Thursday, October 11, 2007

October 11, 2007 - The Long Haul

There’s an insightful post on David Arenson’s “CLL Diary” blog for October 8th (CLL, for those who may not be familiar with the acronym, stands for “chronic lymphocytic leukemia”).

CLL has some affinities with indolent Non-Hodgkin Lymphoma. Both are blood cancers of the immune system. Both are more-or-less incurable, but very treatable. Both are the sort of disease you live with for a very long time, without getting better and only gradually getting worse.

David cites a recently-published study by the Mayo Clinic of the quality of life of CLL patients. One conclusion is that while “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.”

The reason? Many CLL patients spend a very long time in “watch and wait” mode, experiencing low-level anxiety that’s grueling in the long term. There’s a certain helplessness that goes along with the disease, David says. It’s like the agonizing moment in the midst of a car accident, when you know another vehicle’s going to hit you, but there’s nothing you can do about it – only that moment is stretched out, in slow motion, over the course of years.

From David’s blog:

“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...; 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 fight, and it’s over. You win or lose. You either go on with your life or you go into the afterlife....

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.”

So, is this the way ahead for me? Or, do I have some chance of breaking the curse?

It’s a spiritual question, one that I think I may need to start addressing in a determined way.

Therapy? Spiritual direction? A more consistent exercise regimen? A program of personal retreats? I’m not sure which one is the best way forward. I’d better start doing something, though, or else risk a slow slide downward.


Anonymous said...

Going on and on with a gradual decline in health toward the end? Sounds a lot like life!

Carl said...

Yeah, I alluded to that in the previous day's post. It does sound a lot like life - though maybe we cancer patients can look on our disease as a teacher, reminding us of truths others are inclined to deny, until rather late in life.

Still, the cancer is sort of a monkey (or maybe a sloth?) on our backs.

Anonymous said...

It is important to get the facts right, since CLL has been called everything from a "good cancer" to "the cancer to get, if you must get cancer". Nothing is further from the truth. Its Cancer, period.

You said:
CLL has some affinities with indolent Non-Hodgkin Lymphoma (NHS)

This is not really true. In general NHS can be treated with mono-clonal antibodies and responds very well. CLL does not.

Both are blood cancers of the immune system.

No. They are both cancers. CLL is a cancer of the bone marrow, that we see in the blood as malignant B cells. NHL is a lymphoma and effects the lymphocytes that are made and stored in the lymph nodes.

Both are more-or-less incurable, but very treatable

No, Both are incurable. CLL is treatable but, the treatment compromises an already damaged immune system further. NHL is probably considered to be MORE treatable than CLL.

Both are the sort of disease you live with for a very long time, without getting better and only gradually getting worse

This is only partially true. We now know that there are at least 3 and probably more different courses for CLL. They run from aggressive to indolent. Life expectance generally runs from 3 years to 10 years on average. NHL runs a single course. Both are staged cancers and are usually only treated in the later stages.

While I agree with David in general, I'm convinced that there is a physical trigger for depression in CLL, that we currently know nothing about. It has certainly effected me, but can be controlled well with medication and counselling.

Chris Dwyer
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Carl said...

Chris, there's evidently some disagreement between the way you and David Arenson view CLL, but I'm not sure I would view it in such absolute, truth-vs.-falsehood terms. You respond to some of my statements in the same sort of absolute terms. Let me respond to several of your specific points:

First, I said NHL and CLL have SOME affinities. That's a far cry from saying they are the same.

Second, the bone marrow is part of the immune system, so I still think it is correct to say that both are blood cancers of the immune system. Leukemia and lymphoma are generally grouped under the label, "blood cancers." My understanding is that lymphocytes are manufactured in the bone marrow, not in the lymph nodes, as you indicate.

Third, some forms of NHL are curable. Indolent NHL is not generally regarded to be curable, but some are beginning to look to bone marrow transplants as "potentially curative" - which are the exact words I've heard from doctors I've seen at Memorial Sloan-Kettering and Hackensack University Medical Center, respectively. (There's heavy emphasis on the word "potentially," because bone-marrow transplantation has not been used for indolent NHL long enough for doctors to say for sure - although the signs are promising.)

As for whether or not either NHL or CLL is "worse" than the other, I would never endeavor to make such a comparison, myself, and hope you didn't think I was implying such. What attracted me about David's blog posting, that led me to quote excerpts here, was what he said about the long-term emotional difficulties of living through the "watch and wait" approach to the disease. I think it's fair to say that NHL and CLL patients can learn from each other.

I'm sorry to hear of your difficulties with depression. I'm sure there is a physical trigger for depression with cancer, generally - since depression clearly has a physical component.