Modern Prognostic Indicators
Less than a decade ago, CLL was the “good” cancer to have. And those were the “good” old days, life was simple and one shoe fit all comers. For a long time, the only drug available was chlorambucil, joined a few years later by fludarabine. Remissions did not last long and since both of these drugs had sufficient toxicity, it made sense to put off therapy for as long as possible.
Sexy biologic drugs such as monoclonal antibodies (Rituxan, Arzerra, Campath) and immune modulating drugs like Revlimid have changed the CLL landscape. All of us are keeping our fingers crossed the next generation of smart drugs such as the kinase inhibitors (CAL-101 etc) will pan out as valuable additions.
You don’t like all this complexity? Well, before you complain about too many therapy choices, just remember these additional choices have prolonged remissions as well as quality of life for CLL patients. Our guys are living longer these days because we understand a lot more about this disease and how to treat it. No one has a perfectly clear crystal ball, but modern prognostic indicators can help shed light on the possible course of your disease. Majority of emails I get from our members are all about better understanding of their prognostic indicator test results.
Often physicians fail to understand that patients need to know what to expect in their lives, for a variety of complex reasons. Are you looking at a short fuse version of CLL that will need therapy sooner rather than later? Or is it going to be OK for you to change jobs now and risk discontinuity in your healthcare insurance? Should you take the kinder and gentler route or declare all out war in your choice of therapy? Which is a better approach to playing the hand you have been dealt? Is it a good idea to push for a stem cell transplant sooner rather than later? What do your prognostics, age and general level of fitness have to say about it? If these and similar questions have kept you up at night, this Workshop is for you. If on the other hand you would rather not know what the future may hold in store for you, I am sure you can think of more fun things to do on a Saturday afternoon.
Spring 2011 CLL Workshop
Subject: Understand Modern Prognostic Indicators
Date: April 9, 2011 (Saturday)
Time: 1:00pm – 5:00pm
Location: Columbia, Maryland.
If you think you are going to be able to attend, send us an email at workshop@clltopics.net to register and we will email you the driving instructions on how to get to the conference hall. The conference hall we rent holds about 55 people and we will register folks on a first-come first-served basis.
As always, attending our workshop is free of charge. If you wish to support our efforts, please feel free to use the “Donate” button. Or bring snacks (fruits, brownies, chips etc) for your fellow attendees to enjoy during the break. Learning about CLL is hard work!
For those of you who live too far away from Columbia MD, or who have schedule conflicts and therefore unable to attend, I will publish my PowerPoint presentation as well as detailed comments accompanying each slide. Some of our more technologically talented members have suggested video recording of the workshop etc. After thinking about it, we decided this was not a good idea. We take patient confidentiality very seriously and some of our members may not want to be video taped. And, I must confess, I am a little shy about video taping myself. I am a lot more comfortable with the written word than in-person showmanship.
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28 comments on "Announcing CLL Topics Workshop #3"
Thanks for offering this workshop. The others have been fabulous.
I look forward to seeing your power point presentation as this is a really timely topic for me!
Dear Chaya,
Thank you again for ALL that you do for the CLL community. We are very blessed to have you for a guardian angel.
This topic needs all the attention it deserves since CLL prognostic indicators are complex and numerous. I was diagnosed with CLL 18 months ago at an early stage and with mostly favorable prognostic indicators. However my WBC/lymphocytes recently increased from 19,000/10,773 to 31,900/19,788 so we did another Flow Cytometry, FISH & IgVH. Very little changed now vs. 18 months ago.
My IgVH is still mutated (4.5% different from the germline). My single FISH abnormality is still 13q4 (bi-allelic in 71% of neculi). I still show low expressions of CD38 (less than 30%) & ZAP-70 (23%). I am negative for coexpression of CD10, FMC-7 & hairy cell markers CD103.
My Cyclin D1 test is negative for IgH translocation.
So we are trying to make sense of my recent WBC/lymphocytes increase especially since my prognostic indicators (FISH, IgVH, Flow Cytometry) have not changed. I had just recovered from bronchitis before the WBC/lymphocytes increase but during the bronchitis the WBC stayed the same. So we are puzzled. We are now doing CBC blood panels every 2 weeks to stay on top on this.
