Guest articles
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.net 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,
Rick
58 comments on "Opinions of a physician – patient"
Dr. Rick,
Thank you for the honest assesment. As you say the nature of this disease dictates that Chemotherapy alone may never lead to a total “cure”, but again it may be the answer for some of us who want to avoid the high risks of the current immunological treatments.
I am fortunate…funny word…to have a more indolent form of CLL. I was diagnosed two years ago and do not have any negative symptoms as of yet. I have started reading texts on immunology, and although I am not a doctor, I can recognize quite easily the complicated nature of our immune system and how it works to protect our bodies from disease and infection. I agree that a “cure” will come from a new way to manipulate that system to fight the cancerous cells in the body.
Thank you again for taking the time to share your thoughts with us.
Regards
Fred
Thanks for taking the time to write this.
Michael
What a great intelligent article. Thank you for sharing your thoughts . We as patients have no control over the disease,but we have control what we want done to our body. No medical proceedure is without risk at some point we all have to make that decision.
Femma
Dr. Rick:
Very smart, very practical advice. I was diagnosed in 1999. I have something between “indolent” and progressing. In November I will “celebrate” ten years with this thing. I say celebrate because at the time of diagnosis I had no idea if I’d live 2 months or 2 years. So I’m lucky. I have similar views on therapy. I haven’t been treated yet, though I suspect it will happen within the next 2-3 years. But I am in NO rush. The “window” as such is still open for me. Although I’ve been encouraged to think about treatment, I know that since the CURE you speak of is not imminent, the tickets on this train are not round trip – they head in one direction only. So keep options open, and buy a ticket when it’s time.
Thanks for sharing your thoughts – appreciate it.
DR. Rick and Chaya:
My husband is one who watch and waited a bit too long.He has had cll for about 8 years on watch and wait. Yes, he has been going to work and I am seeing him tiring more. the last vist to the cancer center, we talked about getting treatment. This is the first time we ever heard about complications he could have. I was so discourage by this hospital that I opened the phone book and found another dr. My husbands counts are now 500,000 and hypo gycemic, he had a bone marrow done, and going into the hospital for luekaphensis, so he can slowly start treament, if this works. This new dr. said if we had went with the “standard”fcr protolcal that was presented to him that he would not be around. Seek as many drs for second or third or fourth opions if you are not arund a big clinic or have the money. He just turned 63 and this is our only means to try now. I am angry at the hospital clinic as I would take questions and articles in from Chaya. It was always you read too much.
Thank you Dr for your honest comments and I pray for your remission and Chaya continued research that is filled with love, Steve
Beautifully written, Rick.
The physician who also became a warrior through a walk-about with CLL.
Jenny Lou
Thanks for your remarks. They have a weight to them that makes your insights of special value.
In my own case, I was diagnosed seven years ago. I am 50 pounds lighter now, have suffered a pathological fracture of my femur, neuropathy, gall bladder removal, pulmonary effusions, and a broken shoulder from a fall. This past December I started FCR. Prior to that it was mostly low dose Rituxin. I’m doing well after three rounds, and my onc is thinking about holding off until my counts or symptoms surface again.
It has not been easy, but like many who have CLL, you fight through the bad spots and push on as best you can. I see that spirit in you, and, hopefruly, it will inspire others.
IG
Rick,
Very well said. I agree whole heartedly.
However, I would not give up a chemo cure from an unexpected direction, as medicine becomes better and better at recognizing the common functional weakness in a CLL clone.
I hope we see a time when therapy will be become even more individualized, with cocktails based on more detailed genetic and protein mapping.
In the meantime. the balancing act is between how long should you wait or how much toxicity will you chance. It is all risky business.
That answer is as unique as it is unproven. I chose to move my risk up front with an early transplant, but that plan is now entering a second phase as I deal with my early relapse after failure to engraft.
I have a friend with metastatic breast cancer. I don’t envy her prognosis, but I do envy the fact that when she saw three separate specialists, they all recommended essentially the same treatments. That unanimity is never seen in CLL
Thanks
Brian Koffman MD
I think my experience supports at least some of your arguments. I’m a 12-year veteran of CLL/SLL, age 82, and, from the usually brief remissions I’ve had from many varieties of TX, I assume I have an aggressive form of the Beast. I only know I was once told I was unmutated and ZAP70+. In 2007 I had 6 rounds of R,F,C lite. I was thrilled that my CBC counts stayed in the Normal range for a full year before starting to inch upward. Alas, within 45 days of the 6th round, lymphadenopathy had become obvious and kept increasing until I had a goodly amount of steroids to address an unrelated(?)leg infection (cellulitus.) Now the goal is to clean out the lymph system w/o screwing up the marrow – or my life. This is such a fun game.
Fred H
Rick,
Your comments were very upbeat and honest to me. I was diagnosed with CLL/SLL in 1994 at age 61. I was w&w for eight years. Then treated and had numerous complications.
“Chuggin” along till a few months ago. I had rituxan and chlorambucil. Against my oncologist’s advice. I responded well almost immediately.
No aggressive chemo for me. I will be 76 in May and still have many projects to do. I am a very active senior and want to stay that way as much as possible. As you, I know the score and deal with it as upbeat as possible. I do take care of myself and active in groups like this to keep up with the facts.
Thank you for sharing your very valuable advice and experience.
