Expertise and Survival
That is the (short) title of a very recent article published in the journal “Cancer” by the CLL experts at Mayo Clinic, Rochester (MN). Since CLL is usually a long drawn out process and the disease comes in so many flavors, there is very little doubt in my mind that expertise and knowledge of latest information matters. Below is the abstract of the Mayo article. Many of you will recognize the names of the authors, since they are your own physicians. If you wish to read the full text of the article, send me a personal email and I will help you locate it.
Expertise and Survival: Lessons from Chronic Lymphocytic Leukemia (CLL)/Small Lymphocytic Lymphoma (SLL)
Tait D. Shanafelt, MD; Neil E. Kay, MD; Kari G. Rabe, MS; David J. Inwards, MD; Clive S. Zent, MD; Jose F. Leis, MD; Susan M. Schwager, Carrie A. Thompson, MD; Deborah A. Bowen, FNP; Thomas E. Witzig, MD; Susan L. Slager, PhD; and Timothy G. Call, MD
BACKGROUND: The impact of physicians’ disease-specific expertise on patient outcome is unknown. Although previous studies suggest a survival advantage for cancer patients cared for at high-volume centers, these observations may simply reflect referral bias or better access to advanced technologies, clinical trials, and multidisciplinary support at large centers.
METHODS: We evaluated time to first treatment (TTFT) and overall survival (OS) of patients with newly diagnosed chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL) at a single academic center based on whether they were cared for by a hematologist/oncologist who subspecializes in CLL (CLL hematologist) or a hematologist/oncologist with expertise in other areas (non-CLL hematologist).
RESULTS: Among 1309 newly diagnosed patients with CLL cared for between 1999 and 2009, 773(59%) were cared for by CLL hematologists and 536 were cared for by non-CLL hematologists. Among early-stage patients (Rai 0-I), median TTFT (9.2 vs 6.1 years; P < .001) and OS (10.5 years vs 8.8 years; P < .001) were longer for patients cared for by CLL hematologists. For all patients, OS was superior for patients cared for by CLL hematologists (10.5 years vs 8.4 years; P ¼ .001). Physician’s disease-specific expertise remained an independent predictor of OS after adjusting for age, sex, stage, and lymphocyte count at diagnosis. Patients seen by a CLL hematologist were also more likely to participate in clinical trials (48% vs 16%; P < .001).
CONCLUSIONS: Physician disease-specific expertise appears to influence outcome in patients with CLL. To the greatest extent possible, patients should be cared for by a hematologist/oncologist expert in the care of their specific malignancy. When not possible, practice guidelines developed by disease-specific experts should be followed. Cancer 2011 American Cancer Society.
This study has the strength of large numbers, looking retrospectively at how 1309 newly diagnosed patients fared over their CLL career. This was the number of patients seen at the Mayo Clinic for a whole decade (1999 – 2009). That also points out the biggest weakness of the study – it is the experience of a single center, namely the Mayo Clinic. Would we get similar results if the study had included other CLL centers such as M. D. Anderson, Ohio State University Hospital and UCSD?
The authors paint a compelling scenario:
- The last decade has seen a tremendous level of improvement in our understanding of CLL as well as how to treat it. Among the highlights are (1) better prognosis using biologic markers, (2) new drugs such as Rituxan, ofatumumab, Campath, bendmustine, Revlimid (3) more effective combination of drugs, such as FCR, PCR, FCR Lite, FCO and so on (4) better understanding of the role of mini allo transplants (5) better handle on autoimmune disease complications such as AIHA, ITP (6) role of decreased immunoglobulin levels and infectious complications.
- Watch & Wait is still useful, and we have better guidelines on when to start therapy. For example, it does not make sense to start therapy just because the white count is high, if there are no “B-symptoms”
- Not everyone can handle the most aggressive therapy option available. Age, comorbidities, prior therapies and prognostic risk category of the patient all play a role in making therapy decisions.
- Recent large scale studies based on lymphoma patients have shown that whether patients receive their care in rural or metropolitan areas, community oncologists or university based hospitals makes a difference to overall survival.
- Despite these trends, insurance companies try to control costs by driving patients to the lowest cost provider, rather than the most expert provider. Really? They do that? Who knew.
But it can be argued that University based physicians have access to more modern technologies, new clinical trials and hot off the shelves new drugs. Is this the reason why patients seen at University hospitals do better than those seen by community oncologists, just a matter of better equipment and access?
To answer this question, the researchers came up with an ingenious approach. All 1309 of the patients in this study were seen at the same institution, namely the Mayo Clinic. But 59% of them were seen by Mayo hematologists who specialized in CLL, while the rest (41%) were seen by Mayo hematologists who did not specialize in CLL.
In other words, all the patients had the same level of care, all had access to Mayo’s formidable resources, clinical trials etc, all were seen by hematologists (oncologists who take care of blood cancers). The difference between the two groups is that little more than half of them got to see CLL expert hematologists, while the others saw garden variety hematologists that did not have the single minded focus on CLL. I am sure you will agree this is a nice approach, since it focuses only on the CLL specific expertise of the physician.
