One Shoe Does Not Fit All

ShoesThey say CLL is a “good cancer” because majority of patients have time to prepare, get used to the idea of having an incurable cancer through the “Watch & Wait” period.  Frankly, if you want my two cents, “W&W” should be re-labelled “Watch & Learn” or “Watch & Get Ready” or “Watch & Plan For the Future”.  A recent meeting with a very nice couple I met highlighted for me once again how very different this disease can be.  Not just in terms of disease presentation or prognostic indicators or long term outcome - but also in how people respond to the initial diagnosis as well as therapy responses.  Are there any “right” or “wrong” ways of handling a CLL diagnosis?  Not really.  It is your body, your life, your CLL.  You own it.  You are the boss, the only decisions that make a damn bit of difference are the ones you make.

Having said that, I thought it might be useful to examine the pros and cons of the various approaches I have seen over the years, as I worked with literally thousands of CLL patients - up close and personal.  I look forward to a lively discussion following this article.  After all, each of you are in the driver’s seat.  I am but a back-seat driver.  The closest I came to experience CLL firsthand was taking care of my husband.

Let us count the many ways patients out-source the worry of CLL.

Caregivers

First line of defense immediately after diagnosis is out-sourcing the worry to a devoted spouse or other family caregiver.  If you have someone close to you who is willing to step up to the plate, who is willing to worry about your health with no reservations, count yourself blessed.  On April 9th we have a workshop scheduled to discuss prognostic indicators.  But there are some prognostic indicators that are not discussed routinely in learned journals.  Among them, one of the most important is having stable and devoted family support.  Trust me, you are going to need the support.  There will be dark days in your CLL journey, days when you will need to lean on someone you trust with your life.  Literally.  Loving family support, along with adequate insurance coverage, makes a big difference in how things work out for our guys.

Where to draw the line? It is great to have a loving spouse or caregiver go with you to doctor’s appointments.  Two pairs of ears are much better than one.  It really helps to have someone on your side of the consultation table to ask questions, take notes, pay attention when your mind shuts down at the mention of the big “C”.  Spouses who have shepherded their loved ones through heavy duty therapy regimens or a transplant know it is no small thing that they have undertaken.

Right after my husband was diagnosed, for about 3 months or so, PC wanted to have nothing to do with CLL.  He left all the reading and learning to me, I made all the decisions - including the decision to get a second expert opinion.  I remember how stressed out I was.  It was hard enough dealing with the fact that my beloved husband had just been diagnosed with CLL.  Dealing with all the practical decisions on my own made it so much harder. Fortunately for me, PC soon recovered his trademark calm assurance and the the next eight years of his life with CLL was a true partnership. We spent some of our best years together, memories that I would not trade for anything.  CLL Topics would not have been born but for his active support and participation in the process.

So, exactly how much are you out-sourcing the “Work & Worry” to your significant other(s)?  Are you drowning them in responsibility?  Or, at the other end of the spectrum, are you such a control freak that you are shutting them out completely, giving them no say in the matter?  Speaking as a CLL spouse, I hope you will believe me when I say this disease is sometimes harder on the spouse than it is on the patient.  Remember, CLL is a “good cancer”, you may need to depend on your personal relationships for years, decades even.  You may want to think about burn-out, not just for yourself but your family too.

Physicians (Local Oncologists)

Medical teamThis would seem to be the right way of out-sourcing CLL worry, let your medical advisors take care of the decision making.  After all, that is why they are paid the big bucks, right?

A few decades ago, that is exactly what your fathers and mothers would have done.  CLL was a simple and straight forward business.  You started off in “W&W”, and if you were lucky, you stayed there for a good long time without ever needing therapy.  Nothing for the patient  to learn, since very little was known about this disease.  Early intervention did little to improve survival since we did not know much about which patients were likely to respond well and which would have nothing to show for all that therapy related toxicity. If therapy did become necessary on account of pesky “B-symptoms”, there was little angst about deciding which drug to use.  For a long time there was only good old chlorambucil; later on fludarabine and prednisone were added to the list of available drugs.  Length of remissions depended on patient prognostics (of which we were mercifully unaware in those days).  As one wag put it, “Life sucks, and then you die”.  How much “easier” can it get? No angst, no decisions to make, you just go for the ride.  Uggh!