Rita
Rick
Thank you for the open & honest commentary about this disease. Each of us travels the CLL path differently. I was diagnosed in 2000 & had PCR in 2004. So far, I am still in remission – 5 years! For that i am very thankful. I know that soon I will have to make another choice, and I know that the choices are still not there for me to have a better option other than chemo. My hope is that I will make it for the next go round with a newer immunologic therapy.
My thoughts & prayers are with you on your journey as well.
Anne
We are all riding a technology wave, trying to stay alive long enough for a better treatment–or even a cure–to emerge.
When you first get cll, there is a natural tendency to think “transplant,” because that is the only known cure. An e-mail exchange I once had with P.C. Venkat and another with Dr. Hamblin disabused me of that way of thinking.
I’ll just ride the wave I’m on (a very good remission from FCR) and hope for the best.
Rick
Thank you so very much for your wonderful article. The “thing” that I love most about Chaya’s web site is that pertinent, timely and honest information has always been published. This “site” has been our (my wife’s and my) primary source of great information about CLL over the past 3 years.
I was diagnosed with stage 4 CLL a little over 3 years ago and at that time I was put on the FCR-Lite protocol. I could not continue with the Rituxan treatments, as I was having severe allergic reactions. With the exception of my immune system being suppressed (virtually I have no: Igg, Iga, Igm), and some periodic illnesses and infections, I have thankfully been in remission and relatively healthy for the past 2 years. I do receive an IVIG treatment every 4 to 6 weeks – to temporarily try to boost my Igg levels. I fully realize that nothing can be done for, or about, my Iga or Igm levels!.
This past fall (Fall of 2008) I under went comprehensive testing (including the “ever popular” bone marrow biopsy) and was “approved” to have my own stem cells harvested and frozen/stored for possible future use by me – if, or when, I come out of remission and may need a “transplant” *an autogous transplant). From my wife’s and my research the “harvesting” was done as a “safety/security net” for me – which hopefully I will never need to try, or to utilize. But, if I do, this will now an option which will be available for me to investigate. If I did not have my cells harvested, in the future I would always wonder if I should have!
Again, I would like to thank both Chaya and you for writing and publishing your great article. I hope that “we” can read more from you about the topic that is “near and dear” to all of us – who religiously utilize Chaya’s webs site.
Thank You!
Alan
While I wouldnt wish a chronic disease on anyone, I find you always get more sense about your disease from a physician who is also a patient. So it is with the super article by Rick – many thanks! I was diagnosed with CLL about 2 years ago after a change of location and therefore of medical staff. I count myself vey lucky in the primary and secondary care I receive now (I’m in the UK and therefore one has a general practitioner who one sees first and fairly regularly, and if need be, a specialist team at the district hospital). FCR was good for me except that it was tiring at the time, and I did get virus reactivation (shingles). But now I’ve got my life back, at least for a while, and I’m pleased. VERY BEST WISHES to everyone else, and thanks again to Dr Rick.
Lawrence
(Cornwall, UK)
Thank you Dr. Zelnick for your well thought out and well written perspective. My view is that you have to take control somewhat of your own treatment. You have to know what your priorities are and what you really feel your body can take. I have indolent Cll/SLL and was diagnosed in December of 2002. Being Stage for with bulky nodes my first treatment was Rituxan and Fludarabine which was an utter failure. All it did was give me the gift of some permanent side effects. Next I had CHOP and that gave me a 1.5 year partial remission. Then Chop minus the Adriamyasin lasted about a year. Then had that same mix a second time on my request as the Dr was pushing me toward a transplant. I got 3.5 year remission this time with Chop minus Adriamyasin. When I looked at Transplant number one I didn’t have the 1/2 million dollars for it and secondly Fred Hutchison in Seattle was more interested in the money and medical business then in my survival. They tried to push me into a transplant with a very very poor donor match. I believe I would be dead now if I have listened to them as survival rates with poor matches is terrible low. Anyway I just finished my fourth treatment of Chop minus Adriamyasin again but adding in Rituxan. My first two treatments and scan indicated the mix still does something for me. I will know more at the end of the month how really well it did. That is a bit of miracle in itself that CHOP is still working somewhat. So all in all I am following my instincts here and trying to maintain as much livability with Cll as I can. God willing I am not finished here just yet. Kit Jors Moses Lake Washington
Rick,
Thank you for sharing your story. I was diagnosed 2 yrs. ago at the age of 57, and also carry the 11q deletion. I’m still in watch and wait mode, my only clinical sxs. being some annoying nodes in my neck. I am doing everything I can to stay well and strong, drinking my green tea every day, hoping to avoid treatment as long as possible, in order to delay the slippery slope I envision once treatment begins. I have confidence in my hematologist, she doesn’t blink when I ask difficult questions, actually listens to my concerns and checks in with the folks at Dana Farber on my behalf, so I feel blessed in that way.
I have found that most people don’t understand this disease, and so I haven’t shared my diagnosis with more than my family and a handful of close friends. So, it is helpful and comforting to “hear” others’ experiences. It doesn’t change anything, but makes me feel less alone with this burden. Thank you for sharing.