What part do the prognostic indicators play in the overall course & treatment of CLL? Especially since the marker mix can be so different for each CLL patient. Much attention is given to IgVH, ZAP-70 & CD38 along with some of the FISH markers. But I often wonder if the the minor notes in this CLL prognostic symphony play a bigger role than we know. And do some of these minor notes affect the favorability/unfavorability of the major markers (IgVH, ZAP-70, CD38 etc.). The more we can learn about this critical subject the better.
For those of us who live some distance away and cannot get to this conference please make the information available to us in some format that we can study and digest. It’s so important to have access to this critical data.
Thank you Chaya (and all the rest of the CLL community) for all your comments, help & support.
Patti Kruse
Ditto to hpatz….knowing your prognostic indicators and understanding them can be two very different things.
Having blood tests repeatedly at three month intervals may help out my hemotologist, but they confuse me sometimes. Its like reading your monthly statements from your IRA retirement accounts. One time its up, one time its down, I’m fully diversified, but yet I’m not totally happy with my rate of return. Gee, my platelet count has been trending downward on my last three tests, should I worry. My WBC count has been normal for over a year, why was it 11,000 last year?
All this stuff can make your head spin, I find myself not thinking about my CLL at all until its time for my quarterly blood test. I know its better to be informed than to be totally ignorant of this disease and its progress. I am glad you Chaya, have the dedication and intelligence to put this all together in a format that I and the rest of us can comprehend.
Thanks again.
First, thanks for your invaluable information Chaya…it helps me greatly, as caretaker for my husband. He usually doesn’t want to read all this medical stuff, so I stay on top of it as best I can.
Patti, I read your post with interest. Last year, while we were visiting our kids and granddaughter for the holidays, we all got the lung thing going around then. My husband had been holding his own with the CLL since being diagnosed in Oct. 2007, and his WBC would fluctuate around 15,000-18,000. The oncologist saw no reason to worry about it, as everything was stable. However, after we got sick in December, he got worse and worse, and ended up in the ER, where they treated him for what seemed to be pneumonia. He seemed to get better, until we spent several days back at our daughter’s, waiting to fly back to our home. He started getting sick again, and ended up in the hospital for another two weeks. In a nutshell, he did have pneumonia, and they did everything they could to get rid of it, BUT they also finally diagnosed him with BOOP, which is something called organizing pneumonia, caused by an outside, usually unknown origin (we now know it was coming on for months, slowly, but no one could put it together). Once he got the lung illness everyone had, and with his simmering CLL and the BOOP, everything went ballistic. His WBC count/lymphocytes rose while in the hospital into the 30’s, and then much higher. When they finally started treating him with prednisone, and the lungs started getting ever so slowly better, it didn’t stop the CLL from continuing its dangerous path, and the numbers kept climbing during the coming weeks. By the time we got home to Alaska, his WBC was close to 150! They started chemo just about immediately, and he’s now back down to a maintenance level. I guess the point I’m making is you probably should expect a higher WBC when you get sick with bronchitis or similar, because of what it does to your system, trying to fight it. I didn’t know they would re-test for some of the basic FISH, Flow Cytometry, etc., because I didn’t think that information changed during the course of the disease. I suppose of course, anything is possible, and I could be way off. I hope you have leveled out, and don’t need to do anything yet other than monitor. While my husband had no choice but to get these levels down, he could only finish 3 months of FCR due to other complications. On the up side, those three months put him in a nice remission. Best of luck to you, and to all of you on this site! Debra from Alaska
Patti,
To me, your WBC seems remarkably low for this much concern. Are you seeing a CLL expert? When your counts are as low as 10k, it doesn’t take much to bump them up to 20k. (Fighting something off, a bad day for a lab worker, etc.) At these low levels, it does seem like unusual treatment to be getting CBC every two weeks. Oncologists and Hematologists who are not CLL experts tend to early treatment, from what I have heard. A CLL expert would ask you “How do you feel”? Do you have B symptoms? What’s happening with your Hgb and platelets? WBC / ALC are only a very small part of the CLL picture. I have an ALC > 200k and the experts tell me I’m not ready for treatment yet.
And, most of the experts will tell you that the indicators are statistically interesting but don’t really talk about you in particular. You may be at either end of the statistical curve, and tomorrow they may uncover a new indicator that is even more relevant.