How things have changed for today’s CLL patient! Should you do the classic W & W? Or are you better off getting treated with one of the new fangled kinder and gentler drugs to control the CLL, see if you can make it into a chronic disease similar to diabetes or high blood pressure?  If you are eligible, should you volunteer for an early phase clinical trial using a kinase inhibitor such as CAL-101?  When therapy time rolls around, should you bring out the big guns such as FCR, or should you try single agent Rituxan or ofatumumab?  How much green tea supplement should you take?  How about vitamin D3?  When is it a good time to use growth factors such as Neupogen, Procrit?  Should you ask your doctor about that odd looking tiny little “mole” your wife saw on your back last night?

This is but a short list of the questions patients have for their physicians.  I bet you can think of dozens more.  Problem is, while the disease has grown in complexity and matched by increasing list of questions we want our physicians to answer, the amount of time physicians have to spend with each individual patient has decreased.  Are you sure that in the 15 minutes you have for your consultation, he is going to be able to answer all your questions, evaluate your situation and see if anything has changed with reference to several years worth of your prior CLL history, write the scripts and make therapy recommendations?

Then there is the question of whether you should depend on local oncologists or make the extra effort to go to a CLL expert center.  (I am not even going to touch the subject of depending on your brother-in-law, the Ob-Gyn, as your primary medical safety net.  Oncology, hematology and immunology are very specialized.  Would you take your precious Porsche to be serviced by a guy that fixes refrigeration units for a living? In any case, there is a good reason why doctors are not supposed to treat their own family members)  Below is a comment I posted a few days ago, on the subject of local oncologists.

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. Local oncologists are by far the most important healthcare 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 track 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 psychiatry 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 he 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?

A long winded comment, but I thought the distinctions had to be made between adequate and less-than-adequate healthcare delivery at the local level.

How about expert centers?

MDACCIf you have gold plated healthcare insurance and can pick and choose where you get monitored / treated, can you safely outsource all of your CLL worries to your CLL expert?  Yes, to a certain degree.  You are very likely to get expert testing, quality lab work that you can depend on and an expert that is not likely to be flummoxed by less than typical disease presentation.  He is also likely to be aware of the many therapy choices available to patients today. So far so good.

But is there an implied conflict of interest in how expert centers do their jobs?  Experts get to be experts by doing cutting edge research, and we all need to be grateful that someone is doing the research - otherwise, where would be be in terms of new and improved therapy options down the road?  Is there a conflict of interest between the role of the researcher doing everything he can to speed up recruitment for his favorite clinical trials, and the devoted physician looking out for the best therapy options for the individual patient in front of him?

I submit to you that clinical researchers are human beings, like you and me. They are not monsters, nor do they wear shiny halos.  They put their pants on in the morning one leg at a time, just like you and me.  They have their pet peeves, their ambitions, their desire to do something worthwhile with their lives, be recognized for the work that they do.  In other words, a complex mix of altruism, selfishness, high minded desire to save lives and need for ego strokes – just like the rest of us.  One thing I can say in their favor: majority of them work awfully hard, putting in long hours each and every day over many decades of their lives. Depression and thoughts of suicide are apparently quite high among physicians, especially so for oncologists.

But there is no question that different expert centers “push” different clinical trials, the ones that they have invested in the most.  Unless you are willing to donate your body to science without really being aware of it, I think it is kind of important to know what you are signing up for, before you allow yourself to be sweet talked into it.  Below is a pop-quiz I published in an earlier article.  See if you can ace it.

A couple of years ago I got to know a very wealthy and determined member newly diagnosed with rather aggressive CLL. He got disillusioned with his local oncologist pretty quickly, for the usual reasons. He wanted nothing but the best in treating his disease, and he told me he can afford the best. He asked me for the names of the top five CLL expert centers to visit. He wanted to get guidance on his specific case from the best minds in the business.
I gave him the names of the five best centers – most of you who have been round the block for a few years can guess them easily. I also gave him a sealed envelope with the therapy recommendations I expected he would get from each of the five centers he was going to visit: FCR, PCR, flavopiridol, “gene therapy” and Campath.
My friend went to each of the five centers in turn, asked each expert he met to do detailed testing and prognosticating, expense be damned, and come up with the best therapy option custom-designed to his particular needs. Each center obliged, at significant cost. My friend is wealthy and did not care about that. Heck, he wore nothing but custom made clothes and custom made shoes, lived in a custom designed home that he shared with an almost-custom sculpted wife (snicker), why should he not get custom made therapy for his cancer?
He came back from his voyage of discovery chagrined and confused, with five completely different recommendations from the five expert centers. He then opened my sealed envelope and I am pleased to say I was spot on in my guesses. I could have saved him all that fuss and expense. I got all five recommendations exactly right and matched each recommendation correctly to the expert center. Each center felt the particular clinical trial they were focused on at that particular time was the best suited therapy option for my friend.
(Pop quiz: can you match each of these therapy recommendations with the expert center most likely to have made the recommendation? If you can, give yourself a pat on the back, you are now a savvy consumer of health-care.)