To cut to the chase, here are the details that emerged from the study:
- Patients treated by CLL expert hematologists were much more likely to have detailed workup of prognostic indicators – you know, all the new fangled stuff such as FISH, IgVH gene mutation status, CD38 and ZAP70. Patients seen to have more aggressive disease were more likely to get the full prognostic testing.
- Median time to first therapy (i.e., end of Watch & Wait) was 9.2 years for patients treated by CLL expert hematologists, compared to 6.1 years for those cared for by non-CLL expert hematologists
- Overall survival of patients treated by CLL expert hematologists was 10.5 years compared with 8.8 years for the other group.
- Both the time to treatment and overall survival differences between the two groups were statistically significant.
- Patients seen by CLL expert hematologists were more likely to participate in clinical trials (48% versus 16%)
- Patients seen by CLL expert hematologists were more likely to be treated by purine analog (fludarabine, pentostatin) based therapies (70% versus 28%). Non-CLL expert hematologists were more likely to use alkylating agents (cyclophosphamide, chlorambucil), or Rituxan based therapy with or without steroids.
All of this sounds quite reasonable. I guess I was surprised by the level of the difference between the two groups. Even when all the patients were seen at a major center such as the Mayo Clinic, the level of CLL specific expertise of the physician taking care of them made a difference. The two charts below are from the paper and they help drive the point home. Physician’s level of CLL specific expertise delays the start of therapy and increases overall survival.
The red lines in the charts above are my contribution, to highlight the median (50%) values for time to treatment and overall survival. The median overall survival had not yet been reached at the ten year mark for patients seen by CLL expert hematologists. The paper lists it at 10.5 years. That is a nice improvement over survival statistics I used to see earlier on.
When to start therapy, and what to use as frontline therapy are two of the most important decisions you and your doctors are likely to make. All too often, I hear from patients whose local oncologists made the decision to start therapy based solely on elevated white blood count. It is now pretty much the expert consensus that you do not start therapy just because the white blood count is high. The NCI Working Group Guidelines clearly spell out the conditions that must be met before therapy should be initiated. If you are not familiar with these guidelines, I suggest you remedy that right away. This is an important document and you will most likely need to refer to it frequently.
What constitutes “massive / progressive lymphadenopathy” – since this is one of the criteria for start of therapy? How about a couple of ugly looking nodes right under the chin where they are most noticeable? Patients freak out when they can see the swollen nodes every time they look in the mirror. But they may not be of compelling diagnostic value. A trained CLL expert who has seen thousands of patients is more likely not to freak out himself.
W&W is tough on patients. It is tough on physicians too. Experience and expertise are what are needed, not knee jerk response to elevated white blood counts and minimally swollen nodes. Each and every one of the therapy options we have right now has its share of toxicity. Rushing into therapy does not make sense, not until we get therapy options that tilt the balance in our favor, reduce the toxicity risk while improving the remission rewards.
Editorial
This is an interesting study and I recommend the full text of the paper – it has a lot more details than I have discussed here.
Are there limitations to this study? You bet. First, this was a single center study. Second, it was a retrospective study, looking backwards at patients treated in the past. Third, the study was conducted by CLL specific expert hematologists. Is there a chance of researcher bias? May be.
Broadening the discussion to the real world, does it help to be seen by CLL expert hematologists, as opposed to the other end of the spectrum, what I call the local strip mall oncologist? I think the answer is clear, not just because of this study but because it makes common sense that you would want the best informed and most experienced guy looking after you. That is particularly true in our present situation, where things are changing awfully fast. But getting to an expert center may not always be possible, for a variety of reasons. Travel and time restrictions, cost, insurance issues etc come to mind.
If none of these restrictions are there, if you have the luxury of being seen by whoever you want, is it a slam dunk choice to outsource all of your CLL worries to your CLL expert hematologist? Since this is the editorial section and I get to speak my two cents, I think you would be foolish to abdicate all your oversight and responsibility. It is still your body, your life. The sharp pointy needle hurts you a lot more than it hurts the nurse wielding it or the physician who wrote the script for it. Or the patient advocate who gushed about the cool science.
Everyone has agendas. A while back I wrote about a friend of mine who went to five different expert centers for full workup of his newly minted CLL. Each center did a great job of doing all the blood work and reading the prognostic tea leaves. Each center came up with an entirely different therapy suggestion for what ailed him. In each case, the recommendation was a clinical trial that the center was conducting at that time and were actively recruiting patients for it. Human nature is what it is.
There is a built in conflict of interest between the two roles that CLL experts play. On the one hand, they are dedicated researchers anxious to hasten the recruitment process for their pet projects. Expert reputations are built on successful clinical trials and rapid recruitment is one of the advantages of working at a large institution that has a steady inflow of fresh patients. On the other hand, they are physicians sworn to do what is right for the single, individual patient in front of them. Finessing this conflict of interest is not always easy. When your expert looks at you, which hat is he wearing? The researcher hat or the physician’s hat? Can you tell the difference?