Kathy
Rick & Chaya,
I am a newly diagnosed CLL patient (6 weeks ago). I had a routine CBC to refill a thyroid Rx, and came out with CLL (after two weeks of testing, including being referred to an oncologist, CT scans, the “dreaded bone marrow biopsy”, etc., etc., etc………we all know how it goes. Talk about a little shock! I didn’t even know exactly what leukemia was, but thanks to a lot of research, and Chaya’s site which I am SO THANKFUL for, I have gotten quite an education. Actually, more than I ever wanted to know about CLL and cancer! I want to thank you for giving new patients like myself such insight into this complicated monster. I will be making many decisions in the future, and reading articles written by educated professionals like yourself make me feel more secure about the very personal decision making process. I was told I was “lucky” to be a stage 0, but I don’t feel very lucky to have a disease that doesn’t even have a cure. How do you put “lucky” and “cancer” in the same sentence? Somehow, I can’t quite wrap my head around that. But, I do feel very positive and am living my life as close to normal as I can on watch & wait, with blood tests every 3 months. My first recheck will be in May. Again, thank you for sharing this current information with all of us. Nancy Hammill
Rick,
First of all you wrote a great article. Any time that there is a forum where debate is held regarding treatment of this cancer it will benefit all who read it.
It sounds like you have determined to go the monoclonal route of treatment for the time being. That is what my local oncologist wanted to do. Rituxamab for every 8 weeks until platelets and Hemoglobin returned to normal levels and WBC count decreased markedly.
My Mayo Doc wants to do FCR in hopes, I think, of a nice long remission. Upon further study it seems to me that FCR may just be a one time shot. Is that what you meant by “big guns” or were you refering to HSCT?
How did the monoclonals affect your numbers?
Is there a downside to just doing monoclonals by themselves before involving mustard?
Kind regards,
Mark
Rick,
Thank you so much for the straight forward letter. I found it very encouraging. I’ve had CLL for eight years. I believe your approach is the best one and good advise to follow.
Thanks again for thaking the time to write the article.
David
As we all know too well, “life goes on”.
I was at a family event all afternoon and evening and just now got back to my laptop. Wouldn’t you know it bit my wi/fi service is down, so I am using my iPhone to read all of the replies and to send this brief acknowledgement.
The interest of all of thar who replied is most appreciated and I will try to respond to some of the comments and questions in a day or so when my wi/fi service has been restored. Smart phones do have their limitations.
Rick
Rick –
Well stated my warrior friend…
Denise
Thanks for your comments Rick,
I was diagnosed with CLL in ’99 and was only told “this is the cancer you don’t have to worry about, because no one ever dies from it”. Upon internet study I was able to find out some slight bits more about it, but not until I discovered Chaya’s website in late 2006 did I realize there is more to this terrible affliction. I am amazed at how much information is unknown to the people in oncology who are treating this disease. I still don’t know all of the alphabet soup being talked about, but I do have information I take to my Dr. from CLL Topics to keep him informed as to what is really happening. I will take a copy of your letter, if I might, to give him some new insight. Thanks so much for writing, and providing your views on how you are approaching treatment. Good luck and long life.
thanks, John
Dear Dr. Rick,
Thank you for your article. There are decisions to be taken based on circumstances and patient’s attitude. My Father, 72 was diagnosed about 2 years ago with indolent CLL-more of SLL. He was on wait and watch and then his Hemoglobin started dropping. We decided to treat him first with Rituximab alone-as this was least toxic and then with little improvement we went ahead with FCR.
My father said there is no point in worrying but rather go ahead with what is required. He got infection after the second cycle and was hospitalised and has now completed 5 cycles. His lymph nodes have reduced and blood counts are good.
In contrast his sister was diagnosed with AML at the age of 74. But her family did not treat her because of the “myth” associated with the chemotherapy and allowed her to pass away.
Ofcourse the cancers were different but it is question of attitude. One talks about quality of life but if there is no life then where is the question of quality?
My father works 16 hours a day and is spending lot of time in setting up Marrow Donor Registry in India which is not there.
So it is also question of attitude.
Thanks
Hiten Jhaveri
Thank you for the straightforward statments you made in your lucid article. Chemtherapy is a dodge ball approach for most of us.
There are no solutions that are more appealing unfortunately. May be some better therapies will come soon, but not a cure. I hope I am wrong. This is not to say we should lose hope.
Again, thank you for your article.
Rick,
Thanks for the excellent article.
CLL, as I see it, is quite heterogeneous. Being a “liquid” cancer, as you put it, allows it to hide throughout the body and evade treatments. Adding to the complexity is the fact that, even though we have identified all these chromosomal and gene mutation variants, we currently have no way to predict how people will progress or respond to the various treatment regimens out there. That is why there is no such thing as an “expert” on CLL and every center has it’s own concoction of chemotherapy or transplant which they recommend.
This is coupled with the also unpredictable toxicities from the chemotherapy regimens and the “fallout” effects on the other bone marrow cell lines which are also affected by the drugs, since we have no bullet which targets only the B-cells.
Also a physician, I elected to take a shot at remission with PCR followed by Campath consolidation. I am still debating if this was a good choice, as I did get a partial remission but almost died from PCP pneumonia secondary to the immunosupression which is still present 1 year later. To make things worse, the CLL has decided to deal me one of it’s notorious side complications, ITP, which has currently taken priority as my chief problem and lifestyle modifier.
CLL is not one disease, it is a group of overlapping conditions (CLL, SLL, AIHA, ITP, “penias”, aplasias, etc.) which strike in varying proportions.