Best of luck and get as many CLL experts on your team as possible. You will see that many people who have had CLL for several years will have met with at least one, if not more, CLL experts. I’m part of the NIH Natural History of CLL in Untreated Patients Study and so get seen be several experts every six months. In addition, I have had a recent clinical review with Dr. Stephen Coutre at Stanford and am participating in a three month study of Lipitor and CLL at Stanford with Dr. Alice Fan, another research doc who will help me understand my disease. So build your team, but make sure it includes recognized CLL experts.
Chaya,
I wish I could be there but not this time.
Rita
Thank you all – for your thoughtful & helpful comments!
bbgal55 –
Yes, FISH, Flow Cytometry, etc. markers can change especially if the CLL is becoming more aggressive. Chaya has numerous articles about prognostic indicators (go to CLL Topics archives and you’ll find them).
LynnS –
* my lymphocytes were about 11k for about a year so when they suddenly jumped to 20k it caused some concern. So we re-checked my FISH & Flow Cytometry to see if any markers had changed indicating the CLL was becoming more aggressive. None of the markers had changed.
* my bi-weekly CBC is being done by my primary care doc (not my local oncologist). I’ve been her patient for 25 years so she is very diligent about my care. She wants to see WBC/lymphocytes stabalize or come down.
* I have a local oncologist and I’m also being monitored by Dr. Castro @ UCSD (which is part of the national CLL Research Consortium). I agree with your excellent point that it’s advisable to be monitored by a doctor that’s a CLL expert. I’m fortunate my local oncologist was willing to work with my UCSD doctor in my ongoing care.
* Thank you for the info about your care @ Stanford.
I must also point out that Chaya’s 2 CLL web sites are invaluable resources. When diagnosed Oct. 2009 I spent many weeks studying the material Chaya has on CLLtopics.org (Learning Tools, CLL Primer, etc.) to learn the CLL basics. After learning the basics one can stay current with all the CLL updates/resources Chaya provides. Due to this CLL knowledge I’m able to discuss my CLL with my doctors in a way that they understand and respect.
Thank you again Chaya for providing so much helpful and critical information about CLL. You are a blessing to all of us with CLL.
Patti Kruse
Thanks Patti…we are seeing the oncologist next week, but so far, his labs today still show a remission, thank goodness. I’ll ask about the markers, but I suspect she won’t want to re-check right now.
Our daughter is going to be able to go to attend the workshop, since she lives in the area and is a nurse, and her dad has CLL! She’s excited to go. Wish I could be there too.
Thanks again for all the great info from everyone. This site is the best!
Debra Anderson
Just re-read my last post and wanted to stress that when I said build a team of CLL experts, I put Chaya at the top of my team. Her CLL sleuthing and subsequent articles have made all the difference in my world.
I am so proud of you guys. This is thoughtful and helpful discussion. This is a classy CLL site or what!
I think the point that we all need to get under out belt is that CLL comes in many flavors. As several of you pointed out, learning the specifics of your particular disease is the name of the game. Having access to CLL experts who have seen more than just a few CLL cases is important. You do not want to be treated by a local guy that treats by the numbers, especially if you have one of the more unusual presentations. Just today I was working with a patient that had garden variety trisomy 12, according to the local guy. Something about the progression of her disease made me uneasy and I recommended she get a second opinion at a CLL expert center.
Sure enough, she has a rare but usually considered very aggressive t(14;19) translocation – something that was not recognized in the local work-up. That changes the lay of the land, both in terms of short term frontline therapy decision as well as long term game plan.
LynnS has it right. Get your team together. Both local physician(s) willing to work with an informed patient as well as CLL expert(s) willing to work with you and your local team. Sometimes it takes a bit of negotiating to get everyone happy with the arrangements. But it can be done and you come out ahead when you have more than one opinion to consider.
The most important thing to remember is this. You are the boss. It is your life, your CLL, your decisions are the ones that matter. Don’t let anyone bully you about that fundamental truth. Not even pushy patient advocates like yours truly!
Chaya, while you may not want to record the session using video, you could broadcast it securely through webex or many other collaboration sites. It won’t be recorded and the link to the site can be password protected for people who register in advance. Something to consider in the future.
