Monday, October 08, 2007

The Mayo Clinic's CLL Quality of Life study, or Groundhog Day revisited

I just took a look at the Mayo Clinic’s newly-published Quality of Life survey of some 1500 patients with chronic lymphocytic leukemia. The study concludes, not surprisingly, that while our “physical, social/family, functional, and overall QOL scores . . . were similar to or better than published population norms . . . the emotional well-being scores of CLL patients were dramatically lower than that of both the general population and patients with other types of cancer.”

On behalf of CLL patients everywhere, let me say this: We told you so.

The authors discus
s the reasons behind their finding:

“Notably the emotional QOL score of CLL patients was lower th
an the general population at all stages of the disease. Because most early stage CLL patients have no disease-related symptoms, and typically have a better prognosis than other types of cancer, this psychological effect of the disease may be under appreciated by many physicians. CLL differs from most other types of cancer in that most patients with early stage disease are not immediately treated, which can cause emotional distress for patients who feel that ‘nothing is being done’.”

I submit that there are
some other fundamental reasons why CLL is so hard on the emotions, but let’s take that “watch and wait” issue first.

Waiting for the accident, then watching it happen

“Watchful waiting,” aka “watch and wait,” is an exquisite form of torture. It is, by consensus of the experts, the
recommended initial course of action for patients with CLL. It stems from the medical theory that since there’s ultimately nothing we can do to stop the CLL, there’s no point in treating it before we have to (such treatment bringing with it its own set of toxicities, as well as disease resistance that eventually renders the disease untreatable).

By its very nature, then, the theory of W&W is underpinned by a certain degree of helplessness, and therefore hopelessness.

There’s a reason pa
tients sometimes think of “W&W” as “watch and worry.” W&W can be compared to driving across an intersection and seeing a truck running a red light on your left. W&W is the time that elapses between “Omigod, we’re going to be hit by that truck!” and the actual broadsiding -- but considerably more drawn out, of course.

The “exquisite,” in the
exquisite form of torture, worthy of Torquemada himself, is that W&W also provides patients with hope up until the very moment of impact.

“Hey, maybe the truck will
miss me after all,” we say. “What if I can ride this thing out, avoid treatment or serious ill effects from my CLL?”

For those with truly indolent CLL -- what Dr. Terry Hamblin calls asymptomatic lymphocytosis or low-level disease that might also be termed the “Goody Two Shoes Cancer” (regular old CLL being the “Good Cancer,” of course) -- the truck may indeed miss.

But for many of us, the roar of the truck is never far away, even as hope -- and our body’s ever-eroding stamina in the face of the disease -- somehow gets us down the road.

The death of
a thousand cuts

The Mayo authors point out that CLL patients do not become happier as time goes on. There’s an obvious reason for this: as the disease progresses, quality of life
erodes. Immunity is degraded and patients become more easily susceptible to infections; they come down with related conditions such as ITP and AIHA; they set out on the chemo highway and find that despite remissions, disease resistance builds. What once had seemed to be a manageable and tolerable disease becomes a constant source of medical testing, doctor visiting, and worry over whether things that go bump in the night are the sword of Damocles falling.

It can start to feel like the death of a thousand cuts, with no hope
for a reprieve, save perhaps a risky stem cell transplant, assuming you can find a donor and have the insurance to pay for it.

And this, I think, is why CLL patients are in greater emotional distress than those with other cancers: With most cancers, you are diagnosed, the treatment options are pretty obvious, you fight the f
ight, and it’s over. You win or lose. You either go on with your life or you go into the afterlife.

CLL is like the movie Groundhog Day, in which actor Bill Murray finds himself waking up in the morning and reliving the same day over and over. CLL never seems to end. One wakes up to the same thing day after day and month after month and year after year, with the added negative that for many patients there is an overall decline in immunity and health as time goes on.

The roller coaster from hell

For those whose disease is showing clinical signs of progression, CLL can be an endless roller coaster of worry and relief, disappointment and elation, and more worry.