The only things certain about CLL are the uncertainties of it’s course, complications, and treatments.
Thanks for sparking this discussion.
Ben Malkiel
Rick,
Thanks for being prepared to be so open about your condition and sparking this debate.
I am 57, diagnosed 7 years ago with a WBC of 14 and it is now 120, with none of the more complicated chromosone conditions I am in W&W but pondering all the available options as the blood count mounts.
I have to say it is thanks to Chaya and PC that I have the knowledge to ponder my options and am not simply being led by the nose by someone who only knows the theory which could so easily have been my situation!
It does seem to me, from all that I have read, that the only ‘cure’ is a transplant but this is a very high risk option. Therapy could complicate my current condition but leaving therapy until my immune system is too compromised to deal with it is not a good option.
As many have pointed out, medical opinions seem to conflict not just as to when to treat but with what and in what doses etc etc – it is all very confusing.
Personally I find it very helpful to read other people’s stories – here we are dealing with fact and not opinions.
Best wishes to all
Graham
Rick,
Good stuff, thanks for taking the time to write this. It does seem to be a waiting game of sorts, but need for action when necessary. I am heartened that we have options and in a sense the time to weigh through them with this disease.
Hoping the best for all. John
Anne
Dear Rick,
I really appreciate your straightforward description of your CLL.
I am really reading everyone’s notes very carefully as I am considering entering a Phase I Clinical trial for a drug called clofarabine. I am in watch and wait at the moment. I was first diagnosed with CLL in 1992 and treated with CVP and had a twelve year remission. A second treatment was CVP plus R. Had a partial remission. Then was in a clinical trial with a drug called gossypol, but made me very sick and and I dropped out. My health is pretty good at present with gradually increasing white blood count and decreasing red. I am age 77. I have increasing small lymph nodes in my neck and of course elsewhere. I have difficulty sorting out the likely downside of treatment and the hope for improved health. I also find it difficult to sort out my own needs from those of the research institutition.
Thanks for sharing your story.
Anne
Rick
Thank you so much for your comments. As a nurse I had never seen a patient with CLL as I worked in the ER and we never saw these patients. So when I was diagnosed with it, I knew absolutely nothing about it. One onocologist advised me, not to go reading on the internet and please don’t bring me anything you read. He said, “I’m the Dr. and I will tell you.” I changed Dr.s to one who will now answer my questions. I can only say that Chaya’s information has been more information than what Dr.s tell you. Having this contact and seeing so many people involved in Chaya’s web site; one realizes they are not alone and we all walk this path together; maybe a little differently but still together. It is nice to see an M.D. who is so honest and can admit that he did not know a lot about CLL also. I wish you best on the road you travel. It is nice that so many people with CLL can share together.
Deb
My thanks to everyone for a very informative article and follow up comments. I have a 13- and 17p- deletion and waa diagnosed in 1995 and left as a watch and wait until 2004, when I was given Cytoxin/Fludarabine. Was in remission until recently, and now doctor is suddenly taling about enrolling me in mini allo transplant, which caught me off guard as I assumed we would try at least another round of chemo before taking the drastic transplant step. Chaya’s website has been very helpful to me in composing questions to ask my hematologist. I am still trying to understand the supposed downside of trying at least one more round of chemo treatments before attempting the risky mini allo with no sibling donor. It’s frustrating that every center wants to talk about their own program, not all treatment programs out there.
Hello 11q Rick, If my memory serves me correctly my husbands CLL/SCL profile is similar to yours. He is rapidly approaching time for treatment, within 3-6 months. I noticed that you did not receive the “C” part of treatment only the FR. Is there a reason for your decision not to have cytoxan along with the F and R? While any type of transplant is considered high risk I always wondered why you would weaken your body with caustic chemotherapeutics only to need transplant sooner or later in order to have a decent chance of survival instead of going to transplant while your body is still in fairly decent shape?
I wish you the very best as you and many others continue to slay this dragon once and for all! Thank you for always availing yourself to our questions on the CLL forum web site. Eileen, wife of 11q del cd38+ zap70- IgVH UN-mutated
Hello Rick,
Thanks for sharing this. I am ‘caregiver’ for my husband diagnosed about a year ago at age 47. Still W&W, feeling good, no symptoms. We have the good fortune to be able to take this ‘down’ time to learn from others, and we so appreciate your cogent presentation. He has the 11q deletion, and a 13-. ALC still low, as is WBC count, and no other numbers even out of range. Tried to have the ZAP & mutational status, but there were not ‘enough cells’ in the sample to make the determination at that time (Oct 2008). Will re-test in Sept.
Good luck to you, and keep us in the loop if you are so inclined. And thanks to Chaya for keeping ‘Topics’ going!
CherylW
Dr. Rick,
Appreciate your candid and insightful comments concering this affliction. I was diagnosed 5 years ago at age 44, which I’m told is below the norm. My Onc has also given me the W&W therapy at this time. Recently my WBC had become somewhat elevated to 40K+, higher than has been, but a recent CT was negative. It has not fallen into the doubling strategy as of yet.
This past weekend I attended a Lymphoma seminar created to educate on the various lymphoma’s affecting the populus. There were Dr’s from U of Arizona, and others around the country, including a Dr. Pagel from the Fred Hutchinson Center in Seattle.
