... 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.
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.
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