can be downloaded from this site.

Before making any vital treatment decision, you need to be consulting with the CLL doctors who focus and study this one form of leukemia. Dr. Terry Hamblin lives in England. My estimations and most of his colleagues rate him as one of the worldwide authorities on CLL. At times, his recommendations have literally saved my life. The easiest way to access his brilliance (and the support of over 2000 other CLL patients) is to join the online listserve CLL ACOR group. Once a member, you can search years of archived materials from patients. Dr. Hamblin has been a past listmember and volumes of his responses are on this online forum. Dr. Hamblin also has his own Blog with volumes of CLL information available. Visit http://mutated-unmuated.blogspot.com/ .
TO subscribe to the above-mentioned online ACOR group go to: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=cll&A=1

If you decide to begin aggressive treatment, I will recommend centers of excellence for you – however, if you are going to “play” the watch and wait (and yes, sometimes worry) “game” that I’ve played for so many years, it is not always best to go to these centers. You most likely will be directed to quite aggressive treatments or treatments in early Clinical Trial phases at these centers, as that is what they are researching. Often times, these may not be a good hospital choice if you are trying to avoid aggressive treatment, but if you decide to pursue that route, you need to be at one of these hospitals.

Fortunately for me, Dr. John Byrd, another leading CLL specialist moved to Ohio State University in Columbus, Ohio. So that is the nearest hospital to me with a CLL specialist. I am currently consulting with Dr. Byrd. Dr. Kanti Rai is in New York; Dr. Kipps is in California; Dr. Furman is at Cornell in NYC; and Dr. Michael Keating is at MD Anderson in Houston. That is pretty much the roll call of CLL Centers of Excellence for treatment of CLL (I had previously mentioned Dr. Marti at the NCI and Dr. Bruce Cheson located at Georgetown).

The best CLL website you can access is http://www.clltopics.org/ . There is much material on this – all scientifically based, not just rhetoric and opinions. One of the first things that you should do outside of locating a physician who will work with you as a team (not a dictator) is to obtain the proper prognostic indicators. Simple lab tests have been developed since my diagnosis and they can give a fairly clear picture of the aggressiveness of your specific variety of CLL (don’t let anyone tell you that all CLL is the same – varieties of CLL vary immensely in life expectancy, treatment requirements, quality of life, etc.)

Prognostic Indicators Recommended to me at OSU were:

Flow Cytometry
Beta 2 Microglobin
Karyotype and FISH for CLL
IgVH

Some centers of excellence recommend the ZAP-70 testing, however, this must be performed by a reputable laboratory. CD38 levels are also often tested.

My insurance has covered the costs of these tests, but you will need to determine your own coverage. Some of these tests are VERY expensive. Once you receive your results, (you must ask for a copy of every test, labwork, etc—it is your right to have this information), you can post it on the ACOR list and I am certain someone will give you an accurate interpretation of the findings.

While addressing this topic, I have set-up spreadsheets in Excel to track my labs. I would recommend this. If you are familiar with Excel, you can the track your WBC, RBC, HGB, and platelets. Keep accurate records of your lab reports, hospitalizations, treatment notes, etc. When I first visited OSU, I had to compile a 12 year disease history with the Physician's Assistant. This would have been impossible without the thorough record keeping I have done.

Don’t focus and obsess over one bad lab report. I remember early on after diagnosis, becoming petrified if I found out that my WBC jumped by 5000. I have had white counts of nearly 400,000 and lived to tell about it and as I reminisce about the early CLL years, I wish I had relaxed more and would have had someone to tell me to relax. Just watching the overall trends in your counts is what you need to do, not focusing on one set of labs.

A CLL “Primer of Information” can be located at: http://clltopics.org/Primer.htm . This is excellent information.