There was some insight to his presentation, but I to came away with a sense of uncertainty, but with some hope nonetheless. This disease truly seems to be a moving target and unique to each individual.
I apprecitae your comments and “Thank” Chaya for giving you a forum for your experiences.
Eric b.
Hello Everyone,
My internet service has been restored and I’ve read through all of the commentary. I must admit to more than a little trepidation when Chaya graciously asked me to write this piece, but the responses have been very gratifying.
The most important message that I have gotten from all of the commentary is that those who took the time to write all were more or less on the same page, even if some of our ideas may differ a bit. Through the years I have always learned a great deal from all of my patients and now I am also learning a great deal from my fellow CLLers.
Some of the commentary was bittersweet, especially Fred’s comment that he felt “fortunate” which seemed to him a “funny word” to use, and Nancy H’s query as to how could one ever use the words “lucky” and “cancer” in the same sentence?
I don’t think it would be appropriate to try to address every issue that was raised, but I will deal with several of them.
Dr. Koffman raised a valid point about the future of cancer therapy (not limited only to chemotherapy per se). I do agree that treatments in the future will more often be tailored to specific genetic differences in certain tumors (such as the BRCA gene in breast cancer) to utilize those treatments which are more likely to work best in a given individual.
There are reasons to believe that at some future time, vaccines which are individualized (similar to the Memgen vaccine) may be useful along with chemotherapy to treat a patient’s tumor more specifically. Targeted differences may also be employed to attack some tumors (think CLL clones) that lack certain genes and hence fail to produce certain proteins.
There are many new treatments being looked into, including newer monoclonals and SMIPs, PARP 1 inhibitors and others. Another promising approach includes methods (such as some of the current Abbott drugs) to mobilize CLL cells from their protective lairs in bone marrow and lymph nodes.
My only concern is that these newer techniques are not ready for prime time and may not be useful for many of us who already have “skin in the game”.
To answer Eileen’s question, I must point out that she misunderstood what I wrote. I have never had any fludarabine or cyclophosphamide. The use of cyclophosphamide is of value in many protocols, especially when given in concert with (or recently as a follow up to) fludarabine, and, most especially in patients with a lot of lymphadenopathy.
To answer Mark’s question: for better or worse, I chose to begin treatment with a combination of alemtuzumab and rituximab because I had rapid growth of the CLL in my marrow and peripheral blood without too much adenopathy and was aware of the results of research done at the Mayo Clinic and Northwestern University. I did not, however, follow the exact protocols in place at these institutions. I have been fortunate to have had a fairly good response overall, but have no idea what I will do when the need arises for more therapy in the future.
This brings us to the final question that I will address. When I spoke of saving the “Big Guns” I suppose that I was referring to something akin to FCR ahead of a SCT.
I look upon the process as all part of one plan, because I believe, given my known prognostic indicators and the course of my disease to date, that much will depend on how I respond to that first course of FCR. If I am fortunate to have an excellent response and a good remission, it will likely be reasonable to delay HSCT until a second course of FCR (or equivalent) is required. If the response is less than stellar, it will be prudent to move directly to the transplant. In fact, the duration of my current remission will certainly influence whether I try the use of monoclonals only again.
The key in dealing with a disease like CLL is to be well informed and “nimble”’: that is, prepared to seize the moment when the “sweet spot” for any given treatment has been reached. This is the challenge for all of us and for those physicians who give us medical guidance.
Good luck to all,
Rick
Rick (and Chaya):
Thanks again for your well written and thoughtful article and reply. This type of “forum” (CLL Topics) and the exchange of “CLLers”: thoughts, comments, questions, ideas, experiences, etc.- is absolutely essential for all of “us” – who are “members of this exclusive club” (and for our family members and care givers also!).
The lack of information, communications and exchanges of ideas and experiences about CLL – between “us” – regarding our disease (and the “Heinz 57” varieties of the disease that exist) is something that is grossly lacking in most communities and at most cancer centers across the country. It is very comforting for me to read about “others” experiences and thoughts. It helps me to realize that all of “us” are in the same boat!
I am hopeful that some how Chaya and you will be able to continue – and to possibly expand – your “Guest Article” into some type of periodic series for all of us to read, to reflect upon and to submit our personal comments and experiences to.
Please keep “us” posted as to your progress, experiences and thoughts.
Our thoughts and prayers are with you , and for all of “us” who are members in this “exclusive club”!
Thank you!
Alan
Dr. Rick,
A very valuable discussion to follow. I liked the way you sought out a protocol based on the way your CLL presented and added to the discussion of the value of a different therapy including cyclophosphamide for folks with much lymphadenopathy as therapy needs to match as best you can a host of markers and clinical presentation factors.
Sometimes I feel that I have gotten bogged down in the choices of therapeutic agents available and not paid enough attention to the way in which these drugs could be used. Example: FCR or FR – which should be used first and at what rate and what dosage? What does research have to tell us about efficacy with different usages?
Some hope is to be given that in waiting for a cure many subsets of CLL patients may gain much time and good quality of life by a more intelligent use of current drugs. Example: in pediatric ALL I believe a huge measure of durable remission was accomplished by tweaking the drugs used back in the 70s with no new added drugs.
I think all would benefit from a drug use discussion as I have found local oncologists unaware or unable to discuss with knowledge this issue.