Prognostic indicators are great – for some. I had ALL the good ones. However, I have had a turn for the worse. My WBC came down to within range but my RBC’s fell to 2.9,HGB to9.6, HCT to 29 and platlets at 32 before I landed in the hospital bleeding internally with blood clots. Had the whole nine yards done by a gastro dr. No signs of colon cancer or anything else. Which leaves me wondering if this has turned into something else. My Onc. just says that he can tell from my counts that my bone marrow has just been impacted more. Doesn’t want to treat me yet because I don’t have night sweats, etc.
Hopefully I will be seeing an expert in April for a consultation only if my ins. gives the O.K.
I would love to hear what they say at this workshop about this kind of situation.
Love to read all the updates. I don’t know how you do it. Chaya, you mention that some people e-mail you – is there a place on your site that one can do that?
Ooooops I just found it.
Hello Chaya,
Thank you so much for this valuable service. I was diagnosed on November, 2007 with CLL. At that time my white count was 12,000 and now, as of yesterday, it is 144,000. My doctor At MD Anderson recommends that I go on the Cal 101- Retuxan trial. Do you have any info or opinions on this combination of drugs?
GJ
Workshop Warm-up….Posted Last Week
I keep reading that prognostic factors are not useful except in very
selective circumstances.
Why, then, is so much research time, effort & money spent on developing and studying them?
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As it turns out, I just gave a talk today on this subject.
Some patients and physicians like to know what the future might hold. I believe that the prognostic markers are only good for telling patients what curve they will be on, not where on the curve they will be, and are therefore not helpful. Ultimately, these prognostic markers teach us a great deal regarding the biology of CLL and may help identify better treatments.
For example, one group has shown that the chemokine CLL3 has a strong prognostic role in CLL. As it turns out, CCL3 signals through the JAK2 kinase. We will be shortly taking an inhibitor of the JAK2 kinase into the clinic. This will provide some rationale for its use in CLL.
The one area where prognostic markers are helpful for clinical decision making is with deletion 17p and deletion 11q and guiding choice of therapy,
Rick Furman, MD
So sorry that I will be doing my 6 month visit at NIH the week before this valuable workshop. Look forward to seeing the slides and comments afterward.
All the best,
Lynn
Chaya – you just ROCK! Not only do I so appreciate your care, concern, knowledge, and williness to continue to be such a CLL advocate. But, I also love your sense of humor and gusto.
Thanks a million!
Karen Heston
There are frequent references on this site to local oncs who are simply behind the times, or worse, incompetant.
How does one know what flavor our local onc is? Are all who are not part of the 3 or 4 frquently mentioned expert centers in that category, or are there reasonable competent oncs at some local franchised cancer centers?
Started RCVP March 17, not having fun.
Elek
Elek:
It is not my intention to paint all “local oncs” with the brush of incompetence. Far from it, many local oncologists are hard working and responsible folks who make the extra effort to stay on top of their game. These are the ones that attend professional conferences, take CME (continuing medical exams), spend their evenings reading journal articles after a long day at work. They are the main medical providers of the vast majority of our patients and our healthcare would grind to a halt without their devotion and service.
But in every pile of people there are those that fall into the bottom 25% or lower. The word “oncologist” describes some one who treats cancer patients. ALL kinds of cancer patients. The statistics do not favor our guys. There are vastly more “solid” cancer folks out there, people with breast cancer, prostate cancer, lung cancer etc. Even among blood cancers, there are many more NHL (non-Hodgkin’s lymphoma) folks than CLL patients. So, chances are good that majority of local oncologists with a widely diverse group of patients see very few CLL patients in their practice.
My concern is this: how up to speed on the latest understanding of CLL, what makes it tick, how best to treat it, what can go wrong by way of infections and adverse effects etc will be a local oncologist who has seen only a handful of CLL patients in his entire professional life? How flexible is he in learning new things in a rapidly changing paradigm?
If you have a local oncologist who goes the extra distance, or one who happens to have a special interest in blood cancers, immunology etc, or just happened to have seen a lot of CLL patients in his practice, you are in luck. Also, many local oncologists are more than willing and happy to confer / consult with their CLL expert colleagues on difficult situations. That is sort of the best of both worlds, having access to expert opinion to guide decisions, as well as the convenience of local delivery of healthcare.
