Tuesday, January 31, 2006

What is the aim of treatment? (part 3)

If the aims of treatment are to live as long as possible and as well as possible, it may be that these aims are not compatible. We can make you live longer but you won’t be as well or we can keep you well but you won’t live quite so long. What I mean is you may have to compromise.

There’s a quote from Edmund Burke, “All government, indeed every human benefit and enjoyment, every virtue, and every prudent act, is founded on compromise and barter.”

The compromise is this. Left alone CLL will probably kill you. Even in the most benign cases the ability to respond to infection seeps slowly away. On the other hand the treatment is harmful too; the harm it does also damages the immune system.

Let us examine these questions. Unless the Lord returns first we are all going to die. Someone once said, “Life is a sexually transmitted condition that is universally fatal.”

Death is caused by violence or disease. Assuming we are not murdered, hit by a bus or some other traumatic intervention our body will get a disease and no longer be able to sustain itself. Infection, cancer, heart disease, brain failure; we used to call it old age. We can dissect out the cause of old age, but we can’t do much about it. It’s like running an old car; replace the brakes and the muffler blows, the gaskets leak, the tyres are threadbare, the pistons rattle, bodywork rusts. These bodies wear out. With CLL they wear out quicker. My oldest survivor was 106. Without CLL she might have lived to 107.

CLL can kill in fairly obvious ways. Marrow failure opens the way to infection, bleeding and, without transfusion, heart failure from anemia. Infection is probably the single commonest cause of death. Another cancer, whether a melanoma, squamous cell cancer of the skin, lymphoma or lung cancer may seem just another bit of bad luck, but though it’s hard to prove, it probably wouldn’t have happened without the CLL. But no-one can put their hand on their heart and say that the treatment of the CLL didn’t make these outcomes more likely.

Sometimes the CLL gallops. It becomes inevitable that you have to put a halter on it to slow it down. But more often it canters, trots or walks. Sometimes it seems to stand still like a dressage pony making grandmother’s footsteps, now forward, now back. Then you have to decide how much treatment and when.

Except in the most virulent cases I prefer to take the long view. I’m not much interested in treating a blood count. Treating a blood count is like polishing the bodywork while the engine is disintegrating. I have two concerns. I want the bone marrow to go on making blood cells, and I want to stop the immune system falling apart. So unless the bone marrow is threatened I prefer to avoid treatment. The CLL will eat away at the immune system, but it will do it slowly. Every treatment that I know will make the immune system worse. There is no way of treating the CLL that will restore the damaged immune system.

So, supportive care is the first thing. Blood transfusion or erythropoietin to keep the haemoglobin high. Surgery for an uncomfortable spleen or one that is consuming red cells or platelets. Irradiation of large or uncomfortable peripheral lymph nodes. Antibiotics for infections. And when infections are caused by low serum immunoglobulins then intravenous immunoglobulin infusions on a regular basis. Do what you can to avoid having to have treatment.

If treatment is inevitable, my choice would be the treatment that is least harmful. At the moment this is rituximab. It only works in about half the patients, and it does lower the levels of normal B cells, but this is transient and they quickly return. Rituximab plus a growth factor like G-CSF or GM-CSF may well be more effective. So if it works for you and gives you a year off treatment then go for it, and don’t be afraid to repeat it. True rituximab resistance is very rare. In some patients increasing the dose will turn a non-responder into a responder.

It’s after that that you have to think about chemotherapy, and that is the subject of another article.

13 comments:

Anonymous said...

thank you Dr. Hamblin for the most honest thing I have ever read on CLL and treatment. I hope that everyone reads this.

Again bless your heart for being so giving to us on the ACOR list.

Elyse Burden

David Arenson said...

This post needs to be shouted from the rooftops!

Thank you, Terry. If there is one thing that should be required reading for a CLL patient -- and for doctors treating those patients -- it is this post of yours.

Anonymous said...