All our dilemma revolves and can be partially solved around more in-depth patient testing. To this end I have signed up for the NIH-NCI trial #NCT00769743. My apparent Discordant disease profile makes choosing the best cup-o-poison treatment option particularly challenging.
Thanks for your candid and informed input.
WWW
My People,
I’ve had over a hundred Rituxan infusions. Immunotherapy has worked to continually push the wbc and nodes down. An approach that triggers the immune system is sensible.
I could never get the red iron pills to work. Floridix, a liquid vitamin with iron, pulls my rbc up. Every oncology visit I’m talking about lab mice and cures. From the reaction, I don’t believe there is too much fever in the medical community to cure this thing. It will probably be one of us, with instinct and information.
All good things.
I soak up all the CLL websites…. especially Chaya’s. I read with deep interest the trials and various iterations of fellow CLLer’s with the amazing variety of markers, treatments, reactions, complications, hardships, decision dilemmas, physician experiences, sad passings, etc. Then I look at myself and say, “Why do I feel like I’m alone on a scary island not suffering really, while at the same time blessed to be in the boat with so many generous fellow travelers willing to share so much helpful and personal information.” I’m still asking myself that. I don’t know why I keep feeling so good in the face of my many treatment prtocols and a HSCT in 2005, which I sailed through with few issues. I have none of the cytogenetic abnormalities. I’m mutated, ZAP 70 negative, etc. So, should not I be indolent and watching and waiting forever … with little treatment, if any? Not so. Since my diagnosis at age 48 in 1989, I’ve had very few problem issues save fatigue and a variety of opportunistic infections. Nevertheless, my WBC and absolute lymphs march to a an aggressive CLL beat and make doubling time seem like a piker’s league. I’m in the quadrupling time league. As a result I’ve gone down many roads … all to treat the escalating lymphs and declinig reds. I first did extensive chlorambucil; then Fludarabin; then FRC with Michael Keating; then a variation of things (single agent cytoxin, single agent rituxin, campath) til I was no longer responding. In 2005 I did a stem cell transplant at Dana Farber (brother donor). It was looking splendid for a year then relapse. The good news is I’m now responding again to treatment. Campath has recently given me over a year of remission and feeling great. Today my numbers are off the charts again. Next week I start Campath again after a bunch of coin tosses by two Oncologists on what to do. I hope it works again. I was accepted in the CAL-101 clinical trial at Dana Farber, but the round I’m targeted for can’t start until mid April. Because my counts are now perilous I need to pass it up and start the Campath. What is my point to all this? It is this: How come I feel so good after so much treatment, while others suffer so with other varieties of CLL and its treatments? I feel like when I’m at the end of the road I’ll be waving with a content smile as my ship goes down. It’s crazy!
Thanks Rick for your great input. Thanks Chaya for continuing to be here for us all.
Bob Larkin age 67
North Branford, CT
Bob,
I am amazed at your story. I was also first diagnosed when I was 48 in 2004. I had always thought that if you made it through an HSCT that it was a “cure”. I had no idea and am so sorry that yours was not a cure. You have a very great attitude and I think it is great that you are keeping your spirits so high. I am just about ready to start my first treatment of FRC coming up here in the next month or two. We all have very much to be thankful for. I just brought my 14 year old daughter home from Children’s Hospital in Denver. She was septic with a staph infection and now has a picc line in for IV Antibiotics every 6 hours for who knows how many weeks. I would trade her place for mine in a heartbeat if I could.
Thanks for sharing.
Mark
Bob’s story brings up three important points…the heterogeneity of this disease and it’s variable response (from individual to individual) to any given therapy as well as the unpredictability of the outcome of HSCT.
Those of us familiar with PC Venkat’s tale and that of Brian Koffman can attest to that.
The yin and the yang of MUD vs. sibling donor (as Bob L underwent) is the decreased rate of successful engraftment and increased relapse rate with sibling donors vs. the increased difficulty with GVHD with MUD transplants. Cord Blood transplants have their own set of issues, but offer a great deal of hope to those in need of them.
In my case, my brother is a perfect match and my family feels that I am ‘lucky” (there we go again using that word). I realize that I am lucky in many ways, but don’t relish the need to take all of these risks and the potential downsides of a less than ideally successful transplant as Bob has already come to understand.
In the meantime, i’ve asked my brother to wear his seatbelt and to avoid pursuits such as sky-diving!
Good luck to all,
Rick
Rick,
I am less than two weeks away from the start of my transplant. I am “lucky” like you in that my only sister was a 10/10 match and will be my donor. Since I am at the Hutch and most of the data regarding MUD v related donor relapse rates comes from the Hutch, I asked my consultant for his take on the data. Was it worth searching for a MUD? His take on the data was that it probably isn’t as clear cut as it appears in the journal articles. He felt that the patient populations were divergent enough to explain the differences in the numbers rather than the source of the donor. He felt that the related donor group had more patients with unfavorable disease load levels but could still try a transplant because there was a donor (even a 50-50 chance is better than no chance). He also felt that there were less patients in the MUD group in the same situation because the lack of a good MUD match.
Even if there is a relapse post related donor transplant, if you remain in decent shape, you still may have a shot at a MUD. You may have also bought a couple more years for treatments to develop. Just like everything else in the treatment of CLL, a lot of the data is missing and the data that is available is limited. I’ve seen too many abstracts promising novel treatments for diseases that have never resulted in published articles or much needed follow-up studies to verify the results in my carrier to get too excited about limited data.
