Tuesday, February 8, 2011

Moral Dilemma

One of my web search spiders found this news article about a newly diagnosed younger man with CLL who seemed to be rushed into very aggressive inhospital therapy within less than a week of diagnosis by his local oncologist in his small town (well small by LA standards).

I paraphrase the article:

... was told by doctors Jan. 26 that he has chronic lymphocytic leukemia, a disease that causes the accumulation of too many mature white blood cells called lymphocytes.

The condition can be treated, according to ...'s family and a local oncologist.

... began receiving 24/7 continuos chemotherapy treatments at the beginning of the month at .... Hospital. He is to going to get seven straight days of treatments and must be in hospital the entire time.

This set off all kind of alarm bells for me. Early aggressive treatment is almost never needed in CLL and in some cases can clearly shorten the patent's life by exposing them to unneeded chemo that can turn a smoldering sleepy CLL into an aggressive hungry beast that is hard to knock back.

Sadly, I have seen well meaning community oncologists do that more than once.

And more concerns. Why in-hospital? What weird 24/7 day therapy is he getting?

It was not adding up.

So I searched and found the fellow's email address and carefully composed this letter, but was hesitant to send it.

Dear Mr .....,

I read an article on your recent diagnosis of CLL and and as a fellow victim of CLL, I am bold enough to suggest that there are many resources to help you in your battles ahead.



There are many more sources of help on the web and near you.

I may be bold, but not so bold or stupid to offer any medical advice by email. Whatever I say, please consult with your personal doctors. I obviously know nothing of your particular case and so my comments are general.

It is rare to need immediate treatment for CLL. Most, but not all patients are best advised to avoid early chemo if possible. I usually recommend that it is best to get a CLL expert for a second opinion from the start before starting any therapy. CLL is quite rare and most local oncologists are not experienced with the nuances of its treatment.

I wish you the best and if I can help in anyway, please email. Again, I am not suggesting that you delay or change any recommended therapies.

Brian Koffman

bkoffman.blogspot.com

You see how careful I must be. This stranger didn't email me, didn't ask for my help. and didn't even post on a CLL list. I found him through an article that made a local paper because of his high community profile. Sounds like a sweet guy maybe heading off a cliff, but what do I know? What right do I have to interfere and especially to plant seeds of doubt in his already most assuredly overwhelmed mind?

But how do I live with myself if I do nothing. Mustn't I fire a shot across his bow to warn him to get some help and quite possibly radically change course.

At my wife's urging, I decided to let it sit for a while and see if I could find out more about the guy.

Pay dirt!

He has a Caringbridge page. There are already multiple posts by his wife. I read them as they appear, from the last to the first. My heart sinks more. He already has almost finished his chemo, and will soon be on his way home, so I sure need to modify my planned email. No point in making him feel bad about chemo he has already had. No point in calling the fireman when the house is burnt down.

None of the posts contain mention of the drugs in the cocktail he is getting. No physical findings or even the most basic lab results such as a CBC are listed. Well, not everyone is medically oriented.

I finally get to page one and it turns out that my Mr ..... was ultimately diagnosed with hairy cell leukemia, not CLL after all.

The need to send him my email evaporates. His rush to therapy in hospital and the "weird" therapy makes perfect sense. The pieces fit together.

Moral dilemma and problem solved.

For this case.

But it raised the bigger issue. How do I get the word out to all who are newly diagnosed to get a second opinion and don't rush into therapy ?

What is my responsibility? And liability as a doctor?

I welcome your comments.

Lessons learned? Just like in CLL itself, there is almost never a need to rush to judgement in offering counsel. Dig deep, research, read, and reread, and then stop and think, ask your spouse to review your plan, and maybe then act.

As Jon Kabat-Zinn said so long ago that I almost forgot:

Meditate, act, and be aware

On a personal note I am in the infusion center now for IVIg and my Hgb is a very normal 14.9 and my platelets have climbed to 411,000. WOW! Guess the results two weeks ago were just a lab aberration. Or maybe it was my week of a strict cleansing raw diet. It is probably the lab.

Liver tests are pending.

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5 Comments:

Anonymous Anonymous said...

I can think of one reason for quick treatment, and that is AML, what I had 8 years ago. I at least had Sabbath, and Sunday, to do my research, and I did. I knew going into MD Anderson, that I needed to have M4eo, or M2(8,28) or M3, so my chances of making it were better, and yes I had M4eo. I did my research throughout the whole time, sometimes to my doctor's disliking!

February 8, 2011 at 3:40 PM  
Anonymous Anonymous said...