Some centers are more aggressive than others in their recruitment practices. Recently, one of our leading expert centers told a patient they were recruiting for Rituxan + CAL-101 trial that his participation in the trial would not change his chemo naive status. I beg to disagree. They also told him that participation in this trial would not in anyway impact his chances with something like FCR down the road. I hope so, but no one has done this research and we have no way of knowing whether or not FCR would work equally well down the road, after a possible CAL-101 relapse. This is a case of trial recruitment getting ahead of clear and honest discussion of the risks / rewards. A recent review of a clinical trial using CFAR regimen in relapsed / refractory patients underlines what can happen, when clinical research gets ahead of patient care – in my opinion.
Everyone has agendas, and everyone has egos. The bigger the expert, chances are the bigger the ego. Do you have what it takes to listen to the expert and nevertheless make decisions that are right for you, even if they do not match what he is suggesting? Some experts do not take kindly to patients who do not automatically say “how high?” when they say “Jump”. Local oncologist from round the corner from your home or office may be easier to deal with, especially if you are the type that does not do well in confrontational situations.
Bottom line, as with all things having to do with CLL, no one is more in charge than you, the patient. No one has more skin in the game. By all means, expertise is valuable and important. But only you live within your body. Only you know what is right for you. The only way I see that you can do a better job of making good therapy decisions for yourself is to come up the learning curve yourself. Be well informed. Be well prepared. Use your resources wisely, use tact and charm in your dealings with the medical establishment. Listen carefully to what your doctors have to say, ask questions and make sure you understand the answers. Be good to your friendly and ever so charming and humble patient advocate ( grin), you never know when you may need information in a hurry. Don’t burn bridges that you may need later. But above all, be very sure you remember, you get to have the final say.
30 comments on "Does Your Doctor’s Expertise Matter?"
What stood out to me was the longer watch and wait equalled longer survival. The experts waited longer. This is frightening to me that I would not be getting the right advice. Also what you wrote before. 5 centers all different advice. Whom do we trust? What is the hidden agenda? It is mind boggling. Getting conflicting opinions is hard on the patient. thank you for always trying to SORT it out. Marilyn
I believe this is true, based on experience. The local oncologist wanted to start chemo about 5 years ago, “because my husband was young, healthy and could tolerate chemo”. We sought a second opinion with an “expert”, and we are still waiting and watching. We do have to listen to two physicians who do not agree on a number of issues, but we work at educating ourselves about this disease. We are making our own decisions with the input from both physicians. CLL Topics has been very important in our education, and I’m sure we would be in a different circumstance without the knowledge gained from this site.
We have to pay for the “Expert” office visits because we have an HMO, we are blessed that we are able to do this. We have not been asked to participate in any research, probably because we are a private pay.There are some identifiable weaknesses in the research, but I feel there is a great deal of truth in this article.
All I know is that our first local general oncologist recommended Watch and Wait. Tom had been very sick for 6 months with infection after infection and his neck size grew from a 15 1/2 to a 17 1/2 in the same 6 months. We sought a second opinion at MD Anderson with Dr. Keating. Tom was immediately put on FCR and we, shell shocked, just went along with him. Looking back at his CBC and marrow involvement, I now am understanding of Tom’s rushed treatment. He was in bad shape.
After relapsing from FCR, Tom saw our original oncologist in Austin and asked him what he should be thinking about for the next treatment. The local guy said that he didn’t know what could be done after failing FCR. He said he was sorry, but he wasn’t sure there was a treatment that would work for Tom. MD Anderson couldn’t believe his response and Tom has been on several trials since that time. I really do believe that Tom would be dead had he only relied on a local, general oncologist.
Jenny Lou
I am a patient at Mayo and see one of the CLL experts who co-authored the study. What puzzles me is why anyone diagnosed with CLL and choosing to treat at Mayo would see any hematologist other than one of the CLL experts.
Good question Jim. The only reasons I can think of are that the CLL experts are heavily booked and may not have been available immediately. Or the patient had personal contact with or referral to the non-CLL expert hematologist.
But you are right, I cannot imagine anyone going to the trouble of visiting Mayo (especially winter time in MN!) and settle for anyone other than one of the CLL experts.
I feel extremely blessed! I have a local oncologist that trained at M D Anderson and maintains his contacts there. He does not specialize in CLL. From the very beginning, if he had any questions about my situation, HE called his contacts and consulted with them on my behalf. His quick actions in the beginning saved my life as I was in a very bad way. My doctor has always discussed options with me and he has even gone so far as to check to see if there were any clinical trials that I might qualify for.
However, should I be unfortunate enough to lose my wonderful doctor, I will go directly to M D Anderson. It only makes sense to do so. I have made it this far and I am no where near ready to quit now!
Again Chaya, thank you for a well thought out and written article!