Here is what happened to some people I know in one recent week:

Patient A, who achieved a good partial remission with FCR therapy three years ago, had been noticing that his lymph nodes were returning. He and his wife were worried that this was a sign of relapse. They went to the doctor and found out that, no, it was “just” a viral infection. Still, they know that relapse will come soon. They have discussed the treatment options with a CLL expert, who said Patient A has maybe ten years to live, no matter what is done. Did they get good news or bad? Was it a blessing or a curse?

Patient B, who has g
ood prognostics and has never needed treatment, goes to a CLL expert for a routine visit. Midway through, the expert looks through blood tests and is very concerned: the patient’s platelets have crashed. Treatment is imminent. Then, after the patient is good and scared, the doctor realizes he is reading someone else’s CBC, that of Patient C. Patient B is relieved but emotionally exhausted and angry about the mistake. Patient C is in for a rude awakening.

Patient D is being given steroids prior to his Rituxan infusions, as is standard practice to reduce infusion reactions. But after his Rituxan infusion, the white count rises dram
atically, doesn’t fall as it has in the past. What is going on? It turns out, after much investigation and loss of sleep, that the nurses are giving him much bigger doses of steroid than required, astronomically so. The white count is higher because CLL cells are being pushed out of the marrow and lymph nodes by the steroids. A mistake has been made --and the patient and his wife are left to wonder what the consequences will be, for good or ill.

There are worse stories, ones far more worrisome and mind-numbing and emotionally exhausting than those. Go to any patient forum and you will read the sagas of people who are dealing with immediate crises, strange symptoms, test results that may or may not clarify what is going on, confusing treatment choices that tend to range from bad to worse, and doctors and nurses who may or may not have a clue.

The bottom line: CLLers deal with two kinds of fatigue: physical fatigue and battle fatigue.

Life in the leukemia foxhole

But like soldiers on the front lines, we have developed a certain camaraderie. Patients do a lot to help each other cope. Discussion sites such as CLL Forum provide a needed outlet for the anger, fear, sadness, and worry that we all experience some time or another. (CLL Forum even has an area called the CLL Pit, which is there for unbridled ranting.)

Not that all of us need to rant all the time. Some patients have managed to transcend the emotional turmoil pretty well. There are those who wake up in the morning and are just thankful to be alive and have another day to enjoy with their loved ones. I daresay most of us start the day with that thought. But the events that sometimes follow leave even the sunniest of us with dark clouds to shoo away, which is not always easy.

There was a quote from a patient with a different, worse cancer that I recently put in the “Quotes I Like” section on the right side of this page:

"I had a choice to make when they said I was going to die. I could chose to live the rest of my life dying, or I could chose to live life until I die. And I chose to live life.”

That is a marvelous outlook, and one that I know many of us try to emulate. But it is clear -- and now officially documented in the Mayo study, which will give the emotional dimension of our disease some much-needed respect and attention -- that it is not always easy. And with progressing CLL, it pretty much never is.


To read the Mayo study, you can contact Chaya Venkat at CLL Topics. Topics was instrumental in getting the study done and Chaya shares billing as one of the authors. She is an example of someone who has taken the CLL lemon and, even though it is sometimes damned near impossible, found a way to make lemonade for the rest of us.

You can also find a downloadable PDF of the study at CLL Forum, which obtained permission from the study's Australian publisher to make it available for personal use. You will need to be a member of the forum to access the link I have provided. (If you decide to join, say hello to me when you get there; I am one of the moderators.) There is a discussion of the study at CLL Forum and of quality of life issues in general.


Take a listen to Boogie Through Life from T. Ray's CLL Chronicle.


Michael said...

What an excllent piece of writing and examples are right on target.
Couldn't agree more with the "battle fatigue"!! Keep up the fight and writing

Anonymous said...

Some thoughts:

We are all going to die sometime. None of us escapes. We just have a vivid reminder of that fact. Since we are all born with a death sentence written by God, we all have a limited time and we all need to live the best life possible.

I would rather live with the uncertainty of CLL than be dead. It is indeed unnerving to get a bad cold or a sudden harsh cough and wonder, is this the end? One day, it will be. This again is a reminder of the fragility of life.

I hate reading about those who have lost the battle. Foremost, it is the loss of a fellow traveler, a fellow combatant. Secondly, it is a stark reminder of the cruelness of this disease.