Such an interesting post. Twice I've run into dilemmas watching the treatment of others.

My local fish wrap of a newspaper did a very sad article on a family that had lost its house and then the mother of four was diagnosed with thymic carcinoma. The article went on to say "She found a less-invasive, lesser-known treatment called Insulin Potentiation Therapy (IPT), which delivers smaller, more targeted doses of chemotherapy chemicals." The treatment was only available in Oceanside, a long ways from the Sierra foothills. Then the article posted a website, which seemed to be the "clinic" offering this "treatment" where one could go and "donate" towards her treatment. I was horrified after doing some googling that the newspaper was promoting this treatment for this poor woman. The story was a tear jerker and the treatment looked totally bogus - insulin as chemo and touted as a "one chemo fits all". I called the newspaper and had a long conversation with the young (24 yrs old) woman who wrote it. She was clueless .. had done no research before writing this story etc. There was never a follow-up story and I can't imagine what that woman, who felt she couldn't stand the ravages of chemo and tend to her children, is going through.

My second dilemma is a good friend with follicular lymphoma who has chosen to cure / tend to herself using only the Gershon treatment .. she is constantly juicing and doing the other not so wonderful stuff to herself. Her spirits are good, but she is so thin. This method, with its coffee enemas etc. seems another bogus treatment, with Mexican clinics etc. I tried once to invite her to join me at the San Francisco LRF annual patient meeting, but she clearly has no interest in traditional treatments. So sad as hers may be a curable case. I respect her choice and stay quiet but that is not my nature so it is very difficult.

Thank you Brian for your story as it allows me to vent my own experience.

As you say, we are all in this together !!

Lynn

February 9, 2011 at 11:41 AM  
Anonymous Linda Morse said...

Being your patient as long as I was gave me some insight into your spirit. I would have expected no less from you in this situation. You have an inherent need to help if you can. Trust yourself.

Had you sent the e-mail right away, it would have been okay, you would likely have been told it wasn't CLL. No harm done. My hunch is you already do as much as possible to help those who are newly diagnosed. You also have a hunger for more and more information and are the most aware doctor I have ever known. You answered your own questions.

Very glad to see your latest test results! Keep up with your vigilance and your writing.

February 9, 2011 at 4:34 PM  
Anonymous stacie tamaki said...

How do you warn others? Use the internet and your blog by creating detailed blog posts newly diagnosed patients can easily find with the inevitable search queries they will use to seek answers about their condition:

Newly Diagnosed with CLL
What is CLL
Treatment Options for CLL
CLL and Early Aggressive Chemotherapy
Chemotherapy and CLL

If you create blog posts using these titles, you may very well intercept a newly diagnosed patient, or their friend or family member, before they begin chemo and can offer your point of view and options to consider that they can then go ask their doctor(s) about.

February 15, 2011 at 8:31 AM  
Blogger pkenn said...

Brian - I have just been catching up with your blog after a break myself due to a dead hard drive which it took my apple store forever to replace. They messed things up so badly that they ordered the wrong replacement and I ended up with a free upgrade as a result. :)

First, I'm happy to see that boring is part of the description of your medical condition (a few posts after this one). Boring is my favorite word in medicine!

As to your dilemma about getting the word out about taking the time to get at least a second opinion and educating oneself before starting treatment for CLL, I think it is the responsibility of all of us who understand the issue, not just you, to keep putting out the word on the various web sites every time there is a post that gives us that opportunity. It's something I do as often as possible on the sites you mentioned and the yahoo group either on the site or off list, as I was rushed into treatment when I was first diagnosed. It was the wrong treatment for my "flavor" of CLL, but after 5 years of trying to get a diagnosis I wanted to come out fighting and only knew that the sites I found googling CLL said that I'd be dead in 5 years

. Thank goodness for a great nephrologist who recognized that I'm one of those rare cases which involve my kidneys and a great friend, who is an MD who connected me with some of the best doctors at UCLA.

What scares me now is the CLL Facebook page which a friend told me about. The people who post seem to have their heads in the sand and the administrator is no better. Lots of hugs and warm fuzzies or, as the administrator told one woman about her depressed husband, patients should "suck it up".

You have a good list of resources here and the topic of resources has also been on the yahoo group this week. I think we need to co-ordinate lists and sources of support - emotional, educational, and financial, with the most basic advice about where to start, that we can cut and paste and post to the various groups on a regular basis. This would involve getting approval from administrators, but I can't imagine them turning down the idea if it is well done and approached with tact. I would love to work on this with you, if you think the idea has merit. A long answer to a short question!

Pat

March 23, 2011 at 12:57 AM  

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