Bleak! I suspect that there are a number of other agents that can also provide palliative relief without permanently damaging the bone marrow.

Some of these newer agents are presently in clinical trials. Others are in pre-clinical or in animal testing. Others show only effects in the test tube, so far.

One such treatment, using existing drugs, is high dose methylprednisolone together with rituximab. Complete remissions have been reported. Many patients following such treatments are doing well and feeling fine, and have not permanently damaged their immune systems. Campath as a 'chaser' after HDMP+rituximab is also being offered to patients.

Gossypol (AT-101) and other agents such as green tea (EGCG), and even traditional chinese medicine have had some positive outcomes.

Anonymous said...

Interesting rhytm and rhyme - could be set to a rap beat!

Barry Lambert said...

Thank you, Dr Hamblin. I have read so much about CLL that it was getting difficult to see the forest for the trees. Your blog, and especially this most recent article, helps to correct this and put things into perspective. For someone who does not have aggressive CLL this is very important.

Anonymous said...

Your learned thoughts are very much appreciated by CLL patients and their loved ones.
We appreciate you, Terry!

Dick, in Florida

April Wilson said...

After reading this, I feel more prepared for decision making where CLL
is concerned. Thank you.

Chris Dwyer said...

I think you have stated what we all hope medicine to be. Help and care and understanding in a time of need.

In CLL I have problems with chemo therapy. History has proven it to be a slipper slope to death with a few years of respite if we are lucky.

I think the question facing CLL patients and doctors, is the cure worse than the cancer? Given your objectives to extend life as long as possibly, would a CLL patient be better off never being treated?

Has this ever occurred or is some medical intervention inevitable in our medical system?

Your viewpoint is certainly admirable.

Anonymous said...

With a dwindling immune system from both CLL and tx. I pray that the Lord returns!
(It helps to know what eternity holds for me.)

Jim McVey said...

Dear Terry Hamblin you are a breath of fresh air in this doctoring business. For me you are a reincarnation of Dr Cameron and Dr Findlay and of course Janet that Irish tap dancer the fastest in New York City. The cast of Dr. Findlay's Casebook.
I live in California amongst Production Line Doctors. After reading "What is the aim of treatment," I wonder how can we get them to read your treatise on CLL Treatment. I am sure it would be news to many. I will give my local Hem/Onc a copy.

roberta Joehle said...

WOW, this is so great and very appreciated. I am in the middle of research for treatment,my heart has always opted out of treatment all together that my body couldn't handle it. I know in my head that it may be a neccassary step eventually but I would like later instead of sooner. I have an oncologist who keeps well saying this,

Quote:*** hi; your WBC (lymphs) have climbed more and hemoglobin has dropped (although) still in normal range. As I mentioned to you in the past I would recommend chemo-immunotherapy to try and improve your energy, splen size and blood markers. It is not an emergency and you could watch it for a bit longer but you may feel better with such treatment and if so then you would have sufered through symptoms needlessly.***

And A hemotologist who says wait on treatment but keeps saying I should remove my spleen and eventually opt for a non-alabative stem cell transplantation.

NOW who is correct one only knows and this article helps confirm that one should pay attention to what our body says to us and listen. My only comment is you say "unless the bone marrow is threatened I prefer to avoid treatment" now what tests should one ask for to determin this fact. Everytime I ask for a sub70 or CD38 I get the comment it would not maek any difference with regard to my management.

So you can see why I am happy there are people such as yourself who are willing to be forward about things.

THANK YOU very much for being here.

Hugh Flint said...

As a dental surgeon with CLL I have now read this posting and like many, I suspect, now have a sensible, clear treatment approach clarified in my mind.

Bless you for all you do for us.

Hugh Flint

Anonymous said...

I have just found this post, and it is definitely the first time I have read such an honest thing! I am French and likely to be treated this year. I really wish I could avoid it.
Thank you for your help.

Anne