Do you accurately know what stage your disease is currently at? You will be amazed at the oncologists who do not even know the accurate staging. According to the National Cancer Institute, these are the proper guidelines for determining the stage of CLL:

The following stages are used for chronic lymphocytic leukemia:
Stage 0
In stage 0 chronic lymphocytic leukemia, there are too many lymphocytes in the blood, but there are no other symptoms of leukemia. Stage 0 chronic lymphocytic leukemia is indolent (slow-growing).
Stage I
In stage I chronic lymphocytic leukemia, there are too many lymphocytes in the blood and the lymph nodes are larger than normal.
Stage II
In stage II chronic lymphocytic leukemia, there are too many lymphocytes in the blood, the liver or spleen is larger than normal, and the lymph nodes may be larger than normal.
Stage III
In stage III chronic lymphocytic leukemia, there are too many lymphocytes in the blood and there are too few red blood cells. The lymph nodes, liver, or spleen may be larger than normal.
Stage IV
In stage IV chronic lymphocytic leukemia, there are too many lymphocytes in the blood and too few platelets. The lymph nodes, liver, or spleen may be larger than normal and there may be too few red blood cells.

This site provides accurate, general information about this disease: http://www.cancer.gov/cancertopics/pdq/treatment/CLL

When I learned that there was no cure for CLL it became obvious to me, that I was going to go the very, very conservative route. EVERY treatment choice will bring side effects and don’t let anyone tell you differently. I’ve chosen to NEVER take a full-dose of ANY treatment that I have had. I take enough to decrease the tumor load and the symptom that have brought me to treatment, not striving for “remissions”. My philosophy has proven to be pretty successful for me. BUT THIS IS A DECISION ONLY YOU WILL BE ABLE TO MAKE FOR YOURSELF WITH YOUR OWN PHYSICIANS. NO ONE – spouse, parent, child, or doctor can tell you what you feel in your heart and soul that you should do. Your results from prognostic indicators will play a critical role in the treatment path you select.

For some, never striving for remission is too difficult emotionally. Granted, the natural instinct when told that we have cancer, is I HAVE TO ERADICATE THIS MONSTER! CLL plays by some different rules. Our daughters were all under the age of 14 when I was diagnosed, so that kept me from playing with the more aggressive therapies, I believe. I figured if I could mentally handle the disease living in my body and treat it more like a chronic disease such as diabetes, etc., that I would go that route and hope and pray that I would live to raise them! But that is not always an achievable plan.

Knowing your prognostics will give you more confidence in making your decisions. My prognostics are fairly good although I’ve had a pretty aggressive disease course (very enlarged spleen, transfusions, very high WBC, etc.) I have taken Fludarabine and Rituxan as my conventional treatment options.

I have done numerous alternative therapies also. The main one of those I’d like to mention is the use of green tea extract to slow the growth of CLL. I wish this finding was available when I was diagnosed, as I don’t believe my disease would be as advanced had I known this. I began researching the use of green tea extract and was amazed at some of the findings of how it could kill CLL cells. I brought my articles to my family physician and she agreed it was worth a try. Next I researched the brands that offered the purest form of this and determined that TEAVIGO (made by Pure Encapsulations) seemed to fit that bill. Amazingly, three months after I began my own personal clinical trial with TEAVIGO, Mayo Clinic began an actual clinical trial (still underway) using green tea extract and CLL patients. http://clltopics.org/Phyto/LatestonGreenTea.htm . It appears that it has slowed the progression of my CLL to some degree. The Pure Encapsulation Brands can only be ordered through a physician. Also, simply drinking green tea has been proven to be good for our immune systems and possibly for the CLL. I try to avoid caffeine however, you will get some of it in the capsules and some green tea products.

I don’t want to overwhelm you with information. I’ve just tried to give you the most important facts that I’ve learned during these 12 years. I hope something in this open letter is helpful to you. Again, only YOU can make YOUR decisions and you need to locate a doctor who will support YOU.


Fortunately for me, many of the decisions that I have made, were influenced by other CLL patients and their experiences. I am most grateful for these CLL mentors who have helped me and, in turn, I strive to help newly diagnosed patients in the same manner.

Keeping a positive attitude combined with a lot of faith has helped me through this time. Take excellent care of yourself – adequate sleep, diet, exercise, etc. All of that helps to support your immune system, which begins to take a harsh hit after years of the disease (infections pose the biggest threat to my life in most instances and have caused most all of my hospitalizations).


Fight the good fight. Educate yourself. Stay focused and positive. Find excellent physicians to guide you on this journey.