We are lucky that Watch & Wait is still the game plan for us. But I know we need to stay current with the flood of new information. When, and if, we need to take action, we don’t want to be swimming in unfamiliar open water! I’m grateful to have you Chaya, and an experienced “pro” at Dana Farber. I wonder when our doctor there will retire and who will take over the helm. Already there has been a changing of the guard in our hometown. We have passed the initial phase of apprehension with our new oncologist. Its amazing that doctors specializing in any field that has a mortality component would enter into a new position with new patients…and be even slightly oblivious to the fact that they need to EARN trust from the patients they inherit. All relationships are 2-way streets. We like our local doctor, but when push comes to shove we will be going to the expert. No time to play games here!
I think it is a great point that you will see different results for all the different big centers. What would the rankings be? I can only make a guess, but I would be willing to bet Mayo would be in the top 3 and Kanti Rai would be in the top 2, if not 1. The ones who buy stocks in the new drugs they are pushing or treat patients like cattle for their clinical trials will be at the bottom. I know clinicians at all the major center and most have great respect for their patients and duties. I also know some great clinicians from Italy, Germany and England. If the local oncologist takes a minimal amount of time to keep abreast of the worldwide fight against CLL, they should be able to provide a standard of care on par with the top centers. I completely agree with the comments about gaining patient trust. Doctors who treat patients like statistics will not have the same results as those who show they care and inspire people to fight. Fighting any tumor is not easy and a positive attitude is a big weapon.
You mention:
Patients seen by CLL expert hematologists were more likely to be treated by purine analog (fludarabine, pentostatin) based therapies (70% versus 28%). Non-CLL expert hematologists were more likely to use alkylating agents (cyclophosphamide, chlorambucil), or Rituxan based therapy with or without steroids.
The Sloan Kettering’s expert who started me on the alkylating agents said that a non-CLL hemotologist at Hackensack Hospital who wanted to start me on the fludarabine & etc chemo was “either ignorant or greedy”. They waited another 2 years before doing so. I think either this paragraph is wrong or that each type of CLL has to be treated differently.
I can not imagine any one diagnosed with CLL or any other type of leukaemia or cancer and not investigating to see an expert in that field, no matter where the specialist is I would always go for a second opinion and maybe the expert can work with the local one and follow recommendations.
I am just 8 years since I was diagnosed I think I have had a good quality of life and be here due to consulting with top CLL experts and working as a team with my local carers.
I do not think I would have been fit for a SCT back in 2008 if I had followed the route of the first hematologist I saw,also there is no harm to see more than one CLL expert and then make one own’s mind about what is best for us.
monag764
The facts regarding use of fludarabine based therapies is correctly reported in my review.
I think local oncologists do tend to use alkylating agents – especially chlorambucil – since this drug has been around for a long time and every oncologist knows about it. Fludarabine and pentostatin are relative new comers. Even more recent are chemoimmunotherapy combinations such as FCR, PCR and FR. These are very often the choice of therapy at expert centers, while the local guys may recommend single agent F, single agent C or a combination of the two. Recent well conducted large scale studies have confirmed significant superiority of chemoimmunotherapy (including purine analogs) over single agent chemotherapy options – including alkylating agents.
Azzy:
I agree with your comments – especially about Mayo and Kanti-Rai being in the top three.
I am sure some of you wonder why I keep nagging about researchers not thanking patients who volunteer for their clinical trials. It is a matter of respect. If the physician / researcher can see the patient in front of him as a whole human being, someone deserving of respect, perhaps there will be less of treating him or her as “cattle”. I am not sanguine about this. It will take a long time before we are treated as equal partners and welcomed to a seat at the table.
Several years ago at a Mayo conference, I raised this issue of thanking patient volunteers in journal articles. Each of the Mayo experts was there. You should have seen the shock and affront I caused. And these are the good guys! I sincerely think Mayo is one of the best CLL expert centers. Heaven knows I send hundreds of patients there when asked for a referral. But they too felt it was “outlandish” suggestion that patients should be thanked for their trust, for their participation.
A few practical suggestions by a physician (not a hematologist) in a large university hospital:
– some hospitals (Mayo for example) offer official consultations by Email for a fee. I do not know if this exists for CLL, but you can at least ask. And ask if you can follow-up the Email reply with a phone call.
– from the start, tell the CLL expert that :
1- tell the CLL expert that you are NOT interested in participating in a research protocol. You can always change your mind 20 minutes later, but at least you will get an honest opinion which is not bias by the fact that the CLL expert is under pressure (including time constraints) to recruit patients for a study. And trust me, I work with them on a day to day basis, and they can be under tremendous pressure to recruit and get the study completed.
2- tell the CLL expert that you understand that in CLL therapeutic decisions are not cut and dry, that YOU will make a decision and that YOU assume complete responsibility for your decisions. A problem in dealing with oncologists is that despite appearances, they are often very anxious at the thought of being criticized (I am not referring to medico-legal concerns) by the patient at a later date for “not having done enough”. This is the biggest problem you will have in getting the best advice in oncology.