Like many patients, I would not be here at this time if I had any other viable option. Even so, I would like to tell Bob that he is not alone. I have remained in great shape and have not experienced any of the unfortunate complications that many have faced. I was able to continue my practice through the chemo treatments and up to the point that I left for Seattle. My only CLL sin is that my mesenteric node did not respond to the usual treatments. I choose this center for transplant over the others mainly because the researchers here are interested in using Zevalin as part of the conditioning rather that the usual suspects. Given my previous response to the standard drugs, I felt that I would have a better chance to start the transplant with minimal disease with Zevalin conditioning.
We all try to make the best treatment decisions possible given the nuances of our own unique disease. Once you buy the ticket, all you can do is make the best of the ride.
Good luck to all of you,
Steven
Steven,
I appreciate your kind words. I’m also happy for you that your only sib is a 10/10 match. That’s a great win. I have five siblings. Four were not a match. Thankfully one was a perfect 10/10. One thing I did not mention in my post, was that at the time of transplant I did not have minimal disease. On the contrary, my marrow was packed with CLL and no therapy would dent it. That is not a good way to start the ride. My Oncologist wanted me to do the transplant over a year earlier when I had minimal disease. I had insurance issues that took a year to work out. Had I done the transplant when advised to, I am confident a much more effective outcome would have ensued. As it is, I squeezed the maximum benefit from the transplant given my aggressive CLL state going in, so I’m counting my blessings. I am definitely a transplant advocate.
In two weeks you’ll be handing the conductor your ticket. I think you are in for a good ride because you have minimal disease; you have a great sib match; and you are at the Hutch. I also like the sound of the Zevalin conditioning approach.
Best wishes to you, and thanks again,
Bob Larkin
Steven,
I certainly wish you all of the luck in the world going forward. I appreciate your input about the possible ‘sampling’ bias in the studies of sibling donor transplants vs MUD transplants. It certainly makes sense.
I am intrigued about the concept of using Zevalin as part of the conditioning prior to HSCT and will have to research this. Off the cuff I can’t recall what the half-life of the isotope is, but I imagine that it is short enough to allow it’s use (and hopefully powerful enough to wipe out most of the residual CLL) prior to HSCT.
I would be most interested in how you fare. If you care to, get my email from Chaya and keep in touch. I have begun my transplant search on the east coast (closer to my home) but am not committed to any particular place definitively, so could consider fred Hutchison if there are compelling reasons to do so.
Best Wishes,
Rick
My thanks again to Steven Karan. With a little research I have been able to learn a lot about the use of Zevalin in conditioning for HSCT. I must admit that I have spent far more time researching information about CLL/SLL and it’s treatment short of HSCT that there is much about HSCT that I will need to learn as the reality of this course of action becomes closer.
Overall I have found that the literature regarding transplants is far more complex that that regarding the rest of the CLL universe.
Rick
Rick,
In your east coast search definitely consider Dana Farber in Boston. They are among the elite for CLL/transplant expertise in my opinion. I had the good fortune of having Joe Antin as my transplant oncologist. He is the head of the team there, I believe. I recommend him highly. Feel free to use me as a reference.
Bob Larkin
I am not sure if this is the place to ask this or not but…..I have a sister and brother and I was wondering what they have to go through to find out if they are a match for SCT and then what they go through when the transplant is performed?
Also, what is MUD?
Mark
Mark,
MUD stands for “Matched Unrelated Donor.”
Tim
Mark,
My siblings first gave a blood sample to their local blood lab or physician. Each sample was forwarded to the transplant facility to be processed to see if there was a match. After a couple weeks one brother was deemed a match. As I recall, he had three visits to the transplant center, at the last of which he donated stem cells. He said it was just like giving blood, only a little longer. He felt it was an easy process, except for a brief period of feeling mildly “flu like” from a prep medication he took about three weeks before donating the cells. Hope this helps.
Bob
Mark,
Thanks for asking the questions about what siblings have to go through to be matched, and then for the transplant. I was wondering the same thing as I have two sisters who have already said they will do anything for me when the time comes. All my best wishes to everyone who has donated their time and talent to this site, Nancy
Hi, y’all
I too am a Physician, Primary Care, 55 years old male, diagnosed with a self ordered CBC in 2005. I recognized that the Lymph % was 48% with a White count of 10,000, Hemoglobin of 15gm%, and Platelets of 150,000.
