There is no evidence that early treatment improves survival in CLL compared to watching and waiting until symptoms arrive. Because the potential side effects of the treatment are so worrying many patients are quite pleased when their doctor tells them that there is not treatment necessary at the present time. However, because treatment is so scary there is a great temptation to prolong the watching and waiting beyond the time when NCI guidelines suggest that treatment should begin. This can be dangerous.
The NCI guidelines should be interpreted sensibly. Fatigue, for example must be the sort of fatigue that disables; that prevents a patient from carrying out normal activities like going to work or managing the house work. It shouldn't be just the 'tired all the time' symptom that is the commonest reason for doing a blood test. Similarly night sweats should be out of the ordinary, not just what most of us get on a hot summer night. Similarly, one platelet count of 95 should not trigger a rush to treatment. Patients with enlarged spleens often have a slightly low platelet count and it doesn't necessarily mean treatment needs to start there and then. The platelet count needs to be falling progressively.
On the other hand patients are apt to let their spleens enlarge and their lymph nodes grow bigger and still put off treatment. The reason that this is dangerous is that it is much more difficult to treat bulky disease than less bulky disease. It is all a question of bone marrow reserve. The drugs used in CLL tend to cause pancytopenia. If they are given late in the disease they cause worse pancytopenia because more of the marrow has been replaced by CLL cells.
As with all things the right course in the treatment of CLL is a moderate one - between the two extremes.
Where does the WBC fit into this? We keep hearing "we don't treat white counts" in the absence of other symptoms, but my doc looks pale every time my counts jump even tho RBC is normal, platelets are normal, no nodes, no symptoms. I can't put understand the constant monitoring of the WBC if "only 2% are circulating" and only the doubling time is significant. And while we are on the subject, it is hard to believe that no one can tell at what point the RBC's will start to fall in relation to the WBC's rising. There is obviously a relationship.
ReplyDeleteDoesn't this sort of contradict your advice from January '06 that I an others interpreted as saying you should delay treatment until you were about on your deathbed?
ReplyDeleteMy oncologist kept saying, wait, wait, and then he suddenly decided to advise treatment, but by then I was declining rapidly, and absolutely required treatment.
Did I wait too long? I know you can't answer that, but I ask myself that all of the time.
I had a poor response to my first treatment and never got a complete remission. Just a partial remission I'm coming out of already.
We monitor the white count because the doubling time is a good surrogate for how rapidly the disease is progressing.
ReplyDeleteThis post is not contradicting my previous post. I am trying to strike a balance.
Treatment should begin at the right time. Not to soon and not too late.
The second paragraph, fourth sentence should read, "Similarly, one platelet count of 95 should NOT trigger a rush to treatment."
ReplyDeleteI know that is what you meant.
I delayed treatment too long myself. I agree that one may get oneself in real trouble.
We need better drugs right off the bat. 50 years from now they will shake their heads in bewilderment that we didn't treat CLL when first diagnosed.
Thanks,
ReplyDeleteI've corrected it.
I think we'd all agree that treatment should be at the right time -- not too soon, and not too late. But determining when that time is happens to be an enormous challenge. This is where the art of medicine comes in, and not all doctors are artful. The NCI guidelines provide some sort of system, a "paint by nunbers" chart if you will, but even then there is room for judgment calls. This is what makes it so maddening for us patients sometimes -- different doctors, looking at the same patient, can suggest different courses to follow. I saw two experts within six weeks of each other and one said treat with RF, the other said continue to watch and wait.
ReplyDeleteI have wrestled with this dilemma in the last twelve months, but I believe that my Doc had me pegged correctly about twelve months before I actually started treatment.
ReplyDeleteYou are correct about Mothering Sunday too! Hey Ho!
Dear Dr. Hamblin,
ReplyDeleteWhen I met you I was living in The Netherlands which has a compassionate form of government, where everyone has health care. Now I live in the USA where even people who have had long and successful careers often do not have any form of health insurance. This includes me.
If these treatments do not strengthen your immune system (maybe even make it less effective), and they are not proven to extend life span, then honest: What is the justification for the expense and inflicting all of the negative side effects?
Best Regards,
Paul Garland
El Paso, Texas USA
This comment has been removed by a blog administrator.
ReplyDeleteTerry,
ReplyDeleteI have a question based on the following from your post:
"On the other hand patients are apt to let their spleens enlarge and their lymph nodes grow bigger and still put off treatment. The reason that this is dangerous is that it is much more difficult to treat bulky disease than less bulky disease."
I'd like to know if there is a preferred protocol for CLL when bulky, fast-growing lymph nodes and a significant recent drop in hemoglobin are the prevailing symptoms? This would help me evaluate my course of treatment.
I'm chemo-naive and planning to start treatment in several weeks at Sloan-Kettering. My six largest lymph nodes, used as reference points in a recent CAT scan, averaged 300% increase in volume over 29 months if I multiply one dimension by another (eg: 36 mm x 21 mm = 756 mm^2). My spleen enlarged by 72% over the same period.
My hemoglobin recently dipped below 11 after holding steady for four years in the 14 range. My WBC has progressed from 10400 to 16000 over four years of W+W. My Zap-70 and karotype are normal; CD38 wasn't expressed on a recent FISH test. Neutrophils have declined to 12.4 recently from 20.0 on 7/04. I've recently begun to lose weight and no longer can maintain even a minimal exercise regimen, which had been 30 mins every three days.
My oncologist at Sloan-Kettering, a member of Mark Weiss's team, is offering me PCR on a Phase II trial though I'm reluctant to participate without a better explanation of why that's the preferred course for me.
To recap: I'd like to ask you is whether there is some preferred standard treatment when CLL is centered in the lymph nodes and accompanied by my diagnostics.
Many thanks!
Mark
Mark
ReplyDeleteFCR is the current industry standard. PCR is similar but more expensive and not shown to be better. However, you haven't had a FISH test. CD38 is measured by FLOW. You need to know whether tou have del 17p by FISH before starting therapy.