– when you ask the CLL expert what you should do,don’t ask what YOU should do; ask what HE/SHE (the doctor) would do in your place. It takes pressure off the oncologist.
– a CLL expert hematologist is not a CLL all around expert: CLL patients usually become “sick “because of infectious complications, for example the flu, shingles, sinusitis and pneumonia. Infectious diseases is a medical specialty in it’s own right. Don’t be fooled: oncologists have a very superficial knowledge and understanding of infectious diseases (family doctors are even worse). In my opinion, all CLL patients should see an infectious disease specialist at least once for initial recommendations, and someone to turn to if there are infectious complications in the future. Early vs late treatment of infectious diseases makes the difference between a minor annoyance treated at home, and hospitalization (or an emergency room visit) . Do you know how to differentiate a common cold from the flu, sinusitis or pneumonia? Do you know the early symptoms and signs of shingles ? Do you have the right antibiotics and antivirals (such as valaciclovir for shingles and tamiflu for influenza) ON HAND at home ready to start at the first of infection? Do you have masks at home in case a visitor has a cold or the flu? The infectious disease specialist will teach you all that and also make sure you get all vaccinations as early as possible in the course of CLL, although they are much less effective than in people with a healthy immune system.
Lucius:
BRAVO!! Excellent advice, you covered many points I did not. I especially appreciated the comments about infectious diseases and the special care CLL patients need to take in that regard.
Great posting Chaya. My first comment to all CLL patients is to make sure you find a CLL specialist. Glad to see there is some validity to my belief. Self proclaimed world class cancer centers and strip mall oncologist (stole that term from someone) given the benefit of doubt- aren’t all just greedy-just unable to stay current. CLL Docs are. Still you need to verify and understand all the risks involved and that any decision has more of an impact upon your life-therefore you have yea or nay power over all treatments. Too many available resources to go blindly forward.
I personally have no challenges with my Dr making money as a shareholder in pharma stock- as long as it is disclosed properly. Rather have him/her focused on my treatment than how to make the Beemer payments.
Thanks again for this resource.
Bringing this back to basics, if you choose to go to a CLL specific clinician then you don’t loose. Whatever the retrospective trial shows-and it uses large numbers, which is a plus, even though it was a single centre trial, there is no way that the ‘CLL specific’ patients were at a disadvantage.
this might seems like a mealy mouthed double negative, but the bottom line is- you don’t loose.
Spin that as there is more than reasonable evidence that you will win…and yes, I am fully in favour of selecting a consultant with a ‘special interst in CLL’ in the UK.
Good call Chaya. Thanks.
The question of whether of not to be treated in a “CLL expert” center is not a matter of personal preferences or opinions. Every choice has it’s advantages and disadvantages. It is better to ask yourself “what should I be concerned about” if I am treated in a non CLL expert center vs a CLL expert center.
Chaya has made an excellent case for consulting a CLL expert, and I totally agree with her suggestions, but patients treated in centers with CLL expertise face other, different but serious problems which they should be aware of.
Meeting a CLL expert for a consultation is not the same as being treated in a CLL expert center. Hospitals with CLL expertise are all large university hospitals, which are run on A DAY TO DAY BASIS by … students, not ‘expert’ specialists. Students learn by making (many) mistakes …. at the expense of patients. Fellows and residents (ie medical specialists in training who are not even haematologists/oncologists yet, let alone CLL experts), student nurses, student pharmacists, who are responsible for quite a substantial numbers of errors due to their lack of experience (unbeknownst to the patient). I notice for example, that aberrant drug dosages (5 times the usual dose) are easily caught by someone with experience, but easily missed by novices. Senior (expert) staff is often busy with other matters, can’t be at 2 places at once, and supervision is limited.
This has practical implications: ask the CLL expert at the time of the initial consultation which dose of chemotherapy and medication he will prescribe and make sure to check (politely – you can joke about it and say that you are neurotic) with the nurse at the time the drug/chemo is administered. The same holds for a non CLL center for different reasons: they may not be used to routinely administering FCR for example and are therefore more liable to make mistakes in calculating doses. Learn to differentiate (name tags are an excellent clue!) junior from senior staff, and politely ask to speak to someone more senior when in doubt and facing a serious issue or undergoing a procedure. Only refer to the senior staff for serious issues, not to complain about the food or if the parking attendant was rude, to avoid losing your credibility.
Lucius,
Very good insights about infectious disease. From my experience, which is limited in the clinical setting, CLL experts have one favorite reaction to infection, Bactrim. There are anecdotal cases where this strong antibiotic has hit the underlying driver of this person’t CLL, and remission is seen. This makes it a tempting option when maybe the odds would be much better for the vast majority of people who might die from their infection and would not be helped by an antibiotic cure, because their disease is driven by something else.
Lucius,
Important lessons, well said
Two comments.
First, each CLL specialist, in truth each doc and each patient is different, and so you need to find how to work with best for you with your “team”. I try to play to the strengths of all the providers that care for me so I can get the most from them, and then make the final decision. As Chaya is fond of saying, no-one has more skin in the game than us patients.