Looking back over previous 5 years of CBC’s I realized this was borderline for 2-3 years before. I have probably had CLL for 6 years now. I called an ONC friend and ordered a Flow Cytometry. 1 week later my life changed forever when I found out I had Poor Prognosis CLL, all the bad markers except for FISH which was normal. I immediately set up appointment with Dr. Rai who ordered some more tests and a Bone Marrow Biopsy. He told me Marrow was 95% infiltrated. Just watch and wait.Wont need treatment for awhile.I was happy to abide, but devastated just the same. I became a Green tea Fanatic until my platelets dropped to 70,000 then I cut back, dont know if it made a difference. I decided in 2006 to get a 2nd opinion from Dr Keating in Texas. He was ready to treat me right then . I panicked and headed home to Dr Rai to get his input. He called Dr Keating and they both decieded because I wasnt having symptoms to leave me alone. My WBC was still 10,000, Hemoglobin 14gm%, Platelets 80,000. I lost 40 pounds by going to the gym and diet. I never felt or or looked as good as that. I had my first and only CT scan which showed enlarged 18gm spleen and several lymph nodes 1-3cm. I was diagnosed with asymptomatic H.Pyloris, but failed to respond to 3 courses of antibiotics. I have had 3 Basal Cell Cancers in 4 years, all burned, scraped and Liquid nitrogen frozen, left with slowly healing big scars. First time I knew what slow healing due to an altered immune system was like, I always healed in 3-4 days, not 1 month! Found out my immunoglobulin levels were barely detected. I wondered how could I work as a busy Physician, seeing 180 patients per week and not get sick all the time? Over past year I got 4-5 sinus infections but hit them immediately with Avelox. Recent URI(probably Pneumonia) took 2 weeks and simultaneous Zpacks and Avelox, now gone. Recent visit to Dr Rai reveals slowly dropping hemoglobin to 11.5gm%, Platelet count 35,000 and WBC 27,000. Spleen is enlarged and now palpable. Lymph nodes have grown 1-2 cm in neck and armpits. I still go to gym 5 times per week, see 180 patients per week, and lead an active dating life( stamina great !)
He is having me come back in 3 months. Feels I will need RFC ( both Dr Rai & Dr Keating felt this will be my 1st cocktail).
Yes it is inevitable, I am frightened more by the fact that my work habits and other activities might be curtailed. I feel very strong both mentally and physically and I am ready to go to war with the beast and yes, I’m a little scared too! I get up every morning wishing this was one bad dream!
Diagnosed in 04 but had WBC of 13.5 in 02 so probably have had it at least 7 years. I also see about 120 patients a week practicing Dentistry. Wear a mask, glasses and gloves on every patient as I have since before Diagnosis.
I am a frequent consumer of Valtrex since I have a cold sore virus or some virus symtptom every few weeks. The Valtrex seems to do the job as long as I get it taken in a timely manner.
When I take green tea capsules I get much less viral activity and need almost no Valtrex. I cannot explain it but it has worked so far on the small stuff.
My WBC now is 191000, Platelets of 90000, Hg of 11.7. I have no pos nodes as of yet and spleen is not palpable to my knowledge.
I would take more green tea but I do have some stomach issues when I take a helpful dose(4 caps 2x per day).
I did a clinical trial for Green tea(6 months) caps and that is how much I took at that time.
I am not sure how much has been discussed concerning green tea on this site but I would like to know how many of us have used the capsules.
Regards,
Mark
Mark,
It certainly seems as though the EGCG has been helpful for you. It did not make any difference for me. My impression is that the benefit varies from patient to patient, obviously for unkown reasons. part of the problem may be inconsistencies in the dosage of EGCG actually received. The mayo Clinic study clearly got past this problem, but they haven’t given us clear cut guidance as yet.
The other side of the coin, however, is that your CLL has clearly progressed despite using the green tea capsules, so it’s not a cure, only an adjunct.
Dremrick,
Best of luck. I admire your energy. I’m not sure that I would be up to the “dating scene” even if I did not have CLL!
Good luck to all,
Rick
Dremrick,
Just curious, but why not Mohs surgery for the skin cancer? I had three basal cell carcinomas removed this way last September after a CLL diagnosis in June. (In fact, what got me in to see a dermatologist was reading Chaya’s discussion of CLL and skin cancer in CLL Topics. Thanks, Chaya.)
Tim
Tworrall
My BCC’s were 3-4 years ago, one in fact before I found out about the CLL.
I went to a general Derm and that is what he recommended( D & C ). I go to a MSKCC ( Sloan )based Derm for twice a year check ups & still see a general Derm friend.
I watch it very closely now. The way I heal now, I’m not sure I want to look like Chucky!! But I make the final decision how I want it treated.
Take 1-2000 Vitamin D3 every day, I havent had a lesion in 2 & 1/2 years,
only an early AK on my nose and the Sloan guy D & C’ed it. Gave me the option of Mohs, I turned it down. That was 1 & 1/2 years ago.
Drem
budh Rick: Thanks for sharing your CLL experiences. I am 75 years old. As yet I have not been treated but may need to be soon. You suggest that at my age being content going from one thearpy to the next, trying to avoid unnecessary treatments. I agree. But what are these thearpies? Based upon your research if treatment becomes necessary do you have an opinion as to the least harmful initial treatment? BudH
My mom has been diagnosed with CLL and the onc suggested FCR soonest (WBC 21, PLT 90). I’m in the process of educating myself on how best to proceed and all the commentaries are immensely imformative. The biggest problem I’m running into is understanding the various abbreviations, e.g., FISH, ZAP 70, W&W Therapy, CHOP, etc. etc. etc. Can anyone guide me to a website were CLL-realated abbreviations are explained? Celosiana
Celosiana,
There’s great information for the new diagnosed individual (or caregiver) at CLL Topics, the “parent” site of this one.
Here’s a link to the homepage: http://clltopics.org/index.php
Check out the links on the right-hand side under “Newly Diagnosed?” The first two will get you started and some.
Best,
Tim
Celosiana
Please visit our flagship website http://www.clltopics.org and look up an article titled “What kind of CLL do you have?” You can use the search box at the top right hand side of the home page to find this and other articles. This article describes each of the prognostic indicators you mentioned above.
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