Friday, May 9, 2008

Luiz's Health Update


And so it starts: Luiz’s cancer journey in Brazil. Of course it began in San Francisco in November, 2007 when after ordering routine blood work to check on his diabetes our doctor veered off course and announced he had Chronic Lymphocytic Leukemia (CLL) But that was then.

A lot has happened since November. Lots of distractions: visiting my family in Florida, the move to Niterói, visioning our new home and new life in Brazil. Making it happen. Luiz’s symptom-less days strung together for a full, distracted six months. But we were always quietly setting things up to engage with the health care system.

Luiz has enrolled with a very good health insurance company, Unimed, which will allow us to seek high quality care in the private sector. Monthly premiums are within reach (US$130) and there are no co-pays or deductibles.

We met with a hematologist a couple of weeks ago to get acquainted. His English is very good. I brought with me the already thick binder of lab test results from Kaiser in San Francisco, along with numerous articles I’ve researched to help understand the benchmarks to watch as we move forward. Consistent with my style of insisting on peer-like relationships with health care providers (even if that is quite unusual here in Brazil) I posed a series of questions to Dr. Roberto demonstrating we were well informed patients and he was about to engage with an insistent and confident patient advocate in myself. Then I handed him a copy of the newly published revised and updated treatment guidelines for CLL hot off the internet from Blood, the journal of the American Society of Hematology. (Maybe a bit over the top, but I wanted to show I knew the latest priorities for moving forward.)

After the customary long personal conversation (like, 40 minutes) to relax into our new relationship (SO DIFFERENT than the hurried 7 minute consultation in the US), and our discussing the test results from Kaiser, Dr. Roberto wrote up orders for similar tests to be done locally.

In San Francisco I had tried to get Kaiser to order two new prognostic tests not yet seen as “routine,” one testing for CD38 and the other ZAP 70. Sure enough, they refused. Dr. Roberto was just as curious as we were to see the results from these tests so he ordered them. As it turns out the insurance company here does not cover them either (too new) but the out of pocket for both molecular tests was “just” US$235.

Fast forward to our appointment yesterday. With Luiz’s test results in hand we returned to Dr. Roberto’s office. Basically, CLL is an indolent, or slow to progress, blood cancer. There were to be no surprises at this consultation. We were more or less going into set up a baseline for Dr. Roberto to begin his oversight. Luiz will likely not begin treatment for several years or longer if things go his way. While he definitely has leukemia, research indicates that there is no advantage to initiating chemotherapy at an early stage. In fact, the damage the chemo can cause may actually create more problems later on (a variation on the well known reality of chemotherapy: it might cure you, if it doesn’t kill you first.) Better to wait until symptoms pose a problem.


The relative good news is that the growing presence of lymphocytes has been slow over the past 6 months. Really slow. A doubling of the lymphocyte count over a six month period will be a tip toward initiating treatment. Other tests indicate Luiz is very much at the lead edge of this thing. All good.

The relative bad news is that since his physical exam 6 months ago in San Francisco there has been a slight enlarging of some lymph nodes, taking his Rai Stage from 0 to 1. Here we see some progression.

The contradictory news comes from the two spiffy new prognostic tests. Both tests seek to identify whether Luiz has a mutated or unmutated immunoglobulin heavy-chain variable region gene (IgVh). Mutated – good. Unmutated – not good. The CD38 test indicated mutated. The ZAP 70 unmutated. Sigh.

The test results do not offer treatment information at this point, just a better insight into disease progression. And we will see that soon enough anyway. Still, it is distressing to see any information that would suggest a more aggressive disease.

I asked Luiz if he wanted to go for the more intricate and vastly more expensive molecular IgVh test to get a better read on his prognosis. He replied flatly: "I don’t need to know that.”

So we “watch and wait” as they say. Or as I know better, we watch and worry. Our period of symptom-less quiet and contentment has been shaken. That was then. This is now.

We have another visit scheduled with repeat blood tests in August.

Please keep Luiz in your thoughts. This is scary stuff.

7 comments:

Quesada Gardens Initiative is 100% Bayview Resident-Led... said...

Luiz couldn't have a better advocate, smarter more understanding ally through this part of his journey than you, Jim. Love to you both...Jeffrey

Doug said...

My love, support, and active positive energy vibes are coursing your way via the ether.

Scary indeed. The good news is you have one another.

Hugs and love from the desert.

~doug

Jim said...

Thanks guys. Your support is truly appreciated. j

Anonymous said...

I still believe in Luiz mental power. Above & beyond I am always with you.
Um beijo grande para os dois!
Ro

Rodrigo Silva de Paula said...

Dears Jim and Luiz,

I was surfing on the internet to write a story about the differences between what we call Abolition in Brazil and why do you call Emancipation in the US, and then I got in here.

Even without knowing you we have a lot of small things in common. Niterói is a place I used to live and I love the most in Rio.

San Francisco is the city I want to raise my children one day if I have the chance.

Cocktail political talk is one of my favourite hobbies...

I have my greatest hero suffering from prostate cancer and I wish everyone who struggles on this disease is as strong as he is.

Well, sorry about invading your privacy with this, but I felt deeply good about writing this.

Although I have a blog as well - www.global-exchange.blogspot.com -, which is another coincidence if you have time to take a look, I have never left a comment on a blog from someone I didn't knew.

So, I just would like to say that I wish you guys the best.

Miss Phae said...

Jim,,You are such a strong soldier! This has been one of the defining points about you that I have such deep admiration, Your Astute advocacy is admirable as is your love for Luiz, you have set such an amazing example of the lengths we will go to and endure for the "love of our life",, I am humbled, I remember at the very start of AIDS in the early 80's and dealing with my brother and the entire circle of friends I first knew in San Francisco,, all all gone but just 2,, one you know,, Curtis,,.

My prayers and faith are winging their way to you and Luiz... Do give him a kiss for me!

You both take care and stay strong,

In Peace, Light and Love

Miss Phae

ppereira said...

Luzi, muita forca e pensamentos positivos, irma!