Second, I would argue that most FPs are very good with infectious diseases, but not so good with immune-suppressed patients. We tend to be conservative with antibiotic therapy, a good thing on the general population, but more problematic if you have CLL
Be well. We are all in this together.
Brian
Chaya,
One thing we need to remember is that even among those who seek a cll expert, not all do so at the outset. What is not clear in this study is how close these patients were to initial diagnosis when they got there now what rai stage they may have been at. One of the Mayo experts told me that 10% of the patients who do come there with a CLL diagnosis do not have CLL. Perhaps those patients initially saw ‘other’ experts? or local doctors? we can’t tell.
The best reminder on this study is that you remind all of us that no one ‘expert’ may have the right answer for us. The buck stops with us. Sadly all too often we must fight, buck the system, and of course it doesn’t hurt to have the resources to go find an expert. I have never forgotten your story of the man who sought as many opinions as there were experts, only to find he was offered the treatment du jour of that center. the one piece you left out this time was that that man was very wealthy and even when money was no object and what he specifically asked for was the correct treatment for HIM.
As you know, I sought the help of no less than four experts on my trip. I didn’t ‘fit’ the picture of whatever it was they were looking for, and I didn’t have the strength to argue that waiting longer was a bad idea for me. By the time I finally did get back to Mayo, I was told I should have been there a year before. I did not seek the advice of any local oncologists.
The Mayo approach, from what I’ve seen does not include one or two factors, but rather any and all that could possibly come into play and the combination of all of those.
The Mayo study is based on ‘old’ (for CLL) data, and I suspect the picture will be different in years to come. We now have so much more available to us as patients than we did in the 90’s. We should use ALL of it.
As patients we owe it to ourselves not to be terribly swayed by one or two studies that claim to prove that a particular test is not quite accurate, or that ct scans are lethal and should be avoided at all costs, or that there is one algorithm that fits ALL patients. Perhaps the best approach, for those that are able is to get thee to an expert on day one. Find out which ‘bucket’ we most closely resemble, and then proceed accordingly. BUT, and here’s the BUT. We need to stay aware. I was told I had ‘gorgeous markers’ by one expert at dx. I didn’t quite believe that so I had it confirmed twice more. Shortly after that all sorts of things went bump in the night, but not the usual suspects. I fought to get a new FISH done, but no expert would do it. I had to go outside the system and get it done. Then armed with that, showing an 11q and a few other weird things, as well as ct scans showing progressive adenopathy, etc, I tried again. to no avail. three more turned me away, nearly laughing. Finally I went back to Mayo.
They encouraged me to have the treatment they recommended done by a local oncologist, with their guidance. I have done that. Not a perfect solution, but probably less exhausting. I do go back to Mayo however and will as much as possible. Ironically, even though I had just had FISH and a batch of other tests done at Mayo, two weeks later the local oncologist repeated the FISH, at a second ?? level lab. Their pathologist stated, “very agressive, unstable CLL, advise immediate treatment” Exactly what Mayo had advised.
Lucas makes some good points as well. 1. Even when we begin treatment, our eyes need to be wide open. Ask for a printed schedule of all drugs being used even every day you go to get the treatment. check doses, drugs, and then make sure they match the bags being hung. So not settle for, “it’s part of your treatment”….. you’d be surprised what gets thrown into the mix. 2. Medicines used as prophylaxis can have as bad an effect on a patient as the chemo itself. Pay close attention to ALL of those, and cross check them for side effects and contraindications, no matter who is treating and where.
One area where CLL experts do have an advantage is they may be more familiar with which side effects and even infectious events may plague us more than other cancer patients and how best to avoid and handle those.
But an interesting, as you say, retrospective study. thanks, beth
Chaya, very interesting study. My local oncologist, a non-CCL specialist, put me on W&W for three years, and when my white blood cell count topped 160 thousand, he thought it was time for treatment. I had no other CLL symptoms, and according to the Mayo study, I could have remained on W&W a bit longer. My oncologist wanted to treat me with chlorambucil, an alkylating agent, which I discovered had been around for a long time, and so I sought a CLL specialist using more advanced chemotherapy. Through a computer search I found Dr Keating at MD Anderson, a place I never heard of before. I set up an appointment with him for a second opinion, and low and behold, I was accepted into a clinical trial for FCR. After the first round, and Dr Keating coordinated with my local doctor for administration of the remaining cycles. So although a non-CCL oncologist, may not be happy with the type of treatment, (I felt that Johns Hopkins, my doctor’s alma mater, did not favor FCR at the time) he followed the FCR regimen and I did not have to travel to Houston for the remaining five cycles, which saved me a lot of time and money. Hurray for both CLL and non CLL oncologists.
Chaya, thank you for sharing this article and providing your helpful comments. I chose to make a copy of portions of when to start treatment as this was new information for me. I plan to do some serious thinking through whether I need to consider changing to a CLL oncologist/specialist verses the hematology/oncology specialist I currently see. One question I have yet to ask you is actually related to this very topic – in your years of experience and work in this field, what are the “top,” “best” or “most well-known” facilities for treating CLL patients? (Example MD Anderson seems to be a name I hear a lot of in this arena.)
