Monday, July 11, 2011

Helping Luiz outlive the rest of us

More times than I can count, Luiz, after revealing that he is living with Chronic Lymphocytic Leukemia, is hit with the blithe question: “Why don’t you just get a bone marrow transplant? That would be a cure, right?” Trust me, if that were the case we would have been there, done that by now.

Don’t get me wrong. We love that people are concerned and click into problem-solving mode when they learn of Luiz’s situation. But as most of you know, it’s better to hold your tongue until you know a little bit more about what you are talking about.
Let me take this opportunity to share some information that generally helps people understand why the “watch and wait” approach employed by cancer specialists in this field is the standard course of action for someone like Luiz. And then I’ll challenge readers to step up and be a part of the solution to Luiz’s long term worries. (I’m not asking for money.)
Chronic Lymphocytic Leukemia (CLL) is “chronic” because it progresses slowly in most cases, and people generally live with the disease for many years. (There are unfortunate exceptions, but Luiz definitely fits into the chronic category.) It’s true that it has been detected that Luiz’s bone marrow is producing white blood cells that are non-functioning and failing to die already and make way for more functioning cells. Over time this will lead to too many dud white blood cells taking up all the space and too few functioning white blood cells to adequately protect him from opportunistic infections. Thus is the simplified understanding of CLL.
Since it is our bone marrow that produces healthy white blood cells, we can see that Luiz’s bone marrow is asleep on the job.  Replacing his degenerate marrow with more enthusiastic marrow with a good work ethic would certainly be an improvement – if it were only that easy.
A bone marrow transplant is a life threatening procedure. In order to introduce a whole new colony of bone marrow ready to get to work, you would first have to destroy Luiz’s immune system so it doesn’t go after the new marrow as enemy tissue.  That means ridiculously high (life-threatening) doses of chemotherapy and radiation to strip him of his natural ability to fend off infection. Then you have to hope that the new marrow doesn’t go crazy thinking that it is now in an alien and enemy organism that it must destroy – going after Luiz’s cells (graft versus host disease).
So things can go wrong going in and things can go wrong coming out of the procedure. That’s a lot of risk for a patient that continues to live a-symptomatically for the time being. Better to watch and wait.
If and when Luiz’s disease (or the symptoms thereof) become more life threatening than the risk of the “solution,” then, and only then, will we move for transplantation. It is generally considered a final stage Hail Mary pass. But hey – when it works, it works great for the patient!

Oh – I forgot to mention the difficulty finding a suitable bone marrow donor. None of the possible good health outcomes are even in the picture if we cannot find a suitable donor.  The best-chance possible donors are brothers or sisters. Luiz is an only child.
According to the National Cancer Institute in Rio, the leading bone marrow transplantation facility in Brazil, the odds of finding a non-first-relative bone marrow donor match are about 1 in 100,000. That’s the bad news.
The good news is that Brazil maintains the third largest registry of volunteer bone marrow donors in the world, the US and Germany being first and second respectively. Better yet, most countries with a donor registry participate in a global registry that lists more than 18 million donors from 47 countries. That helps close the odds a bit.

So here’s where you can be a part of the solution for Luiz and others, when the time comes. Register as a bone marrow donor volunteer. In the USA you can do this from the comfort of your home (the "Be the Match" National Marrow Donor Program will send you a kit and all you need to do is take a cheek swab for testing). In Brazil blood centers in every state will draw just 5ml of blood for testing. (No appointment necessary at INCA in Rio.) In the US, donors must be between the ages of 18 - 60; in Brazil it is between 18 - 55.
Once you are registered, the chances of your being called upon to be a donor are less than 1 in 500. However, if you have the opportunity to donate, the procedure is nearly painless and totally risk free. Localized discomfort from the procedure will likely not last even a weeks’ time. Less than 2% of your bone marrow will be extracted and this will be naturally regenerated by your body in about a month.
So what do you say? Can you spare a little time to join the global bone marrow donor volunteer registry – and maybe save a life? The life you save may be one we all love and hold very dear.

Follow these links for additional information about being a donor volunteer in the USA, Brazil and beyond.
And I want to acknowledge this column by Chris McGowen on the Huffington Post that stirred me to post something similar (using some of his words) on my blog.
Thank you in advance for whatever you may be able to do in this effort. Feel free to re-post on your blog or to your Facebook page. We are working to surmount the odds.


Ray and Gil said...


This is a great post!
Gil and I are already registered both in Sao Paulo and in Boston.
Thanks for sharing all these great links and all this valuable information.


Jana @ Paper plains said...

Wow, I had no idea! Thanks for sharing all of this as it is really quite eye opening on many levels. I will certainly sign up to be a donor! Wishing Luiz all the best and I hope it doesn't even have to come to that...

GingerV said...

excellent post. Good information is hard to come by. By the end I was ready to go active just to find that I am over-aged.
My father died of emphysema - his last two years he had seizures from too many red blood cells.
I have great admiration for you both and your right-on approach to living each day to the max. hugs to you

Jim said...

Thanks all - please share this information with your network of friends and family. We truly need to move millions to register.

Our hearts are in this. And we want Luiz to be a success story.

Mil beijos --

Nina said...

My mother is registered and donated bone marrow to my aunt who went through the same as Luiz. However, my aunt was 79 when she was diagnosed and that as you know is just impossible. Although she did try the transplant at 82, even though the doctors said not to.

I too should (register), but I really scared. People have described donating to be very painful.

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