A couple of years ago I got to know a very wealthy and determined member newly diagnosed with rather aggressive CLL. He got disillusioned with his local oncologist pretty quickly, for the usual reasons. He wanted nothing but the best in treating his disease, and he told me he can afford the best. He asked me for the names of the top five CLL expert centers to visit. He wanted to get guidance on his specific case from the best minds in the business.

I gave him the names of the five best centers – most of you who have been round the block for a few years can guess them easily. I also gave him a sealed envelope with the therapy recommendations I expected he would get from each of the five centers he was going to visit: FCR, PCR, flavopiridol, “gene therapy” and Campath.

My friend went to each of the five centers in turn, asked each expert he met to do detailed testing and prognosticating, expense be damned, and come up with the best therapy option custom-designed to his particular needs. Each center obliged, at significant cost. My friend is wealthy and did not care about that. Heck, he wore nothing but custom made clothes and custom made shoes, lived in a custom designed home that he shared with an almost-custom sculpted wife (snicker), why should he not get custom made therapy for his cancer?

He came back from his voyage of discovery chagrined and confused, with five completely different recommendations from the five expert centers. He then opened my sealed envelope and I am pleased to say I was spot on in my guesses. I could have saved him all that fuss and expense. I got all five recommendations exactly right and matched each recommendation correctly to the expert center. Each center felt the particular clinical trial they were focused on at that particular time was the best suited therapy option for my friend.  Can you match each of these therapy recommendations with the expert center most likely to have made the recommendation? If you can, give yourself a pat on the back, you are now a savvy consumer of health-care.

Your Online “family”

Patients of today have online resources available to them that people did not have access to, just a decade ago.  When my husband PC was diagnosed back in the summer of 2001, ACOR listserv was just about the only online patient site available for CLL patients.  I joined, learned a lot, posted a few times and decided to leave to start my own group.  Our first attempt was a Yahoo group.  That lasted for six months or so, before PC and I decided to go the extra distance and start CLL Topics website.  And now we have “Updates” and “Harvey’s Journal“.

I am all for egalitarianism, the right of every person to have a voice and the right to be heard.  Except in the classroom.

As a new member visiting ACOR (or any of the present day internet chat rooms), how does one go about distinguishing the good information from plain silly stuff?  If you knew enough to make the distinction, you probably did not need to go to the chat room discussions in the first place.  Many moderators take the position of hands-off policy.  All comments and posts are welcome, as long as they are reasonably polite and respectful.  That may pass the test of political correctness, but in my humble opinion it does not serve patients well.  Updates is a moderated website.  I can and do moderate comments, deleting those that do not meet our guidelines.  You have no idea how many “fun” food fights we have avoided in the process!  Yes, there is no denying the fact that my moderation takes away the ‘rights’ of some of our members to post whatever they wanted.  But the other side of the coin - a truly unmoderated site - has its own downsides.

  • Do you want to base your own therapy decisions on anecdotal information that may have no value when it comes to your own situation?
  • Would you stay away from a well regarded therapy choice because of a vocal commenter who happened not to have had a good response and is now full of sour grapes and post purchase remorse?
  • Without some effort at quality control, who is looking out for protecting you from snake oil and ‘voodoo’ medicine?
  • Does it really help the process of learning about CLL when the site gets hijacked periodically by political / religious / other irrelevant issues?

How much can you out-source your CLL worries to your online buddies?  Your CLL has a sudden hiccup and you post about it on one of the internet forums.  A bunch of people write back, offering their good wishes, prayers and words of support.  All of which helps you feel better.  But does it really help you make better decisions?  When push comes to shove, you are still the one facing the decisions.  No one else can make the hard decisions for you, certainly not even patient advocates like me.

I think most of you know my own preference for pro-active patient participation in healthcare.  But that does not mean it is the “right” way to do things, or the only way of dealing with CLL.  True, it is a little bit easier making sure the help you are getting is not way out in the left field if you yourself know a little bit about the subject.  But that does not mean you have to become an expert, spend all of your time worrying about CLL to the exclusion of actually living the life you do have, or becoming paranoid about every little burp in the road of life.

Like all Goldilocks dilemmas, the right answer is very much dependent on the individual answering the question.  How much CLL out-sourcing is just right for you?  I look forward to your comments.

goldilocks