How is your knee by the way?
Again, thank you for sharing this information and your thoughts. Look forward to your reply.
What’s unfortunate in many cases is that CLL patients at local oncology clinics don’t know the grass may be greener on the other side of the fence. Once the patient is diagnosed by their family doctor and sent to the local oncologist/hematologist for the initial work-up (and the oncologist/hematologist is often chosen by the family doctor by referral – it’s not by patient’s choosing), the patient usually sticks it out with the local clinic from w&w through treatment.
In my own experience, my local oncologist/hematologist has seen so few CLL patients over the years that he can barely spell CLL. When asked about prognostic indicators, he replied, “Don’t worry about them. We watch you and then when the time comes to treat you we treat you.” End of discussion. He’s a likable doctor. He’s always there with the compassionate bedside manner. Would I trust his judgment when it came to time for treatment/type of treatment? Not a farking chance. I’m just keeping the local bridge from being burned and an opportunity to get the routine blood work done so I can forward it to my doctor at one of the expert CLL centers.
Because of the age group (perhaps they lack internet skills to research or the ability to travel to an expert CLL center) usually associated with CLL I wonder how many patients unknowingly settle for much less than they should. Perhaps they believe that their local guy has all the knowledge and ability to treat their CLL. (I’m very sure that the compassionate bedside manner of my local oncologist/hematologist would make most older patients feel that they were getting very good treatment even if they were getting hit over the head with a rock.) Perhaps the elderly patients aren’t wanting to burden their families so they don’t share the details of the medical care — without the details the families can’t help the patient get the care that’s best for them. Or perhaps it’s a matter of being overwhelmed with choices so they let someone else decide and they just go along with whatever is pushed at them.
For me, it’s my skin. I know the vast limitations of my local guy. I know the grass is greener on the other side of the fence so I’ll be over there. But, of course, I’ll be keeping my eyes open since there might be greener pastures to come.
great article and great comments.
One small question: Internist vs Infectious Disease specialist. Should an Internist be almost as good as an Infectious Disease Specialist?
I have two wonderful internists .. each is very loved by all their patients, including me. (Long story on how I got two .. but I’m keeping both !! Luckily they are good friends.) Last May I got a very sore throat and my neck nodes clustered and bloomed. Did z-pak, then two weeks of cefuroxime (sp?) .. off for four days then back on for another two weeks when the throat returned. Since then, my neuts have been as high as 53K, now at 12k and my mono’s as well at the 9k range. My WBC is now around 300k so I’m not sure how seriously to take the neut and mono numbers, with such a high WBC. I feel fine .. nodes have subsided a bit but not those numbers which can indicate infection.
My Question: I’m wondering if now is the time to see an infectious disease specialist or whether I should just ignore the neuts and monos. My internists don’t seem concerned as I’ve also seen an ENT and he has blessed my throat and sinuses.
Thanks
Lynn
Lynn
Great article, Chaya!
It seems to me and to Jerry Marti who visited me on Saturday that the greatest influence a CLL expert can have is to know when not to treat. AS soon as treatment begins, infection, transformation, autoimmunity and MDS are all more likely. Since we don’t have a cure yet, treatment before the guidelines make it necessary is hazardous.
I take your point about experts favoring their own clinical trials, but these are seldom for first-line therapy, where the greatest difference occurs – the diffenence in time to first treatment is greater than the difference in overall survival. The truth is that when it comes round to clinical trials for late disease, we do not know which trial would be better. I’m not that keen on trials that preceed optimum first line chemo – certainly not with our present state of knowledge.
There are also experts in CLL who are not part of a current research program who are usually willing to give internet advice.
I would take issue with the separation between purine analog based treatments and chlorambucil. Dose means everything and in the USA almost everybody underdoses with chlorambucil. Data from the LRF4 trial demonstrate that in proper doses chlorambucil is as effective as fludarabine and less toxic. For certain patients – those who are elderly and have co-morbidities, chlorambucil might be the correct choice. Kanti Rai, an expert most people have heard of, still uses it in some patients. The chlorambucil/rituximab combination is a very effective one.
Chaya,
Thank you once again for presenting these findings in such a way as to help us understand our disease processes better. I went to Mayo after a local Onc diagnosed CLL and was very impressed with how my local Onc welcomed the help and suggestions of Mayo.
After participating in a clinical trial, which I was more than happy to do, I was W & W for 5 years. When it came time for Chemotherapy the Mayo clinic prescribed FCR and my local Onc suggested only R. Since it was my decision, I felt that the Mayo suggestion had the chance to give a better remission. My local Onc was happy to use FCR in their clinic according to Mayo guidelines and that saved me from having to go to Rochester to have my 6 months of Chemo.
Thank God for my local Onc who was very helpful in coordinating with Mayo in a way that was very seemless.
Thanks again Chaya for all you do!