How do you know whether your particular guy is good, bad or indifferent? There is no sure fire way of telling; a lot depends on you as well, what you are looking for. Do you need a lot of hand-holding? Are you looking to out-source this whole CLL business and let someone else worry about it? Are you very hands-on and able and willing to keep tract of “best practices” as they come down the turnpike? Conversely, are you still in denial and would prefer a physician that does not scare the living daylights out of you by going into all the scary possibilities? Oncologists are often forced to practice psychology without the benefit of having been trained to do so. Just something to bear in mind – your personal comfort and working relationship with your oncologist makes a huge difference.
A few simple questions may be worth considering: ask your local oncologist how many CLL patients he has treated. Does he participate in community based clinical trials for CLL? Would have a problem if you went to get a second opinion to a CLL expert center? Would he be willing to work with the CLL expert down the road when you get into therapy? Last but not least, how does he feel about informed patients wanting to participate in their own healthcare?
Sorry this turned out to be a long response. But I thought it was important to correct the impression I seemed to have left, namely I think poorly of ALL local oncologists. FAR FROM THE TRUTH, and I apologize for not being more careful. It is not at all what I was trying to convey.
Chaya –
I have been part of the CLL Topics community since Oct. 2009 and I have nothing but the HIGHEST praise for the outstanding servive you provide for the CLL community. CLL Topics provides a wealth of valuable information and your added comments are always helpful.
I’ve never gotten the impression that you thought poorly of all local oncologists. All your comments (and most community postings) have been very similar to what you have outlined above.
It’s vital that CLL patients are armed with all the information possible especially since CLL is a rare form of cancer. My local doctors are welcome all the CLL info I’m able to pass onto them.
Thank you Chaya for all that you do for the CLL community.
Patti Kruse
Chaya-
Thank you for taking the time to address my concerns; I will ask more probing questions but I think my hemotologist/oncologist treats CLL patients in numbers. For side effects I am finding the team of nurses in the infusion lab know a lot from direct observation and offer a lot more than the printed caution sheets from the drug companies.
Ultimately the results will tell the story.
Elek
PS There was zero intent in my message to critizize you or the web site; I rely on both for much of my CLL education.
Chaya:
Looking forward to a lively session this weekend. Wonder if you will be commenting on IGVH status, mixed indicators and how it all fits in to this definition of prognosis:Predicting the likely outcome of a disease? Especially such a variable disease like CLL.
Here is a posting from Dr. Hamlin’s blog on Friday (April Fools Day), reminiscent of his posting on CLL Topics last year.
Prognostic markers again.
A new paper from Montserrat’s group on prognostic markers in stage A CLL suggests that the most useful indicators of a short progression-free survival are a total white count of greater than 30k and unmutated IGHV genes. The problem with the FISH abnormalities del 17p and del 11q is that they are so rare in stage A cases that they really do not really make an impact, whereas unmutated IGHV genes occur in 36% of cases. In multivariate analysis CD38 and ZAP-70 were squeezed out. Perhaps after 12 years people will begin to realize that V gene mutations ought to be done in every case.
posted by Terry Hamblin
Unfortunatly work and scheduling prohibits my attendance. Will a video or transcript of the work shop be available on line? Please forgive my FNG ignorance … I am relatively newly diagnosed and well ….. sigh…
Please send PowerPoint presentation when it is ready. Looking forward to the information.
Bah:
It will be up on the website no later than tomorrow morning. Promise.
As good as the PowerPoint is…nothing compares to Chaya live!
Thanks for a lively presentation and discussion on Saturday; it was hard to walk away not learning something!
Great stuff! I was diagnosed earlier this year… I know what I will be doing this weekend – reading the text and slides very, very closely!!
I am one of the ones who appears to have mixed markers – WBC 21K, Trisomy 12, one CD38 test showing 48% and another CD38 showing 8% (!!), ZAP-70 showing 41%, LDH high (250 or so, while high end of range of the lab is 220), B2M OK (right at the high end of the lab – 1.8, but from what I read elsewhere B2M needs to be much higher for worry), hypoglobulinemia (IGM very low, and IGG and IGA just above the low end of the range), but the gold standard test – IGVH mutation – showing almost 10% mutation… We are going to rerun everything at Stanford this summer…
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