Watch and wait is a blessing, really. Chemo for other diseases often is extremely unpleasant. We can postpone that, many times for years.

CLL gives us the chance to tidy up our affairs, finish that living trust, mend relationships, see a long-lost relative, and make peace with one's self and the world. Do the things that need doing. Go on that long-delayed trip. Tell your loved ones that they are indeed loved. Give them permission to go on with their lives, remarry, whatever.

Those of us on the front lines, storming the beaches, pinned down by enemy fire, are in a different place than the healthy unawares.

God has given us the gift of time to do all of those things.

David Arenson said...

"God has given us the gift of time to do all of those things."

I do agree with you -- It is a gift and I'd rather have the time than not. We can use it for a lot of the valuable things you mentioned.

It can nonetheless be a struggle. I know a stem cell transplant lies at the end of my CLL road. As much as it scares me sometimes, I also get a sense of relief when I think about it because there will be some resolution to this wearying fight.

So the time is a gift and a curse; more of a gift to be sure, but in the context of the Mayo study I tried to examine the reasons why patients are unhappy and, unfortunately, I had to focus on the negatives.

The positives still outweigh them, for sure.

Jenny Lou said...

Great piece, David. Just to show how frustratin this cancer can be, here is a direct quote via tape recorder from Dr. Keating this month during Tom's visit with him.

"We like to pretend that medicine is an exact science and that is hogwash. We work within ranges and often times we don't know what's important or what's happening to people."

Hope and Faith said...

Hi David. I am glad I found you. I am a CLL fighter living in Singapore (somewhere in south east asia) and I am only 25 when I found out about my condition. Half your age.

It was an extremely rare condition over here as it usually occurs mostly to older people and non-chinese, namely westerners, and more possibility in men than women. I am very young, Chinese and a woman. Seems like someone up there decides to pull a fast one on me.

So I am living with this for 1 yr now, not knowing what is going to happen and my doc only tells me to watch and wait. I dunno what can I do to help it gets better, or what is ahead.

Thus I am really happy to have found your blog. Keep on writing. And thank you!

Anonymous said...

Fabulous article. I don't think people understand just how difficult it is to have a chronic disease that may, or may not, get worse. That may, or may not, respond to treatment. I get frustrated when someone refers to me as a survivor. To me, a survivor is someone who has beaten cancer, not someone who faces it each morning. I like the term fighter better.

Anonymous said...

My personal opinion is this is a study that really didn't need to be done. OBVIOUSLY cancer is a bummer! OBVIOUSLY it weighs heavy on every patient. OBVIOUSLY quality of life will be affected.

Given the fact that the amount of money devoted to cancer research is declining since September 11 and our fun time in Iraq, wouldn't this money be better spent finding a cure?

With a cure, the mental problems would...evaporate.

Titan23 said...


Michael, you are obviously a darn good writer. However, I would caution you or anyone about romanticizing your condition unless you want to die from it.

I was diagnosed with CLL – Stage 4 in 1999. Today I am free of it and have been for at least five years. I opted not to fall for the drug and BMT schemes that Big Medicine tried to sell me. I was on Medicare and could have had a BMT for “free,” if I had wanted to go that route, but I decided that there had to be better alternatives.

I searched and after a lot of trial and error I finally found the answer. For me I feel it was two things. I think that a bad root canal caused my CLL. After I had that tooth removed, I used Coral Calcium to help clean up my blood.

I would suggest to anyone suffering from a chronic illness such as CLL to investigate Dr. George Meinig’s book, Root Canal Cover-Up - There is a lot of discussion on the web as well about the bad effects of root canals gone bad and cavitations of pulled teeth. If you want to read more about my own story, I posted a couple of articles on my blog: or

I am not selling anything, I just hope this simple information about my own cure helps more people heal their affliction.

Anonymous said...

Thank you for your article. I "know" I'm not the only one feeling these things but it's nice to see it in writing. My husband is battling CLL right now and is not responding well to standard chemo. Next week we start the process of a "mini"- bone marrow transplant. He's sleeping more and more and the glands keep coming back. Every day I wonder if he's not going to wake up one morning. I know that God is in control and I am trying hard to leave it in His hands but I'm really afraid.