Mark
What struck me about this study is what it says about Mayo. The physicians in Rochester are all called consultants and they are encouraged to consult with each other on cases. So does one read the difference in outcomes as a lack of consultation between the two groups, expert vs non-expert, or is something else going on independent of this? I did not see this addressed in the article.
I am wondering if these results will lead to a consensus within the expert group and subsequent publication of an updated ‘Best Practices’ but online, perhaps internal. Mayo’s multiple myeloma group has done this publically with a series of recommendations combined under the ‘mSMART’ acronym.
Terry Hamblin:
Thanks for the kind words Terry. It means a great deal to me.
For those of you who do not follow Terry’s blog, here is a link to his comments on the Mayo article, published just today.
http://mutated-unmuated.blogspot.com/2011/09/why-experts-do-better.html
I am proud to be on the same page as one of our most patient oriented CLL experts.
A most important discussion,
Perhaps like many patients, I live where access to CLL experts is difficult. My CLL education began on the Internet and especially with CLLTopics so when my CLL began behaving contrary to multiple markers indicating an indolent course progression, I decided to seek consultation from a CLL expert (Dr John Byrd). I remember him saying that he needed to repeat various tests I had gotten earlier because at his Clinic, patients who had been diagnosed with CLL from other Oncologists were sometimes found to be misdiagnosed. There are literally scores of different leukemias & lymphomas, many sharing similar markers and clinical symptoms. One example of potential misdiagnoses involves mistaking MCL (Mantle Cell Lymphoma) for CLL. Although there is a much less common indolent MCL the majority of MCL patients have an aggressive disease needing a different and more urgent treatment strategy. See: http://clltopics.org/PI/MCLWolf.htm for details. Some patients can share more than one “species” of leukemia/lymphoma supporting the idea that having a CLL expert on your team may lead to a longer and better QoL.
This is doubly true when treatment is considered. Even when a correct diagnosis of CLL is made, a general oncologist can misdiagnose a patient’s stage (been there – had that happen) and require unnecessary CT-scans. I asked the 4th oncologist, in as many months at my local clinic, what he recommended for my frontline treatment and his answer was CVP-R. I politely asked if he could provide a paper showing CVP-R as an appropriate TX for CLL and to his credit he owned up to his lack of knowledge about CLL. This doc claimed to be a friend of Dr. Kanti Rai and that is how I ended up with a consultation with Dr. Rai. Does this make the doc who misdiagnosed both my stage of disease and an inferior TX a bad doc? Not necessarily, because in that clinic there were folks with highly aggressive metastatic cancers compared to my CLL and given the number and variety of Leukemias & Lymphomas for which many of the same drugs will work but not cure, his sloppiness is, if not forgivable, understandable. CVP-R in my case would have “worked” to some degree but what about the patient with a 17p del., unmutated IgVH status with a rapidly progressing course of disease? The wrong TX protocol using a purine analog like Fludarabine could easily put a patient’s life in danger and be ineffective for the CLL. I have known one such unfortunate soul who was put on Fludarabine by an Older Onc who had not kept up with research. That patient died. A CLL expert would never have made that error.
Life being what it is to include the difficulties of obtaining access to a CLL expert, it is well to remember that CLL is the focus of a CLL expert and CLL patients come with a variety of co-morbidities. If a patient is lucky enough to be otherwise healthy when diagnosed, the chances of co-morbidites increases when treatment is needed, during TX and after TX. If my experience is that of other patients, the lack of attention to my efforts of alerting doctors to my developing kidney issues, it points toward a pervasive flaw shared among CLL experts and heme/onc generalists which is the focus on CLL to the exclusion of a need to address all medical issues in any given patient as a whole.
From attending two Blood Cancer Symposiums hosted by the Mayo Clinic I have come away with a feeling that the culture at the Mayo Clinic puts more emphasis on treating not just the primary disease, e.g. CLL, but the varied ancillary conditions that arise from having CLL.
One interesting and potential benefit for patient participation in experimental drug Clinical Trials is that it mandates attention on all side effects and overall health issues of the patient.
WWW – nearing 5yr anniversary of DX – currently in Clinical Trial for PCI-32765 monotherapy doing well.
PS – In honor of Labor Day I am sending a donation to Chaya and Radha who labor on our behalf. Let’s not make it necessary for Chaya to ask to keep this quality of CLL info coming.
Not sure who to turn to at this point. Husband and I both have CLL. After last CLL Expert visit, was told we would be put into a Clinical Trial after first of year.
In reading the pro’s and con’s of these trails. I am worried, very worried. I want to trust the experts…but we are both 71 yrs. Husband is a diabetic ( not in control) also heart issues, and now skin cancer.
I have issues with nodes being swollen,but written tests say at 1 and 2 cm. We both feel pretty good, get tired,sometimes moreso than others. Hubby has night sweats on occasion..
Now what to do? Go along with the trail? Seek another opinion such as Mayo?
Hubby is leaving the worry and decision making up to me…HELP ! ! !
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